My wife and I will be celebrating five years in March since we opened our pharmacy’s doors. We have been an integral part of the Williamsburg community from day one; making a significant impact on those that reside here. Despite all of this, the tough position that the insurance companies and PBMs put us in makes it very difficult to serve our patients. There’s no way for us to stay in business with the unfair contracts that we are forced to sign as independent pharmacy owners; pay to play as they call it. We are in one of the only industries where we can actually lose money on a good that we sell. It’s not even like we’re asking to make hundreds of dollars on a product. In most cases we’re trying to simply break even instead of losing anywhere from $20 to $100 on a prescription. Put yourself in our shoes…whatever your respective careers are outside of being legislators…imagine being forced to pay someone for a service you’re providing….lawyers having to pay their client to keep them out of jail…surgeons having to pay their patients to perform open heart surgery…mechanics having to pay their customers to change out their transmission…this doesn’t make sense right!? This is pretty much the situation pharmacists are put in on a day to day basis and it has to END! We beg that you allow for us to simply refuse to fill prescriptions that we’re taking losses on and to take it a step further….we beg that you fix the reimbursement model completely!

Partners in Virginia Oncology Associates are in support of HB 1006 to prohibit mandatory white bagging & brown bagging requirements from payers. Cancer treatment by medical oncologists is now largely outpatient and is carefully coordinated with radiation and surgery. Many patients with Cancer are treated with concomitant radiation and chemotherapy. This requires that both occur on the day. Curative anticancer therapies for breast and colon patients must be given within a tight window after surgery in order to achieve the curative intent. Oncologists need to be able to assure that the preparation and administration are so that critical time windows can be met and the therapeutic benefit can be achieved. From a safety standpoint a majority of patients who receive chemotherapy need to receive white blood cell growth factor the day after chemotherapy. If the dose is not given in time, the patient is at significant risk of serious, potentially life threatening infection. Clinical changes may necessitate changes on the day of treatment and the physician needs to be able to accommodate the change with a change in therapy. In such situations, waste brown/white bagging would force the patient to wait for another time when the new regimen can be obtained and the originally intended drugs would be wasted. For these patient care reasons we support the prevention of white bagging and brown bagging by insurers who want to drive business to payer owned facilities. Thank you for the opportunity to address our concerns.

For years, we have been forced to accept payment for prescriptions that is below what it costs us to purchase. Some of these under-reimbursements have been hundreds of dollars below acquisition cost. While Rx plans do provide a means to appeal under-reimbursements on generics, I would say less than 1% of our appeals were granted in our favor. Brand name medications have been under-reimbursed more often and its become progressively worse. As a pharmacy, we have decided to no longer carry a very effective and popular class of weight loss drugs (GLP1s) for diabetics due to almost universal under-reimbursement. We filled approx 171 of these medications from 1/1/23-3/31/23 with many at a loss of $20 and some as high as $50. We cannot afford to stay in business if we are forced to accept losses such as those. At the very least, we ought to be able to decline to fill these rx's without facing fear of repercussions or losing contracts. We absolutely hate this situation for our patients, many who have been patrons of our pharmacy for decades. We are an integral part of our community and are willing to do whatever is necessary to take care of our patients but we have to be in business to be able to do so. I implore you to consider this bill giving pharmacists and pharmacies the ability to protect their businesses.

Thank you for your time. HB104 _ This bill allows a pharmacy to not fill a prescription if the PBM does not reimburse the pharmacy for the product. No one wants to turn away a patient, but if we are to stay open to provide service we have to be profitable. many times we pay $1000 and get reimbursed $950 the contracts we have to sign (no negotiation allowed) do not allow us to explain to the patient that can't afford to fill the Rx. If we continue patients will lose access to all medications because we will be forced to close. With rising costs and decreased reimbursements pharmacies in my area are already closing and more will come. This bill doesn't say we have to not fill a prescription it allows us to use our discretion. Odds are I will still choose to take care of these patients but won't be in jeopardy of repercussions from the PBM HB1006 Freedom of Choice. We are asking for the market to allow patients to decide where to get their prescriptions or medical devices. What could be easier to support. This would allow patients to choose with out any monetary penalty or reduction in reimbursement for choice. Patients know which providers and business have their best interest at heart at should be allowed to make that choice. Thank you for your time.

HB104 - This bill is more about ensuring access to medications by enabling pharmacies/pharmacists to make the tough decision to refuse to fill a prescription they know they will take a loss on. By pushing back against below-cost reimbursement rates from the PBMs, pharmacies will ensure their patients still have a pharmacy to visit. Too many pharmacies are closing down, creating pharmacy deserts in our state, due to 'take it or leave it' contracts from the PBMs. This will put them on notice to start playing fair or they'll need to answer to their customers.

Forcing pharmacies to bear the cost of uncovered prescriptions is unfair and a recipe for business failure. The repercussions of this (a lack of service) need to be anticipated and avoided. Please do not pass this bill.

I offer pharmacy services in 2 small towns, one in which I have the only pharmacy in the county (14 miles from the next pharmacy). If I contractually have to dispense prescriptions below my cost to purchase the drug product, sometimes more than $100.00 less, I can't continue in business. This will leave many without reasonable access to care, including Free Clinic patients, Medicaid patients and many without transportation options. Please support HB104.

We have seen issues pertaining to under-reimbursement on brand name medications for several years now as well as some generics. The volume of these under-reimbursements has significantly increased over the last year and has become an even bigger issue after Jan 1st of 2024. We're being forced to choose whether we can continue to carry certain critical brand name medications because we're no longer able to afford to dispense them. This creates access issues for our patients and reflects negatively on our pharmacy to those patients who've relied on us for years. What other business model is able to survive by paying consumers/patients to utilize their business services/products because that is essentially what is happening? That is not a sustainable model nor should it be permitted. Since PBMs are going to continue to under-reimburse pharmacies, a pharmacy should be able to decline to fill a prescription if it is going to negatively impact said pharmacy. This is very unfortunate for patient care which is ultimately the #1 priority, however, there will be no pharmacies to care for patients if pharmacies are forced to continue dispensing medications that are paid below their costs for fear of having the entire contract rescinded. We have an accredited Diabetic Self Management Education (DSME) program and a Diabetes Prevention Program (DPP) with CDC full plus recognition and we don't carry a single GLP1 medication because we cannot afford to dispense them at the losses we were experiencing. This is a very sad state of affairs for community pharmacy and its something that is in urgent need of being addressed. HB104 would be a very important step towards helping pharmacies protect themselves financially so they can keep their doors open and the lights on.

My father started an independent pharmacy in 1975, so I have grown up in the business and now have ownership in 3 independent pharmacies myself. In the last 20 years, PBMs have hijacked the industry, driving up drug prices while at the same time reducing patient care and positive outcomes. The number of prescriptions we are asked to fill that the PBM doesn't even cover the cost of the drug, much less the actual cost to dispense the drug, has grown exponentially. There is no other industry that routinely expects its providers to lose money and stay viable. The fact that the PBMs try to force us to fill at a loss, and threaten to revoke our contract if we tell a patient we can't fill the prescription because we are losing money, reeks of monopolistic and abusive business practices. Basically, the PBMs are telling us "we will pay you what we want to pay you, and you can do nothing about it". This bill will at least offer us protection and allow us to do what every other business in America is allowed to do--refuse to continually provide services at a loss.

As an independent pharmacist in Virginia for the past 17 years, I have seen the practice of below cost payment skyrocket. Every year it gets worse and worse, and the fear of losing your contract looms very large over our decisions whether or not we fill a prescription. In no other business, especially health care business, would you be expected to routinely provide something for less than what it costs. For many other health care providers they can send you a bill for the amount that your insurance company does not cover, we are not allowed to do that even if the patients would be willing to do it. We are just seeking protection from a practice that many do not even know happens. Thank you.

If pharmacies ARE forced to dispense drugs which are reimbursed at below that pharmacy’s cost there will soon be a time when no pharmacies will be in business to dispense any drug.

I encourage your support of this legislation. We are currently in an environment where we are expected to continue to take losses on prescriptions for serving patients. This cannot continue. We already are experiencing an industry shortage of staff and pharmacies are continuing to close and reduce hours. We cannot continue to try and help our patients when we are not able to even cover our costs of the medication dispensed. This will not address not being able to get an adequate dispensing fee to offset business costs. There is no other industry that is ham strung by PBM's (a contractor) of the insurance that requires you to take a loss and not be able to refuse the transaction or even explain to the patient why! We have had to stop carrying certain products and have been transferring prescriptions out that are too costly to fill. Ultimately, the patient loses because if we continue to fill these, we cannot stay open to serve our patients. There are already 5 counties in Virginia with NO community pharmacy. That number will increase if we do nothing to stop this abuse.

I have spent most of my 32 years as a pharmacist working for independent pharmacies. We know people by name, we know their families and we have relationships that create real healthcare. Unfortunately, I spend a lot of time trying to find ways to make sure we are not losing money when filling prescriptions and being heartbroken when I cannot stock something and have to send my patients elsewhere. I have been PIC at the only locally owned pharmacy in Greene County and as I have expanded the scope of practice (providing thousands of life saving vaccines during the pandemic, for instance) and increasing the amount of prescriptions we fill, I find that the revenue is not increasing and is actually decreasing. This is frustrating and scary and if we are not there to care, people will have to travel further and receive care from a revolving door of staff at the chain pharmacies. This is impacting our ability to pay our pharmacy technicians wages that they deserve and provide them with benefits such as affordable health care plans. All the while, insurance companies are dictating what we can dispense, how much we get paid, and what we can say to our patients while making record profits. Pharmacists play a vital role in triaging medical problems, being accessible, and truly caring for patients, but this is in jeopardy as profit margins are unsustainably low, and chain pharmacies try to centralize and reduce staff, reducing access to medical help. We catch drug interactions, prescription errors and build trust with our patients. This January has been especially difficult as I can see how the reimbursements are affecting the way I have to provide care. Please act quickly to stop this robbery of our locally owned pharmacies before they are all gone.

HB385: there’s an importance and safety to having two man crews.. safety for the company and the public.

Re: HB104. Through predatory pricing and criminally low reimbursement rates, large insurance providers are effectively destroying the practice of community pharmacy throughout the country, especially in rural areas. There are fewer independent rural pharmacies today than there were in 2023, and there were fewer then versus 2022. This trend will continue until insurance plans are held accountable at a bare minimum for fair reimbursement. No other industry operates in this manner, wherein a business is financially punished for working to provide lifesaving products and services for their community.

I am a pharmacist working in Amelia County. It is heartbreaking to see a claim submitted and we LOSE money. There is no other business out there that is asked to do work and lose money but pharmacies. We provide an invaluable service especially in rural communities (the Walgreens across the street is open less hours than we are and do not take certain insurance contracts that we do ex: Anthem Medicaid). If the PBMs continue to make us fill prescriptions at a loss -we won’t be here at all. In the end - everyone loses. There will be no Amelia pharmacy. Patients will be required to drive out of the county , while sometimes sick and asked to wait hours at a chain pharmacy. Most of our patients are struggling - barely able to afford things necessary for daily living - much less extra gas to travel or time to take off work. Many of them have no transportation at all. Insurance will suffer as well. ER visits and hospitalizations will rise. We all lose. We should not be forced to fill at a loss. If PBMs can’t pay us the cost to dispense, we should at least be able to tell our patients why.

Pharmacies are by contract being forced to provide medication to patients at below cost more now than any other time in my 40 years of being a pharmacist. The contracts we must sign are non-negotiable (take it or leave it). Because many of them are attached to larger PBMs, we can't refuse or "pick favorites" Many times to refuse a contract would mean the loss of 30% or more of our business. Additionally, reimbursements are so poor that we are unable to make it up on other things or prescriptions (the lost leader concept does not work here). This same reimbursement issue is behind the walk outs and poor working conditions in corporate pharmacies as well. This bill would allow us to not be forced to dispense at a loss (sometimes hundreds of dollars) and transfer that prescription to another willing provider able to serve the patient. We could then survive to service the rest of the community. This is now occurring daily and if we can't stop the financial harm, then pharmacy access is in danger!

We are losing more and more pharmacies and patient access due to the take it or leave it contracts and the PBM that insurance companies use that have no transparency on how they obtain their MAC pricing lists. I see on a daily basis prescription claims that are requiring me to fill a prescription below my actual cost. I am forced to take the loss or not stock the product and be unable to provide care to the patient.

I am a pharmacist working in Lexington, Virginia with my own business. I have many time Phil prescriptions at a loss with the inability to tell my customers that I’m being paid of course by their insurance that is not right Pharmacist should be paid at least the cost plus a dispensing fee to provide a service for the patient.

I have worked in an independent pharmacy since the age of 16 and have been a pharmacy owner since 2009. Pharmacies used to be reimbursed for the cost of medication and a fair dispensing fee, which covered the expense of labor and materials, and allowed us to provide valuable services to our communities. Over the years we have seen that plans no longer value the expertise and care that we give patients as drug costs are not being covered and in most cases, no dispensing fee is given. As business owners, we should have the freedom to let our patients know the real reason we aren't able to stock some of their medications. That the pharmacy is not being paid the cost to dispense, and in most cases, not even the cost to purchase. I would like to add that if the reimbursement issue is not addressed and fixed, there will be lots of communities without access to medication. Cumberland County, for example, has no provider and only one community pharmacy and we are hanging on by a thread.

I’ve been a pharmacist since 2003, started as a technician in an independent pharmacy, worked hospital, retail, and now back in independent pharmacy. I have witnessed firsthand the decreased reimbursements for prescriptions and our services and how this is affecting patients care and health. As independent pharmacists we provide services to our community when other healthcare is sometimes not available, if we are forced to fill prescriptions below our costs, our doors will close and so will the communities access to our services such as immunizations and diabetes care. In an environment where even retail pharmacies are decreasing hours due to inadequate staffing and their own reimbursement issues, patients are having to wait days for critical life saving medications. Patients are relying on their community pharmacies to get them their medications in a timely manner, for delivery services, immunizations, and many other services that they cannot readily receive elsewhere. If we are not even reimbursed for the cost of the product, or forced to fill prescriptions at a loss many in the community will suffer. We are having to downsize our staff, limit some of our services, and are considering shortening our own hours just to keep the doors open. I encourage you to support HB104. Without this change, the bottom line will continue to decrease, no new programs or services will be provided to patients, prescriptions won’t be able to be filled, and the doors will close. In the end, the one that suffers the most is the patient.

Hi there, I'm Natalie from Social Busy Bee, your partner in the exciting world of Instagram growth. I've discovered something phenomenal for skyrocketing your Instagram popularity and I'm thrilled to share it with you! Social Growth Engine introduces a groundbreaking service that takes your Instagram engagement to new heights. It's effortless: - Zero in on producing unforgettable content. - Extremely budget-friendly at a mere $36/month. - Completely safe (no password needed), incredibly powerful, and Instagram's best friend. I've experienced remarkable results firsthand, and I'm sure you will too! Amplify your Instagram presence right now: http://get.socialbuzzzy.com/instagram_booster Best wishes, Natalie at Social Busy Bee"

Hi I am writing to you on behalf of The Well Connection UK, a media and publishing company. We could easily get virginia.gov featured in various publications such as magazines, online blogs and news sites. This would undoubtedly help virginia.gov with publicity, reputation, domain authority and organic search engine rankings. We have a wide range of options including completely free collaborations, sponsored posts, guest posts and banner ads. If this sounds of interest, please reach out to the senior business development manager, Anita at info@thewellconnection.co.uk and whatsapp +447395206515 (GMT) Kind regards Clifton Junior Outreach Assistant

Alexandria is a vibrant city based on history, culture, a waterfront and lots of tourism. If Virginia has money and space to build an arena then you have money and space to build new schools. Our school system is deplorable. It’s overcrowded. Think of your citizens before thinking about your quick money grab that eventually leads to an inevitable loss. We don’t want or need an arena. This is pure greed.

Hi there, I'm Natalie from Social Busy Bee, your partner in the exciting world of Instagram growth. I've discovered something phenomenal for skyrocketing your Instagram popularity and I'm thrilled to share it with you! Social Growth Engine introduces a groundbreaking service that takes your Instagram engagement to new heights. It's effortless: - Zero in on producing unforgettable content. - Extremely budget-friendly at a mere $36/month. - Completely safe (no password needed), incredibly powerful, and Instagram's best friend. I've experienced remarkable results firsthand, and I'm sure you will too! Amplify your Instagram presence right now: http://get.socialbuzzzy.com/instagram_booster Best wishes, Natalie at Social Busy Bee"

Hi I am writing to you on behalf of The Well Connection UK, a media and publishing company. We could easily get virginia.gov featured in various publications such as magazines, online blogs and news sites. This would undoubtedly help virginia.gov with publicity, reputation, domain authority and organic search engine rankings. We have a wide range of options including completely free collaborations, sponsored posts, guest posts and banner ads. If this sounds of interest, please reach out to the senior business development manager, Anita at info@thewellconnection.co.uk and whatsapp +447395206515 (GMT) Kind regards Clifton Junior Outreach Assistant

Please stop trying to make criminals of law abiding citizens who just want to protect themselves. Me and my partner have recently become firearm owners because of situations that have arisen in our day to day lives, such as harassment of my wife almost to the point of altercation, sketchy characters waiting in front of our door/ducking in and out of our bushes at all times of the night, people breaking into cars in the neighborhood etc (many times the police/security were called only to arrive 45mins to an hour later). with many of these nonsensical bills you condemn us to allowing any possible violence to happen to us without a chance of defending our selves. Instead of helping fix the problem, you seek to make criminals out of any Virginian who has followed the law and legal purchased a firearm. Shame on you. I am Virginian native and since I was 18 I voted leaning blue in local and state elections you all are making me think this was a mistake. I am not proud of Virginia “progressives” who would rather strip my wife of her chance and right to defend her self rather than try to address the root of crime. Don’t make law abiding people criminals. Do some actual work and address the criminals! 2 of the proposed bills would make in illegal to bring your concealed firearm into a restaurant and another makes it a crime to have the firearm in your vehicle…. Like really? This is literally just to fill jails and strip people of their rights.

The 2nd amendment states "shall not be infringed". All of these bills are infringement and are therefore unconstitutional. Should we pass laws that people must pass a test before they can have freedom of speech? What about pass a test before you can vote? What about if someone does not have training they will be slaves again? Name one other right outlined in the constitution where a citizen has to jump through hoops before they can use that right? I oppose all of these bills as they will do more harm than good. I can understand wanting to keep people safe but gun control does the opposite. These bills will only make it harder for law abiding citizens to exercise their rights while criminals will still ignore the law. Criminals will still get illegal guns or weapons and will commit more crimes since they know the public is unable to defend themselves. Benjamin Franklin once said: "Those who would give up essential Liberty, to purchase a little temporary Safety, deserve neither Liberty nor Safety." You writing bills saying "give up your rights and guns and we will protect you". Well ask the Native Americans how that worked out for them. Ask a Jewish person who was under Nazi control how that worked out for them. Well Hitler's first step was to take away the guns from the public so they could not protect themselves and over 6 million people lost their lives. Since you do not know history you are writing bills which will doom us to repeat it. You know 75 years ago when you could just buy a gun in a catalog and it was shipped to your house we did not have this issue. In the 60s and 70s when people would have a gun in their truck at school or take one in for show and tell we did not have a gun issue. This is a mental health issue. Deal with mental health and you will fix the public safety issue. Zero of my guns have killed people because guns do not kill people. People kill people. Look at Ukraine and Israel for just one form of example why we need LESS gun control. All of these gun laws are unconstitutional and should be thrown out. Do the right thing and let us law abiding citizens have their rights as outlined in the constitution. Do not pass laws which infringe on our rights. If the 2nd amendment falls, the 1st will follow . When the 1st and 2nd fall the 13th will fall and our country will be lost and we will be back in chains.

I strongly, along with many fellow Virginians oppose any villainous disarmament bills disguised as "public safety". The second amendment clearly states "SHALL NOT BE INFRINGED" and out of touch elitist politicians who enjoy the luxury of armed security are choosing to ignore the constitution and force us to rely on sub-par police protection. The same people who want to defund the police want to disarm us. Embracing the second amendment is what is keeping our crime rates low compared to New York and California. We have seen the blatant disregard that criminals have for these so-called laws; emboldened criminals who are not afraid of the consequences and innocent law-abiding people who are forced to live in fear because a bunch of tyrants are letting power corrupt them. I do not want to live in fear and neither do the rest of us. In addition; a lot of counties and cities have declared themselves as second amendment sanctuaries to protect the rights of free individuals from the overreach of tyrannical politicians. These bills are a Trojan horse that will lead to more crime. You anti-gun politicians should be ashamed of yourselves; give up your private security and train yourselves. Then you will change your minds; because in the end, nobody is coming to save you. I would rather have a fighting chance against armed assailants than die waiting for help to arrive. These bills are pure evil

I oppose all these unconstitutional, dangerous, and pointless laws.

Alexandria is a vibrant city based on history, culture, a waterfront and lots of tourism. If Virginia has money and space to build an arena then you have money and space to build new schools. Our school system is deplorable. It’s overcrowded. Think of your citizens before thinking about your quick money grab that eventually leads to an inevitable loss. We don’t want or need an arena. This is pure greed.

I am a member of Virginia Moms for Change, a gun violence prevention group, and I support the following bills: HB1174, HB1181, HB1195, HB12, HB1424, HB1462, HB158, HB175, HB183, HB23, HB270, HB318, HB319, HB351, HB362, HB585, HB602, HB637, HB791, HB797, HB798, HB799, HB861, HB916, & HB945 I am a member of Virginia Moms for Change, a gun violence prevention group, and I oppose these bills: HB1030, HB1141, HB1198, HB1230, HB1235, HB1321, HB1325, HB1386, HB289, HB389, HB756, & HB872 Innocent children are dying on our watch. Please do something.

The end of solitary confinement must be done My son was murdered in solitary confinement at Red Onion Prison in Pound Va on 1/3/22.

Our Constitution does not provide citizens with privileges. It establishes a government with checks and balances and specifically limits the governments ability to remove the rights of its people. In regards to the matter at hand, it specifically says the the government cannot place limitations on the right of a citizen to keep and bear arms. Before I get the typical response, I know you are already aware that the phrase "well regulated" specifically refers to an being trained and ready to bear said arms. The language at the time did not use the term "regulated" as we do with modern regulations. It has been proven in the courts repeatedly that the laws you are currently considering are unconstitutional. Of this I am sure you are already aware. By spending time and tax dollars discussing laws that you know to be unconstitutional, you are in fact wasting time and tax dollars that could be spent on productive issues. I can only assume your intent is to intentionally waste time, and force members of the firearms industry to waste money on legal fees defending the constitution you have sworn to uphold. Please consider actual data and actual facts when considering gun legislation. No data supports the claim the "assault weapon" bans actually reduce gun related crime. More guns are being purchased now than ever before, yet now that the latest FBI data has been released, we can see that gun related crimes have not increased. Also, like every year that the FBI has released data, so called "assault weapons" make up a very small portion of all gun crimes. For your general knowledge the term "assault weapon" was first coined by Adolf Hitler. He renamed one of their new automatic firearms, the Sturmgewehr, because he felt that the name "assault weapon" would strike fear in allied forces. This is also the exact reason the gun control community uses this term as well. The fact is that these firearms are not fully automatic and cannot be made so without a high degree of machining skills and mechanical knowhow. Plus doing so is already illegal. The fact is the Biden's latest gun control act has not been equally enforced. It was supposed to provide additional support for school security and mental health services. It was supposed to provide stronger punishments for those cought breaking existing gun laws. It was supposed to allow FFL's to use the NICS system to check employees. It was supposed to allow FFL's to be able to instantly check inventory or potential purchase/trades by their serial number to determine if the firearm has been stolen or used in any crimes. None of these provisions have been acted upon or enforced. Please drop these latest gun control bills. They are unconstitutional and will never pass. Please do not waste your time and our tax dollars on these wasted efforts. Regards, Jonathan Goodman

I support this bill.

Our children deserve proper care

Please support healthcare coverage for PANS/PANDAS testing and treatment. The children impacted often go years without the correct diagnosis, and while there has been more education about this disease, where the child's immune system ends up failing and attacking the child's own body, resulting in brain inflammation, which needs to countless other problems, the treatments can help these children.

All three of my children were diagnosed with PANS/PANDAS in 2015. It was a scary time. After several years of treatment, they are doing much better. The medical costs to our family were very high. We were grateful to have the resources to get our children the help they needed. We know this is not the case for so many and this bill would help make essential treatments more accessible. I’m happy to answer further questions.

Honorable Committee Members, Please do everything in your power to advance HB513 to address much needed support for children and their families struggling for a correct diagnosis and treatment of PANS and PANDAS. This often missed diagnosis and lack of health care coverage when properly diagnosed places extraordinary financial and health struggles on the child and the family. Other childhood diseases and disorders are covered, PANS and PANDAS is a heartbreaking diagnosis. Please help Virginia children and their families and support HB513. Thank you.

Please support HB 513. Our child demonstrated drastic changes in eating behaviors and severe onset OCD after a flu infection in 2022. A school and a community medical professional helped us recognize the symptoms we had observed for four weeks. Even with a referral from a pediatrician it took seven more weeks to see a specialist while we provided daily behavioral support ourselves, with school support, and with a weekly counseling session. After just five days of treatment not covered by our insurance, our child began to heal. But it took four more months of medication paid for out of pocket, followed by continued support to get past the trauma of the initial 3 months of symptoms. That is half a school year disrupted for our child and our family. Families need quick recognition, support, diagnosis, and complete insurance coverage to support a PANS or PANDAS affected individual. Please help the children who are helpless with this diagnosis without medical and behavioral support and intervention. Please help the children return quickly to a normal childhood and educational experience. Thank you.

As a mother of twins who were diagnosed with PANS/PANDAS in 2020, I urge you to do all you can to ensure proper medical care is accessible for all children who are fighting the devastating mental health symptoms of this disease. Your support of this bill will mean the difference between normal lives or lives of mental anguish for children and families who are not able to pay out of pocket for the treatment their Doctors recommend, but which insurance refuses to pay for. IVIG treatment is the gold standard for these kids, and I have seen first hand how it has literally saved the life of my child. One round of treatment for a child her weight is roughly $18,000 out of pocket. Some children require 6+ more treatments. Some even require a lifetime of treatment. You can see how this is impossible for families to afford without insurance. It's heartbreaking and exhausting for the families, to know what could work but have no means to pursue it. Please help us right this wrong in Virginia - and save lives!

I urge the committee, Delegate Wilt, and the General Assembly to support this important piece of legislation. This WILL have a great impact on children and families.

I am reaching out to you today to express my strong support for HB513, which advocates for insurance coverage for PANS/PANDAS illnesses. Having personally witnessed the devastating impact of this untreated illness on my family, I believe this bill is crucial in ensuring timely access to necessary medical treatments for children and young adults. My brother, Joseph, experienced a drastic and sudden change due to PANS/PANDAS. Overnight, he went from being a typical, happy child to someone unrecognizable, plagued by debilitating symptoms such as anxiety, enuresis, rage, OCD, and tics. Despite our desperate pleas, it took nearly nine agonizing years for insurance to cover his vital IVIG treatment. During this time, Joseph was unable to attend school and has been profoundly debilitated ever since. The most heart-wrenching aspect of this ordeal is knowing that it could have been prevented with timely diagnosis and immediate access to treatment covered by insurance. No family should endure the pain of watching their loved one suffer needlessly. I fervently believe that every child deserves the chance to receive prompt medical care without unnecessary delays. I implore you to consider supporting HB513. Delayed access to treatment can result in irreversible harm and damage, as evidenced by the ongoing struggles my brother faces each day. Let us work together to ensure that no child experiences unnecessary suffering due to inadequate insurance coverage. Thank you for your attention to this critical issue. Your support could make a world of difference for countless families like mine.

Please do what is needed to ensure these families are given the insurance coverage they need to properly care for their children. In the United States of America there is no reason a child should be denied the healthcare they need because insurance has decided it should not be covered. This is inhumane and unconscionable. We can do better, and this begins with you passing this law today

Pleas.approve asap

To whom it may concern in regards to HB513, I have had PANDAS since about the fifth or sixth grade and despite its namesake as a pediatric disorder, I have continued to intermittently experienced its symptoms even now at age 21. In case you are unfamiliar, that means that post streptococcal infections, I develop OCD-like symptoms, anxiety, depression, mood swings, or some combination of the previous for months after. Needless to say this affected my ability to study, but more importantly it affected my ability to be a functioning person. It’s difficult to communicate in words, but having fear rack you till you’re afraid of going outside, becoming unable to control your emotions in front of those you love, and becoming so depressed that people begin to act differently around you, is one of the greatest sources of shame and sorrow I have ever endured in my life. I consider it all the worse that the most severe of its symptoms are in a state of flux, because the near instantaneous way in which it comes and goes serves to remind me of how easily I can be reduced to a shell. I am however, fortunate enough to have the means to receive treatment for PANDAS, but as I understand from this bill’s existence, others are not so lucky. As such, I implore you to support this bill that would help combat a disorder one would not wish upon an enemy, let alone the children that it makes its targets. Thank you for your consideration. Sincerely, Joshua Salas

Please vote YES on HB513 and request an expedited review by the HIRC. Families with children afflicted with PANS/PANDAS are suffering catastrophic emotional and financial hardship. They desperately need your help!

Please, please pass this legislation for PANS health care coverage. A friend has children with this dire affliction and seeing the unjust stress for having to fight insurers for coverage is just not right. The family has enough stress and worry fighting the disease and it's recurring nature. Please pass this bill.

Please pass HB513! The children and families affected by PANS/PANDA deserve to have Hope and to have access to treatment covered by insurance for this verified and treatable disease!! If you have read the testimonies of the families and the children, then you know the tragic toll that they have endured emotionally and financially. The lack of coverage has led to delayed diagnoses and prolonged suffering which can lead to death. These are our children, these children deserve coverage. Many members of these families have been rendered unable to contribute to society because of the unfathomable time and physical caretaking thrust upon them because of PANS/PANDA. With the passage of HB513 they will have HOPE. Please pass this bill.

Please support HB513 to help kids with PANS and PANDAS. While this condition has not directly affected my family, I have witnessed a dear friend of my go through a parent’s nightmare. I have watched her have to sit and wait while she knew her child was struggling. I have watched her cry when she no longer recognized her sweet little boy. I have watched her keep faith and hope during times most parents would crumble. These families, these parents, and most importantly these children deserve better.

Please support HB513 to help kids with PANS and PANDAS. Having worked with children/adults and their families who have been diagnosed. I have supported them while they navigate this life changing diagnosis. All while they are asimultaneously fighting with insurance and navigating medical care , that is more often then not inaccessible. It is a tragedy how difficult it has become for those affected to get comprehensive care. By supporting this bill, you are supporting so many affected by this condition.

Please fast track HB513 so that children and families can get the care they need for this devastating diagnosis. Financial ruin should not be a side effect that families have to face, period. This treatment can save lives and restore hope. Please support this bill.

A strep infection plunged my daughter into a terrifying battle with PANDAS, escalating to a severe state. Urgent treatment with IVIG was her only hope, but insurance denials sentenced her to months of suffering. The cost, staggering and potentially bankrupting, looms over families, rendering treatment inaccessible without insurance coverage. No parent should bear the dual burden of deciphering medical journals, writing appeals, and battling insurance while caring for their ailing child. Let your vote on HB513 be a voice for these young warriors, ensuring they have swift access to the treatments they need for a chance at a beautiful childhood. Thank you.

I am a Pediatric Neurologist and I practiced at St. Mary's Hospital in Richmond for 6 and 1/2 years. During that time I cared for over 200 children stricken with PANDAS/PANS. Fortunately many of my patients improved, but only if they had access to the proper treatment. In a majority of successful cases, this required monthly infusions of intravenous immune globulin, (IVIG), that is affordable only if covered by insurance. This frequently necessitated direct communication with insurance companies with mixed success. In my 48 years of practicing Pediatric Neurology, my most rewarding experience was seeing the many children whose lives were disrupted by the behaviors caused by PANDAS/PANS improve as a result of appropriate treatment. Their families were also relieved when their child's extreme intollerable and, at times, violent behaviors were reduced and, occasionally, stopped. My biggest frustration was when I had patients who would have benefit from treatment, but didn't have access to it financially. I am in awe of the parents of these children for their strength and devotion and their dedication to this cause. Helping these families will change the lives and futures of many children. I strongly support any assistence that can be enacted. Winslow Borkowski, MD

As a cancer survivor who underwent extensive treatment (chemotherapy, radiation, and surgeries) and who has a child who has PANS/PANDAS, I can tell you first hand that cancer is by far easier. A Virginian should not have to fight two battles -- one medical and one insurance. Pass HB513 expeditiously.

We have two young boys who both have PANS. We have incurred huge financial hits while desperately searching for treatment teams and plans that best serve each of our boy’s individualized needs. Please, please recognize PANS/PANDAS families as legitimately deserving of the support and assistance afforded to any other more commonly recognized and funded disorders.

With two children that have this disorder, we have sustained a lot of financial stress dealing with their care. This bill would great help us and many others who need to have this disorder recognized more broadly and covered by insurance better than it currently is.

I urge you to pass and fast track HB513. My son, and countless children in Virginia, are in desperate need of insurance coverage for the treatment of PANS/PANDAS. PANS/PANDAS is recognized throughout the medical community as a severe autoimmune disorder with devastating effects. It often goes undiagnosed, and in Virginia it goes largely untreated, for the simple reason that Virginia doesn't require insurers to treat it. This is unconscionable. Access to necessary and covered care shouldn't be determined by a line on the map, the whims of insurance companies that won't provide care unless it's mandated by the State, and the limited ability of most families to pay tens or even hundreds of thousands of dollars for care that should be covered by insurance companies. PANS/PANDAS can strike any of your children or grandchildren, and it will steal them from you. If left untreated, it can cause chronic ailments that last a lifetime. Please, do what so many states have already done - mandate that insurance companies cover the diagnosis and treatment of PANS/PANDAS.

Please support insurance coverage for these children. Our family has been severely affected by this disease and treatment is necessary in order for patients with PANS to have a normal childhood.

It is imperative that the state develop a plan for substantial medical insurance coverage for PANDAS and PANS, because children with PANS/PANDAS need access to affordable care in order for them to reach recovery so their illness doesn’t become a chronic condition. People diagnosed with Pediatric Autoimmune Neuropsychiatric Syndrome Associated with Streptococcus infections (PANDAS) that is untreated, will have their lives impacted negatively as well as create a financial burden on the state. My daughter was sixteen when she was first diagnosed with PANDAS. Based on her observed multiple physical and mental symptoms, it is evident to us her parents, as well as her doctors, that she has likely had strep, and pneumonia infections for several years. This medical condition has negatively affected her abilities to function in school and to participate in normal school activities. Whenever she has been in contact with others that carry infection, her PANDAS condition flares and the inflammation in her brain is so debilitating that she struggles with even simple interpersonal interactions and can appear to be an uncontrollable rage. I have four daughters and have years of experience paying thousands of dollars for healthcare expenses. The costs associated with diagnosing and treating PANDAS exceed that which most families with average incomes and health insurance can afford to pursue. There are several other states that have established plans for health insurance coverage that make it manageable for families and Virginia should take heed. PANDAS is not as rare a condition as it may seem. Our doctors have told us that 1 out of 200 children have PANS/PANDAS which is a considerable number. Please consider the importance of this bill and the impact it will have on so many families across the state. Our children are our future and one of the best investments that anyone can make. Pass the legislation and give families the opportunity to pursue the available health care so their children and have hope for recover and recovering their lives. Thank you for your consideration.

Please support the passing of HB513. Children are our greatest asset and can have the largest impact on our lives. By passing this bill, a massive financial burden can be lessened for families across Virginia, especially for my own. It’s a shame to know that other families have debated picking up their lives and moving to other states just to obtain coverage for PANDAS, especially as Virginia claims to put children first (even on our own license plates). Please put the children first and pass this bill.

Please pass HB513. I have a young family member whose family has been devastated by all the ramifications of PANDAS. Countless funds have been spent and continue to be spent by this family to try and “get by”. It is heartbreaking.

Please support this bill to provide insurance coverage for PANS /PANDAS which has profoundly affected a family member I love.

We are in desperate need for insurance coverage for a loved one diagnosed with PANDAS. Multiple out of pocket surgeries, doctor visits, medications, and academic support systems have been exhausted. Please pass this bill. HB513

I urge you all to thoughtfully consider this bill. In our family we thought a child needing 2 brain surgeries would be the hardest fight, but those challenges have been no match to PANS/PANDAS. Watching your loved one’s childhood slip away along with their cognitive abilities in very specific areas is hard. Experiencing constant denial by insurance companies despite the very clear research is frustrating. These children and families need your vote to help the private insurance companies find their moral compass in an industry lost to profits for a few funded by many. Restore these children’s hope and future by mandating the care and medical coverage for this debilitating condition. Thank you.

Please support HB513 and provide our children with proper medical care. It’s unbelievable that it’s not already covered.

As someone who lost their childhood to PANDAS/PANS, if I could’ve had access to a wider variety of treatments, I would have been able to continue attending school. Instead, I have spent more time in the doctors office than my classroom and know my doctors better than I know my classmates. I have already lost my own childhood. I would really like if others did not have to do the same.

As a parent of a child with PANS/PANDAS who suffered through many misdiagnoses, and whose child still suffers today due to lack of treatment and lack of insurance approval for treatments, this bill is crucial to the wellbeing of children of our future.

I have PANS. It has had a large impact on my life. When I was in high school, I experienced a large drop in cognitive processing speed. My ability to process and retain information was significantly hampered. I would spend long amounts of time reading the same sentence over and over, because whenever I finished, I would think: ‘Wait, what did that just say?’ I had a hard time reading through my textbooks, because it would generally take me a half hour, or longer, just to read a single page. Because of that drop in processing speed, so many plans I had for going forward had to be changed. The worst part was, when my PANS was diagnosed after years of trying to figure out what was wrong, my insurance company denied the treatments my doctors ordered to treat this disease. PANS/PANDAS exists, and it is a problem. It must be dealt with.

Please vote yes for HB513 to be passed! Children & their families are in desperate need of timely financial support. For years I have closely been witness to the impact of PANS/PANDAS on my 9 yr old Granddaughter. She is unable to wear clothing, unable to attend school, have friends, participate in activities. She is literally missing such a large, important part of her childhood. PANS/PANDAS affects every part of the child's and their family's daily lives tremendously. It has been heartbreaking to watch my daughter for years navigating thru every aspect of this disease and having to fight so hard to get her daughter the desperately needed IVIG treatment she needed. It shouldn't be this hard for a parent ! There's also my two grandsons, ages 5 & 6 that are having to live somewhat of an altered family life due to the PANS/PANDAS symptoms of their sister . It truly affects an entire family. Please vote in support of passing HB513 and request an expedited review by HIRC.

Please vote to pass and fast track House Bill 513. My grandson has PANS and I am very concerned about the lack of insurance coverage to treat this disease. My daughter spends hours writing appeals to her insurance company asking them to reverse their denials. My grandson continues to decline without the treatments his doctors recommend.

I am writing in full support of HB513. PANS/PANDAS affects many Virginian families. One of those Virginia families happens to be mine. My son, Gus (12), is in the fight of his young life against this devastating illness that has turned our family's life upside down. As a dad, it is so painful to watch your young child, who was once bouncing off the walls with creativity and energy, slip further and further away from you - only to be told by your health insurance that the proven and recognized treatment for this horrific disease is NOT MEDICALLY NECESSARY. As parents to a child inflicted with PANS/PANDAS, we feel duty bound to do all we can to prevent this very treatable disease from destroying young lives and families in the future which is why I am supporting this medically necessary legislation and urge this committee to act with haste to bring life-saving care to desperate families. Additionally, I urge any movement through panels or subcommittees to be done expeditiously. If it was your child, there would be no ends to what you would do to save them. A “Yes” vote is a vote to give these children and young adults a chance at living.

Please pass HB513!

Families with PANS/PANDAS in the home suffer first looking for doctors who will treat the condition and alleviate their children’s torment. The second obstacle is learning that you can’t afford treatment and must rely on insurance coverage to get your child treatment. Despite bloodwork indicating a problem and a medical doctor recommending IVIG, my son was not yet sick enough to justify insurance coverage. We had to wait over a year for the bloodwork to indicate a further decline in my son’s immune system until we qualified for insurance coverage. While waiting only my husband and I knew how vulnerable our son was to infections and other illnesses. It’s a horrible thing to wait and pray for protection until you can receive medical treatment for a child. How can we allow insurance companies to override a medical doctor’s prescribed treatment? How can we allow insurance companies to pick and choose who will get treatment? How can we continue to allow children to suffer without confronting the inequities of our insurance system? Please support this bill and support these children who need medical treatment.

Please vote to pass and fast track HB513 for Virginia children. My son has had PANS for years. My insurance company consistently denied all claims related to this disease while I watch my son continue to get worse. He has lost so much of his childhood because the symptoms of PANS have caused him significant cognitive decline, and contamination OCD. Had our insurance company covered the treatments earlier, the impacts of the disease would have been lessened and my son is now at a much higher risk of having additional autoimmune diseases.

Please pass this so everyone with PANS/PANDAS can get help that is so desperately needed!! Thank you!

I support hb513

I have two children diagnosed with PANS, Pandas. These children require specialized care to include medical care/physical and psychological care. PANS patients often take time to be diagnosed and longer time to get treatment and there is a lack of providers. Patients benefit from expensive procedures like IVIG or plasmapherisis that take much time and effort to get approved by health insurance providers, or families must pay out of pocket for these as well as many other needed services and care to include , emotional, psychological. PANS patients need regular lab work, medication, therapy, and it is a huge financial burden to many families. PANS is very prevalent in Virginia. The Commonwealth needs to show compassion, and help support PANS families. It would be appreciated if insurance coverage, respite, and medical assistance was available. These kids are battling and parents are struggling to get support and healthcare for them. When something falls into place there is always another hurdle to cross with coverage and continued care. These children deserve healing and normalcy. Please learn more about PANS. Please help us help our children.

I have a friend whose son has Pans. We need to help our children ASAP. This is an important matter!!

Please vote in favor of HB 513. It is terrifying to see your thriving happy child transform into a scared and sick shell of their former self. What’s worse is when no one knows what’s causing it because this disease is not covered by insurance, and the diagnosis is not supported in the medical community. The approval is f this bill can make all the difference.

My name is Kalee and both of my children have been diagnosed with pans/oands. We are transplants to VA and have grown to love our state and our city, however we have considered moving to places like Indiana because they cover treatment for our children and we couldn't have to fight endlessly. This already robs our children and families of so much, we are constantly fighting, for our children to be healthy, for doctors and practitioners to believe us, we should not have to fight for coverage to get our children the little help that is available to help save their lives. Please help our children, so that we may not lose them permanently.

My son developed PANS in 2015 following mold exposure and then developing Lyme Disease. I watched his life deteriorate in front of me from the impact that this disease had on his brain. He stopped being able to do daily activities. he developed tics, neurological issues, and eventually immune system issues. He’s had encephalitis more than once. This impacted his motor skills, speech, executive functioning, and much more. We tried every treatment, and he was so sick. He lost 30 pounds in a few months. The only thing that was able to stop his tremors was IV steroids and eventually IVIg. This treatment is $30,000 a month. He is almost recovered but did not reach that point until last year. He is still not completely recovered. as a single mom, It is very difficult to afford many of these treatments, especially those that are not covered by insurance. These treatments are the only thing that saved my son. I know, my son is not alone. I also work with families with children with this disease. Please help our children get the medical care they need. They deserve this they need this. Our kids can get better with the right treatment. Please support HB513 and help families like mine. my child would not have recovered without this treatment. We need medical care and coverage for our kids. Thank you.

I supports fast tracking HB513 in support of children with PANS and PANDAS! Thank you for your attention to this!

I am an adult who was diagnosed with PANDAS in elementary school and continue to have it. With PANDAS, flareups come at inopportune times and is a frequent worry. When you are in a flareup you can more easily get sick from others around you and not just from strep. Treatment helps a lot, whether it be IVIG, plasmapheresis, steriods, or long-term antibiotics or other immune therapies but not everyone can afford it or access it. Please vote for HB513 and fast track implementing getting insurance coverage for children and adults with PANDAS/PANS in Virginia so that Virginia is a better place to live for those with PANDAS and treatments can be provided to mitigate this condition. Thank you.

Please vote in favor of HB 513. This is a terrible disease that affects children and their entire family. I cannot imagine going through what my friend has been through with her darling brave little boy. If there is help any child should be able to receive it regardless of their financial ability to pay. It is the right thing.

Please support and vote to pass HB513 Medical assistance services and health insurance; state plan for payment for PANDAS and PANS, and request an expedited review by the HIRC. Children (and young adults) who are afflicted with autoimmune neuropsychiatric diseases, and their families who support them, are burdened not only by the disease symptoms, but also have the significant burden of accessing and paying for the care that they need. Individuals with PANDAS, PANS, and similar diseases often go for months to years before diagnosis due to the lack of knowledge and awareness of medical providers. Then after diagnosis, patients often repeatedly travel significant distances to be seen and treated by physicians who specialize in the care of these patients. If that is not enough, patients and their families then have to battle the health insurance companies to have the often quite expensive treatments covered and paid for. After our daughter developed autoimmune encephalitis it was 4 months until a neurologist made the correct diagnosis. Over the next few years we made repeated trips to NOVA for her treatments. We then spent countless hours battling the insurance companies for coverage of her treatment expenses, and also paid tens of thousands of dollars out of our pockets to pay for her care. Please vote for HB513 Medical assistance services and health insurance; state plan for payment for PANDAS and PANS, and request an expedited review by the HIRC. Thank you.

Please pass, help PANDAS

I am the parent of a child with Pandas. I fully support insurance coverage for, and the early diagnosis of and treatment for children with PANS/PANDAS. By all accounts my family has “good insurance”, however that did not stop our insurance company from denying my child for a procedure that would have helped him get better. This procedure was recommend by multiple physicians on his team, but that did not seem to matter to the insurance company. Instead, his doctors had to recommend other treatments that may or may not have produced as good of an outcome. Our son is still sick, and we just continue to hope and pray for better health care practices, early diagnosis, and insurance coverage for our son and all the children in the Commonwealth who suffer with this terrible illness. The children and their families in the community desperately need representation and support from lawmakers in the Commonwealth. I thank you very much for your time!

I am a Virginia resident. I support insurance coverage since health insurance companies regularly deny and this delays diagnosis and treatment of PANS and PANDAS.

Please support HB513 to help kids with PANS and PANDAS and their families have hope for a better future. The financial hardship on the families too is great, as treatment can cost tens of thousands of dollars. There also are families where more than one of their children have been diagnosed with PANS or PANDAS.

Someone I love suffers from PANDAS. It has cost tens of thousands of dollars in treatment to save their life and childhood. Please support HB513 so that every family impacted by PANDAS or PANS can have hope for a better future.

Thank you, Rep Hope. My now 21-year-old daughter was diagnosed with PANS in 2017. Before the diagnosis, it was awful. But it was almost worse after. My theoretically good BC-BS FEP insurance would not cover her care. Finally, after a year of going back and forth with them, I found one caring person in their hierarchy who took it to their medical board. They covered 30% of my $13K+ bill. She needed further care, but I am a single, retired mom of triplets, and I simply couldn’t afford it. She struggled through the rest of school. Please cover PANS/PANDAS and other neuroimmune illnesses. The patients and their caretakers need this so badly. Thank you. Melissa Pittard, Arlington, VA

My daughter suffers from PANS and it has cost us tens of thousands of dollars for treatment..so far. We had to use home equity to finance her treatment. If Virginians are to help anyone, let it be our children. Please support HB513

Pandas/Pans is a complicated diagnosis, and parents need help to pursue treatment for their children. Please help.

With was so much data collected on this disease, and all the families that have suffered as a result of it. It is time for health insurance companies to recognize this as a diagnosis. With all the money that has poured into healthcare to provide a plan for your family one should not have to pay out-of-pocket for such a proven disease that can ruin a child. Please please pass this bill so that insurance companies will have to recognize this disease as a code that is covered under the plan.

Please support HB513 to help kids with PANS and PANDAS and their families have hope for a better future

Please support HB513 !! Someone I love suffers from PANS and there is no insurance coverage for the treatments he needs! Please give Hope to thousands of hopeless parents fighting for their children against this heartbreaking, terrible disease ! Thank you!

Please vote YES on HB513 and request an expedited review by the HIRC. Families with children afflicted with PANS/PANDAS are suffering catastrophic emotional and financial hardship. They desperately need your help! My twin nieces would greatly benefit from this new legislation.

I pray that you pass HB513 as soon as possible! Every child or young adult need your help more than ever!!! The suffering for each person that gets this "HORRIFIC" disease is unbelievably unbearable!!! It is absolutely heartbreaking going through this!! It has been such a long journey!!! PLEASE, we need YOUR HELP!!!!! Thank you so very much!!!!💛

On behalf of the parents of PANS/PANDA , please support HB513

I’ve witnessed firsthand the devastating impact of PANS/PANDAS on a close friend’s child. I’ve also seen the anguish and terror of not being able to help their child, due to the inability of doctors to diagnose the condition. And when there was a diagnosis, insurance repeatedly denied coverage for essential treatment. These are very sick young people, and insurance denial needs to change urgently to avoid irreversible damage. Please vote YES on HB513 and request an expedited review by the HIRC. These children need treatment now. Two years will be too late for many. This is unacceptable and inhumane for the children that need this essential treatment to get better. It is also extremely devastating for parents who are doing everything they can to help their children and are unable to due to insurance not providing/denying the medical claims. Please help stop this and help these families seeking medical cures for their children. I am a teacher and I believe this wrongful insurance practice of denying families the essential medical care they deserve is completely unacceptable-please help change this! These families-esp the children need this to change! Please help these children!

Please pass bill HB513

Please pass HB513 Medical assistance services and health insurance; state plan for payment for PANDAS and PANS. I want families in our community who are impacted by PANS and PANDAS to have access to medical assistance services and health insurance!

I support the house bill 513 and fast tracking this bill so that parents/children can get help. Thank you for your concern.

We need to support children with PANDAS or PANS and their families.

Families are in desperate need of support.

Please help these kids and families. Thankfully, some of us have the bandwidth to speak up about this, because many moms and dads are in crisis and so underwater that they can't reach out to you. My family was one of those a year ago before my son was treated. We are lucky that we could afford a private doctor and 100% of the cost, but so many are not. My son went from 13 suspensions last year in public school to NONE this year after treatment. This is a win-win. You can help many Virginia families in crisis and give them a chance at a normal life...AND...you can save the state money. Right now my son has a one-on-one instructional aide at school. This service will be phased out now that he is doing better. That's money that Virginia will save because my child has been medically treated appropriately. The school also hires an external behavior analyst to assist with my son, which hopefully soon won't be necessary either. Virginia will pay for inaction here, as will these kids. Please do everything you can to help. Pass this bill and expedite any procedural processes, please.

Please support and fast track HB513. Children affected by this condition need immediate assistance with the cost of diagnosis and treatment. Navigating the disease is difficult enough without having to battle for recognition and support.

We have witnessed firsthand the devastating effects of PANS/PANDAS on our close friend's daughter and the gut-wrenching anguish her parents have faced trying to get a diagnosis and treatment to help her. It has taken years of countless hours of research by her parents and a dozen doctors and specialists to finally get a correct diagnosis and treatment plan for their suffering child. All the while facing insurance denial after denial for coverage for essential treatment. This has to change! These are very sick young people, and insurance denial needs to change urgently to avoid irreversible damage. Please vote YES on HB513 and request an expedited review by the HIRC. These children need treatment now. Two years will be too late for many.

In 1998, NIH established the diagnostic criteria for PANDAS. Articles about the disease have been widely published in the pediatric medical literature since 2000. Yet here we are 26 years later and families do not know that they do not have insurance coverage for this devastating illness until payment for treatment is denied. This diagnosis is all consuming for the patient, parents and siblings. It has an impact simpler to cancer except services, medication, support and payment come easily for families with childhood cancer. As a retired Pediatric Nurse Practitioner, I have seen treatment delayed for over a year while parents go through appeal after appeal to get the recommended therapy. These children are suffering. Please change this by voting yeas of HB513.

I have family and friends who are affected by PANS/PANDAS. This is a dreadful illness that interrupts the lives, education, and well-being of our children. We are counting on you to support Virginia’s children by passing this bill. Please help these children receive the health care treatments necessary to overcome PANS/PANDAS.

PANS and PANDAS are devastating for affected families – medically, emotionally and financially. Please vote to support these families as they navigate this difficult journey. Thank you.

My son suffers from Pandas and has since he was 5 years old . He still takes medication daily to keep his brain inflammation stable and he is 16 now. He suffered for years with anxiety , depression and pain. Without treatment we would Have never been able to keep him home and in therapy. We were lucky enough to have the means to help Him and Drs that would take our insurance when we needed them but we paid out of pocket for $1000+ every time. Please help these children- we know that a simple cold could send our son right back to where He was and we pray that day never happens but if it does we need to be able to get him treatment asap and that is extremely difficult when most Drs don’t take insurance or know how to work w Pans kids.

This disease is a devastating burden on children and families. PANDAS diagnosis and treatment have meant everything for my daughter, who is currently recovering and thriving in fifth grade. Without treatment she wasn't able to go to school, play sports, play piano - but I'm amazed by the recovery she's made. We were so lucky and so blessed to find treatment. Please help families like ours to access lifesaving care for their children.

I have niece who has been battling PANS/Pandas for several years. She is unable to attend school and engage in many of the normal activities a young girl normally does. She desperately needs the treatment to regain control of her life. This should be viewed no differently than any other major disease for which treatment(s) are approved under many insurance plans. Please pass this bill.

My name is Samantha, and when I was 7 years old, I used to be a normal, happy girl who went to school, played sports, and loved spending time with my friends. But years ago, everything changed. It started after I got strep throat. The infection went away with antibiotics, but then I started experiencing strange symptoms. I became anxious and obsessive, developed tics, struggled to control my emotions, and began having problems with sleep and concentration. My parents took me to doctor after doctor, trying to figure out what was wrong. For years, specialists just gave me labels like anxiety, OCD, and ADHD. However, the medications did nothing to help. I went from being a good student to barely being able to do basic schoolwork. I had to stop playing soccer because I was too tired or in pain. I lost my friends because I lashed out at them over little things I couldn't control. I spent days in bed, afraid to leave the house or even wear clothes that touched my skin. I was so miserable, and nothing was helping. We eventually found a doctor familiar with PANS/PANDAS. This doctor ran tests and confirmed that I had PANS caused by strep antibodies attacking my brain. He said I needed intravenous immunoglobulin therapy, or IVIG. This was the only treatment that could stop my immune system from damaging my brain and allow me to recover. The problem is that our insurance refuses to cover IVIG for PANS. The treatment costs thousands of dollars each month. My parents have already spent a lot of their savings on doctors and medications trying to diagnose me. Without insurance, we can't afford IVIG. Every day that I go without treatment, I get worse. I’m watching my life slip away, losing experiences I can never get back. I spend weekends alone at home while my sister and friends have sleepovers and parties. I've missed years of school, falling further behind. I can't remember what it feels like to not be afraid all the time. This suffering could end if I could just get IVIG treatment. My doctor says I could recover and have a chance at a normal life. But until Virginia passes HB513 requiring insurance coverage, treatment will remain out of reach for me and many others. That's why I'm asking you to pass HB513. Please don't let us suffer any longer.

Virginia needs this bill to pass and we need it quickly. Insurance routinely denies treatment for this devastating condition. Please take action now to change this as several other states have already done. We pay so much money for health insurance to help us during these times, not to make the situation worse. There are many children severely suffering right here in Northern Virginia. Virginia should help lead the way for our kids, please.

I have a niece that has been battling this for several years. It's an awful burden for the families financially and emotionally. Please help them find some support. Please vote YES on HB513 and request an expedited review by the HIRC. Families with children afflicted with PANS/PANDAS are suffering catastrophic emotional and financial hardship. They desperately need your help! Please sponsor health insurance coverage for PANS/PANDA patients. Thank you! Please vote yes to provide this essential and lifesaving care for those suffering from this disease and to their families who have been utterly devastated emotionally and financially from the lack of coverage and care!

Please support HB513 to mandate insurance coverage for PANS/PANDAS. The impact on families is real, traumatic, and broadly felt across all communities and your urgent support of this legislation is essential to provide relief so that families do not have to fight both the disease and their insurance companies to get their children the proper care they desperately require.

My teen was diagnosed with PANS in Nov 2021. After 18 months of treatment by a PANS specialist, she is in remission. I paid thousands of dollars out of pocket for treatment- which I was able to afford but many can’t. So this bill is important so all PANS patents are able to treat their children.

Please vote YES on HB513 and request an expedited review by the HIRC. Families with children afflicted with PANS/PANDAS are suffering catastrophic emotional and financial hardship. They desperately need your help!

HB513 is not just legislation; it's a lifeline for children like my friend's son grappling with PANS/PANDAS. This bill's compassionate provisions pave the way for a state plan, ensuring affordable medical assistance for these vulnerable young lives. My friend's family, like many others, faces extreme emotional and financial strain. I urge legislators to pass HB513, casting hope for countless families. Prompt and decisive measures will not only preserve lives but also safeguard Virginia's taxpayer dollars.

PANS/PANDAS is a debilitating disease that causes severe symptoms in children, leading to loss of normal childhood activities and experiences. Children deteriorate and become unable to attend school, participate in activities, or have a normal life. 1. Getting a proper diagnosis for PANS/PANDAS is very difficult and time consuming. Families see numerous doctors over months or years before getting the correct diagnosis, while their child continues to suffer. 2. Treatment for PANS/PANDAS is very expensive, often costing tens of thousands of dollars, and is frequently denied by insurance companies. This immense financial burden on already emotionally devastated families has forced them to sell houses, cars, empty savings, take loans, or otherwise make huge sacrifices to pay for treatment. 3. It is urgent to get insurance coverage and treatment approved for PANS/PANDAS. The longer children go without treatment, the more damage can occur and the less likely for full recovery. Passing HB513 to provide insurance coverage for PANS/PANDAS treatment in Virginia would significantly help affected children and families in the state by improving timely diagnosis, access to medically necessary care, and insurance coverage for children with PANS/PANDAS in Virginia, which HB513 aims to address. Please expedite the review process.

Immediate health coverage and assistance is urgently needed for our families. PANS/PANDAS is a devastating illness that affects the whole family. Without proper care families like mine endure a lot of stress and trauma. Receiving health coverage and proper treatment would alleviate some of the stress and hardship for the children and their families who fight daily battles in order to get help and support.

I urge you to pass HB513 . I’ve witnessed firsthand the devastating impact of PANS/PANDAS on a close friend’s child. It's a complex condition that affects every part of the child's and their family's lives. I’ve also seen the anguish and terror of not being able to help their child, due to the inability of some doctors to diagnose the condition. And when there was a diagnosis, insurance repeatedly denied coverage for essential treatment. These are very sick young people, and insurance denial of coverage needs to change urgently. Please vote YES on HB513 to bring clarification and much needed relief for insurance coverage for PANS/PANDAS, and please also request an expedited review by Virginia's Health Insurance Reform Commission (HIRC). These children need treatment now. Two years will be too late for many. Thank you for considering this request.

Please pass bill to help families struggling

Our daughter (now 15) has struggled with PANS since she was 7 years old. Although she is doing much better now, finding medical providers to help with her condition was a constant struggle, and what few providers were available did not accept insurance. PANS is a lot like long COVID and is still not well understood by the medical community, but awareness is growing. It is such a struggle for families dealing with this illness, and this bill will help Virginia families treat the condition.

Baffled why this is up for debate. No mid/person with such a chronic disease should have to worry about the ability to fund their medical care and fight for coverage with insurance. Please pass this

Our children can’t wait 2 years for treatment. Please act now.

Important bill to support- no citizen diagnosed with such a chronic disease should have to worry about the ability to fund their medical care.

Please support HB513. As a medical professional, I have witnessed the devastation that PAN/PANDAS can cause to the individual who is affected and their family that suffers along with them. It is hard enough to fight this condition. Families should not also be having to fight their insurance company for coverage for their medical needs! This bill can bring real help to so many families who are fighting everyday just to find answers and help their loved one to get better.

Strongly support. Will make a real difference in people’s lives.

As an adult PANS patient, I urge your approval of HB 513 with expedited review by the health insurance reform commission. Without prompt, adequate treatment with evidence-based immunotherapies such as steroids, IVIG, and plasmapheresis, PANS patients can be confined to a lifetime of debilitating symptoms and unsuccessful treatments. Not only does this lead to a profound loss of human potential, with at least 1 in 200 people affected, but untreated PANS causes a significant burden to taxpayers. PANS patients who aren’t treated adequately with immunotherapies may need repeated emergency room visits, inpatient psychiatric hospitalizations, and ongoing special education services. Untreated patients can become adults who are unable to work and contribute their gifts to society. Some patients who don’t receive treatment in time may lose their lives. But it doesn’t have to be that way. Prestigious institutions including Stanford, UCSF, Yale, the University of Arizona, Georgetown, and many others have published research showing the efficacy of immune-based therapies for PANS/PANDAS. Tens of thousands of patients, when able to access these treatments, have now recovered. The science is clear that PANDAS/PANS is a real and devastating neuroimmune disease. The fact that Virginia insurance companies aren't required to cover treatment for this debilitating condition is inexcusable. By expediting the review process and voting YES on HB513, you can ensure that every Virginian who gets PANS can have access to treatments that spare them a lifetime of suffering. There are countless Virginia patients suffering right now, struggling just to survive another day, because they cannot afford lifesaving treatments without insurance coverage––this is why the review process must be expedited. I’m one of the few fortunate patients who was properly diagnosed with PANS and adequately treated. Even with an expert neurologist in my corner, every medical intervention meant a huge fight with insurance to get what I needed. Fortunately, I won enough battles to receive IVIG treatments that enabled me to graduate college at the top of my class and become a successful small-business owner contributing to my chosen field. Every Virginian with PANS deserves the same opportunity to recover. Battling for care and coverage while sick like I did is something no one should have to face. Vote Yes on HB513 and expedite the review process with the health insurance reform commission.

It took 8 years and 15 doctors for my daughter to receive a proper diagnosis for PANS/PANDAS. We had to travel out-of-state to get help for this devastating disease and pay out-of-pocket to have a hope of getting our daughter back. It is a travesty that here in Virginia, with some of the greatest medical institutions in the country, people with PANS/PANDAS cannot get diagnosis and treatment and often must bankrupt themselves since insurance denies coverage over and over again. There is more evidence for PANS/PANDAS as a disease and peer-reviewed data supporting appropriate treatment than for many other conditions that are covered without question. The sad fact is that the Commonwealth pays the price when insurance won't cover treatment. We lose young people's lifetime potential as productive citizens and taxpayers. We incur costs of special education, inpatient psychiatric services,--when early intervention can absolutely restore a person to full health. It is unconscionable that insurance companies can condemn our young people to a lifetime of suffering when treatment is available. Please vote in support of this bill and rectify this terrible injustice. End the suffering of countless Virginia families. Please.

I have two kids with PANDAS. We were lucky that the symptoms were recognized early and we got in with a PANDAS specialist within 6 months. Because of early and aggressive treatment with antibiotics, steroids, and T&A surgery, we have been able to avoid the more costly treatments that are often not covered under insurance. Many others have not been so lucky. If treatment is delayed due to lack of adequate diagnosis or denial of insurance coverage, then cases will often become chronic and will require years of expensive treatments that are often not covered under insurance. Please act with haste in helping to remove these barriers to treatment. The sooner this is implemented the more families we can save from not only the high cost of treating a case which has become chronic, but also the untold costs of the loss of childhood, loss of educational and social growth, and the intense family strain of always being vigilant for unexpected and sudden emotional volatility, explosive anger, extreme impulsiveness, and the threat of it unexpectedly and rapidly becoming a safety risk.

My 3 grandchildren suffer from PANS and my daughter has spent tens of thousands of dollars for IVIG out of pocket. It is because of this life saving medicine that my grandkids have a life today. No child should have to suffer so profoundly and go into tremendous debt in order to give their kids a normal life. This has been a tragedy and Virginia families deserve better. Please support this bill.

The daughter of a friend has been stricken with PANS/Pandas. I have observed the anguish and stress she experienced, not being able to help her child. First with doctors not able to diagnose the child’s condition; and the insurance company denying coverage for the necessary treatment. Without treatment PANS/PANDAS cause IRREVERSIBLE damage. Please approve HB 513. And expediate review by the health insurance reform commission.

Comments Document

Please help!!! This crushing condition hurts children and families. It is so misunderstood and uncovered. Please help our family and others.

As I sit here thinking about what to write, I am baffled that this is even up for debate. I have witnessed a close family friend struggle to find answers. They have finally gotten answers, but now they have to fight the insurance company for coverage for a ridiculously expensive treatment. It's heartbreaking to watch a 9-year-old not be able to go to school, go to sleepovers, play sports, go outside, play, get dressed, and simply be a kid. It's heartbreaking to see the toll that this disease has taken on the whole family where they can't go out to dinner together, go on vacation together, or do any other activities that families do together. I am begging you to pass HB513 to assist all families that are struggling to not only find answers but also afford the costs of the IVIG treatment.

I am writing to beg you to pass HB513. We have witnessed the child of a close family friend suffer for the last few years, unable to do the things most parents take for granted for their children. She hasn't been able to attend school, join sports teams, have friends come over to play, go to the store, or even wear clothes because of her symptoms. It is heartbreaking to know the life she is supposed to be enjoying is being stolen from her due to this illness and the lack of adequate health insurance coverage to get her the treatment she needs. The family is faced with an incredible financial burden, as the cost of the IVIG treatments is unimaginable. How is a parent supposed to choose between getting their child the medical care they need or keeping a roof over their heads? We can do better for our children in Virginia!

Our daughter has suffered from PANS for 8 years. The disease has robbed her of her childhood and ripped our family apart. We are financially broke, exhausted and without hope. We have seen 6 different specialists, gone to countless appointments, done multiple types of treatments, supplements, antibiotics, etc-- all at our own expense. The diagnosis and treatment of this disease is not covered by insurance. I have had to quit my job to care for our daughter. She has not left the house for months, been to school in years, has crippling anxiety, OCD and fear of germs , is self harming, has had two in-patient psychiatric stays, and the list goes on. She has lost friendships and any chance at a normal life because she is never well enough to participate. We have been advised by multiple PANS specialists that our daughter needs IVIG. The cost for this treatment is $12-$15k per treatment and PANs kids usually require multiple treatments. We cannot afford the treatment. We have been denied over and over by insurance companies, submitted multiple appeals, participated in peer reviews, and continue to be denied - even though this is the standard of care for PANS. My daughter has lost her childhood. Please pass this bill so that she might have a chance at a normal life, and so that other kids/families will never have to experience this disease. The passage of this bill has the ability to end the suffering for these kids.

As a teacher I have worked with and witnessed firsthand the devastating effects of PANS/PANDAS on my student. I have watched her decline over the last three years because of this disease. She went from a happy first grader loving school and having fun with her friends to a child who is unable to attend school now. This disease has taken over her childhood experiences. She is unable to wear clothes, not able to leave the house and enjoy the things she should be able to do at 9 years old. I have worked with her as her homebound teacher for the past year in a half. I have watched this disease not only impact her but also her entire family. They have gone through moments of hope and encouragement yet be torn down again and again. Just recently she was approved for IVIG and had her first treatment. It was a long hard road for her and her family. Her mother fought hard to find help for well over 3 years. Although she has had her first treatment this is just the beginning. With the delay in her treatment she may have to endure a lifetime of treatment. No child should have to go through this. PLEASE vote to pass HB513 and I request an expedited review by HIRC. Waiting any longer could be too late for other children who are struggling with this devastating disease.

Please help pass this bill and help those suffering and their families!

Please vote YES on HB513 and request an expedited review by the HIRC. I have a very good friend whose family has endured significant emotional and financial hardship. This is an important bill that can provide some much needed help. PANS/PANDA patients deserve health care coverage and they deserve our support. Thank you!

I’ve witnessed firsthand the devastating impact of PANS/PANDAS on a close friend’s child. I’ve also seen the anguish and terror of not being able to help their child, due to the inability of doctors to diagnose the condition. And when there was a diagnosis, insurance repeatedly denied coverage for essential treatment. These are very sick young people, and insurance denial of coverage needs to change urgently. Please vote YES on HB513 and request an expedited review by the HIRC. These children need treatment now. Two years will be too late for many.

I’ve seen many families suffer from PANDAS please pass

Please pass HB513. I have watched the family of a dear friend of mine suffer greatly because of the dreadful illness. Their son has gone through so much trauma over the past few years. The treatment for PANDAS should be covered 100% just like other diseases. No one would ever want to deal with this awful illness!

Please fund HB513! I am the mother of a child with PANDAS and a licensed clinical social worker/therapist serving children and families throughout Virginia. This is a public health emergency with an estimated 1 in 200 children with this disease. This disease is bankrupting Virginia families, if we can even access the care needed in the first place. My son has been in treatment for almost two years and needs IVIG NOW, after less invasive treatments have not worked, but we are at the whim of the insurance company. No insurance company should have the final say in what the correct treatment is for my child when his doctors order specific treatments. Time is of the essence. Our kids are wasting away and the longer this disease progresses without the correct treatment the less likely our kids can function at all to attend school or work. We know the cost, because we've seen it too many times - our PANS/PANDAS kids are taking their own lives without relief from their symptoms. Since my son's diagnosis, a good friend's son came down with another abrupt onset, childhood disorder triggered by common illness - Kawasaki Disease. He received IVIG in the hospital at the time of diagnosis and hasn't had to look back, the disease did not have time to progress and he lives a normal life. Meanwhile children with PANS and PANDAS are suffering. Families often spend years getting the correct diagnosis and then years trying to access effective treatments. It shouldn't be this way. Please fund HB513 and help our Virginia kids live to their fullest potential.

Please help pass this bill and help those suffering and their families!

I am the sad grandfather of a 5 year old boy who is very sick with PANDAS. His Pediatric Neurologist has prescribed a medically necessary treatment to help his immune system fight this illness. Unfortunately United Health Care is denying coverage for this treatment. PLEASE !! support HB513 for my grandson and all children of the Commonwealth of Virginia. We are your constituents not the health insurance lobbyists. We supported you when you asked for our votes and trusted that you would always work to serve the best interests of the citizens of Virginia. Please help us in our time of need and support HB513 and ask for an emergency review.

I am the sad grandfather of a 5 year old boy who is very sick with PANDAS. His Pediatric Neurologist has prescribed a medically necessary treatment to help his immune system fight this illness. Unfortunately United Health Care is denying coverage for this treatment. PLEASE !! support HB513 for my grandson and all children of the Commonwealth of Virginia. We are your constituents not the health insurance lobbyists. We supported you when you asked for our votes and trusted that you would always work to serve the best interests of the citizens of Virginia. Please help us in our time of need and support HB513 and ask for an emergency review.

This is a very important bill that helps those with PANDAS—hope to see it passed.

Please pass this bill and request an expedited review by the HIRC. I have two dear friends and neighbors whose children have been struggling with PANS/PANDAS for years. It has been life changing for the families and for the children in the worst kinds of ways. As a parent I know how hard it is to have a sick child and then to witness these friends not receive a diagnosis for years, witness their discomfort and see these once vibrant, brilliant and athletic young people bed ridden and in pain from the illness has been devastating. It is even more devastating for these families when they did finally receive a diagnosis that insurance repeatedly denied coverage for essential treatment and these families had to pay out of pocket just to treat their child's illness and bring them some relief. These are very sick young people, and insurance denial of coverage needs to change urgently. Please vote YES on HB513 and request an expedited review by the HIRC. These children need treatment now. Two years will be too late for many.

To whom it may concern: we are a family that lives in Arlington Virginia, and have three children ages 8. 11. 13 that suffer from inflammatory brain, disease, or pediatric acute onset, neuropsychiatric syndrome, a type of auto immune encephalitis. As parents, are both licensed medical professionals and one board-certified medical practitioner. Our children were diagnosed by a world, renowned, pediatric, neurologist, located in Washington DC, who is a leader in the field. All three of our children receive necessary intravenous immunotherapy which is the standard of care for this condition. The intravenous immunotherapy consist of intravenous immunoglobulins or IVIG which is an expensive weight-based infusion medication costing several thousand dollars per treatment and usually more than $12,000 per treatment for a teenager or adult. This high dose IVIG is given on a monthly basis and most times not covered by in-network medical specialists and therefore have to be paid out-of-pocket by the patients. Chemotherapy consists of an IV medication called rituximab which cost approximately $12,000-$14,000 and necessitate IV infusions every three months in addition to the monthly IIG treatment. Once again, this chemotherapy, Rituximab is usually not covered by medical insurance. The fact this necessary treatment is not covered by medical insurance place an immense burden on the families who suffer from this horrible brain condition.. More specifically, the families have to submit all medical reimbursement claims to insurance companies for these out of network treatments, and fight for only a small fraction of reimbursement through numerous appeals. in addition to suffering from this horrible disease, the families suffer further from this administrative and massive financial burden. In the past three years, our family has spent more than $350,000 .00 cash upfront out of pocket for all treatment for our children (thus far) despite having the best medical insurance, this country can offer. This disease tears apart families and destroys them financially and emotionally. It is prudent that legislation follows in the footsteps of other states, such as Massachusetts, and passes legislation which mandate insurance companies to help these suffering families. Finally, we have witnessed this necessary intravenous, immunotherapy and chemotherapy help our children medically improve where they can now attend school and conduct daily activities which are normal for functioning children their age. Thank you for your time.

Please vote yes to provide this essential and lifesaving care forthose suffering from this disease and to their families who have been utterly devastated emotionally and financially front this lack of coverage and care!

Please support HB513 and please ask for an emergency review. I am the father to a 6-year-old son with PANDAS. We are currently fighting our health insurance to cover medically necessary treatment for him. This cannot wait. He cannot wait. So many others cannot wait. Their health depends on this.

Please help these families that are dealing with Panda. A terrible disease. Please sponsor a bill to help provide insurance for these families that are suffering. Thank you!

As a Grandfather, I am watching my 9 year old Grand Daughter go thru this horrible disease. Her mother and family are going thru a total disaster with the insurance company. No one understands this disease unless they have a family member going thru this and them their selves are doing every bit of research and fighting the bureaucratic non-educated system of today. My precious Grand Daughter hasn't been able to wear clothes for 6 months, she wants to go to school, participate in sports, have friends and non of this is possible without the insurance companies approving the IVIG's that these children need. It's absolutely insane that there are Bill's on the floor to regulate Gas Blower power or allowing carryout alcohol when these families lives are being destroyed due to this horrible disease. The cost for these treatments is absolutely off the charts and with out the support of our Delegates, The Senate and our Governor these families will quickly reach bankruptcy. I plead with you to please support this Bill and allow our little children to have a life of normality much like other children. Thank you so much for each and everyone in our General Assemblies consideration, Granville Wyatt

My name is Megan Longo. I am a registered nurse, wife and most importantly a mother to 2 children. My 6-year-old son has PANDAS. His life and our family life has been turned upside down by this disorder. I am asking you to support HB513 and I am asking for an emergency review. My son has been prescribed medically necessary treatment by his local VCU Health pediatric neurologist. United Healthcare will not cover this treatment. We have paid ourselves for his first treatment and our son is responding positively. We are in the process of appealing insurance so that our son can continue to receive this treatment. This is an urgent matter that cannot wait. My son and all of the children and young adults afflicted by this disorder deserve to live a full and happy life. They deserve to have medically necessary treatment covered by health insurance. Please support HB513 and please ask for an emergency review.

Please act to send this bill to the HIRC so that we can begin the process of showing how important coverage for the diagnosis and prompt treatment of PANDAS/PANS is to families and the child with the diagnosis.

No parent will ever be able to adequately describe the pure terror of what it is like to have a child with PANS/PANDAS. Two weeks after a treated strep throat infection, my sweet eight year old woke up a different child. Terror-stricken, screaming, and speaking incoherently, I knew we needed immediate help. Our very caring pediatrician suspected PANDAS but despite my quick action, my son continued to react to every illness that came into our house. It took three years of struggle to find the expert care he needed and another year to get insurance to cover the lifesaving treatment he required. Imagine if he had access to specialized care and treatment four years ago? Maybe he would not have missed celebrating Christmas with family, trick or treating with friends, or attending summer camp? Maybe he would not have lost his best friend or missed so many days of school? Maybe we would not have had to spend over $80,000 for the treatments, maxing out our credit cards? Maybe I would not have had to find a new job that allowed for flexible work hours or had to spend hundreds of hours arguing with insurance companies? Maybe my younger son would have known what it is like to have a healthy older brother? And maybe my child would never have had to tell his mom that because of PANS/PANDAS, life feels too hard to keep on going. Each day that goes by without access to covered medical care is another day of lost childhood. By supporting HB513, you have the power to save the lives of Virginia children who are currently struggling and prevent this kind of trauma for future Virginia families who face a PANDAS/PANS diagnosis.

Please pass this bill to help all the families I know struggling with this illness. Thank you!!

Please sponsor health insurance coverage for PANS/PANDA patients. Thank you!

My nephew has sustained permanent brain damage due to untreated PANDAS. He has suffered debilitating seizures, and he has not been able to attend school in-person due to his illness. No family should have to suffer this terrible medical outcome, due to insurance companies who refuse to acknowledge this autoimmune disease.

How can a mother of 4 children with PANS/PANDAS possibly share the utter importance of HB513 with a single comment that wraps up the 8 years we have experienced. I could write for hours and not even begin to scratch the surface of what my children have had to endure with not only this disease, but what they have endure in terms of treatments that are the standard of care but were completely out of reach because of insurance denials, while they continued to progressively suffer. I will not go into details about the symptoms, because you can read the symptoms for those affected but here are some things not listed that many/most families have had to endure aside from the devastation of the disease itself. We saw 16 medical professionals who all believed it was PANS/PANDAS but with no education or knowledge of how to treat were not able to help my children or refer to anyone as it seemed that no one in Virginia was treating from their knowledge. 1,185 days from onset to receive an official diagnosis and start treatment options for PANS/PANDAS. From the time IVIg was first prescribed and denied for my youngest son until he got IVIg for PANS/PANDAS was 1,460 days ....4 years... On top of the 3+ years prior to having a diagnosis when onset began ... 2,645 days of waiting... But not simply waiting because the disease state progresses in the waiting, it needs medical attention and treatment to get better... 2,645 days of waiting while his brain was attacked without relief. 2,785 days before my oldest daughter would get IVIg for PANS/PANDAS ... 2,785 days of waiting, waiting with disease progression. My youngest daughter went 485 days before receiving life saving IVIg from the time it was prescribed by her treating neurologist. During that time she begged to get better, every treatment tried for 3 years failed... 1,095 days of failed treatments ... a child in crisis without access to the treatment prescribed by her treating doctor, when all other options were tried and failed and no options were left. My oldest child took the longest to diagnosis even with a treating doctor who was treating my other children. We can see scarring on his brain from his MRI now. Some symptoms will most likely be permanent from the scarring we can see in more then one of our children. Lives forever changed by delayed treatment from doctors who weren't knowledgeable. Lives forever changed due to insurance denials for prescribed treatments that should have been received at the time it was prescribed. Please fast track HB513 in HIRC because children are already waiting in crisis and need the care prescribed by their doctors. Please don't add 730 days to children, young adults and families who have already been waiting for life saving treatment. We have been delayed long enough.

: I’ve witnessed firsthand the devastating impact of PANS/PANDAS on a close friend’s child. I’ve also seen the anguish and terror of not being able to help their child, due to the inability of doctors to diagnose the condition. And when there was a diagnosis, insurance repeatedly denied coverage for essential treatment. These are very sick young people, and insurance denial of coverage needs to change urgently. Please vote YES on HB513 and request an expedited review by the HIRC. These children need treatment now. Two years will be too late for many. Please help now.

Please vote YES on HB513 and request an expedited review by the HIRC. Families with children afflicted with PANS/PANDAS are suffering catastrophic emotional and financial hardship. They desperately need your help!

Please support this bill. My daughter survived PANDAS because our family could afford the astronomical cost of treatment. Please make it available and not a financial hardship for Virginia families like it was for us. These children deserve the opportunity to heal.

Insurance just approved us for IVIG and my daughter just had her first treatment in January. This was NO easy road and took 5 YEARS for us to get to this point! It should NOT be this hard for Virginia families! Similar to most families in this predicament it was (and still is) an excruciating long road to find doctors, waiting for the appointments, get diagnosed (usually incorrectly), pay for the expensive lab work (that insurance NEVER covers) and then get told IVIG is the only treatment that will be lifesaving for your child. BUT the diagnosis that was given isn’t covered by insurance to get approved for IVIG. So now it is back to the drawing board. The physician will not do peer to peer reviews so it is up to the family to continue to appeal and get crushed each and every denial while having the gut wrenching conversations about moving to a state where it is covered (away from all family support), can we get a loan, how many treatments will that get us…. Is that enough to make a difference? So I followed my gut and a recommendation (from a PANDAS mom) and we headed to MISSOURI to a specialist where we received the CORRECT diagnosis (multiple at this point), medical testing (MRI and EEG). I was given hope! With an amazing physician and pure determination (and luck) on everyone's part we reached a start line! Read that again…… A START LINE ….. After 5 long YEARS we are able to finally START TREATMENT. Virginia children and families should not have to go through this! Please vote to pass HB513 and if you refer to the HIRC, please expedite the study process. My daughter may have to endure a lifetime of IVIG treatments and management of medical conditions that occurred due to delay in treatment. Virginia Children deserve this life saving treatment.

Please support HB513, supporting insurance coverage for those with PANS. Thank you in advance.

As a school counselor I have witnessed firsthand the devastating effects of PANDA/PANS. My student struggled and could not attend school. I have also seen the anguish of his family and the fear that they could not help their child. This diagnosis was well researched and peer reviewed by the National Institutes of Mental Health. While rare this diagnosis is research based and reviewed by some of the top researchers in the country. Children have died as a result of this diagnosis. Parents are living in fear for their child. Parents do not have the resources to have to fight insurance companies. They need timely medical coverage now..please vote yes on HB 513 and request expedited review by HIRC. Two years from now, even a month from now, could be too late. Thank you. Dr Judith O’Rorke-Trigiani PhD 3013328813

I am a physical therapist working in Arlington Virginia who works at an independent clinic that specializes in chronic illness and autonomic disorders. I am writing in support of the newly introduced bills, HB513 and HB514 which address the needs of those individuals with Post-infectious Neuroimmune Disorder/Immune Mediated Neuropsychiatric Disorders ( also known as PANS and PANDAS). These bills call for private insurance and Medicaid coverage for the diagnosis and treatment of PANS and PANDAS as well as the reintroduction of the Governors PANDAS/PANS Advisory Council to continue its work of advancing awareness, education, and research on these diseases. PANS and PANDAS are immune-mediated disorders affecting young people. The immune system attacks healthy brain tissue, resulting in life altering brain inflammation and disabling physical and mental ailments. The illness is triggered by common infections such as strep throat and the flu. Left untreated, PANS/PANDAS can result in lifelong disability and even loss of life. Patients can return to baseline with early diagnosis and treatment. As a physical therapist working with these young people, I have seen first hand the devastating affect PANS and PANDAS can have on individuals who have this illness and their families. I have seen the benefits of knowledgeable physicians prescribing antibiotics and anti-inflammatories and immunotherapy, which is extremely costly. According to a study done at Stanford University, the Caregiver Burden Index for PANS/PANDAS exceeds that of Alzheimer’s Disease. With insurance denial, parents are forced to take off work, and often sell or refinance their home in order to pay for treatment out of pocket. I urgently request the immediate approval and/or an expedited review of these bills, HB513 and HB514, by the Health Insurance Reform Commission. Proper medical care rendered in a timely fashion can prevent a lifetime of disability, pain, and most likely dependence on our social resources.

Thank you in advance for considering my testimony. I am the parent of 2 children diagnosed with PANS. The diagnosis was a godsend, because before that we didn’t know what was wrong and I feared my kids weren’t going to live. The devastating impact of PANS/PANDAS on is real and hits so close to home. My children have the same disease but very different symptoms and related diagnoses. One has POTS and chronic fatigue. The other has depression , severe anxiety, and autism. There have been multiple hospitalizations and many medicines. insurance repeatedly denied coverage for essential treatment. My children missed school and are falling behind. These are very sick young people, and insurance denial of coverage needs to change urgently. Please vote YES on HB513 and request an expedited review by the HIRC. These children need treatment now. In two years , I hate to think about how many kids we’ll have lost to self harm, or with long term brain disorders. Please help now! Thank you! Graciously, Renee Gutshall Arlington resident

I wholeheartedly support this bill. I have watched the effects PANS/PANDAS has had on my friends Jonathan and Erin Reid’s son, Gus l, and their entire family. Because of the effect Gus’s condition had on the Reid family, their other son, Draper, had to live outside the home with other family memeber’s. The toll this took on him during his own developmental years was overwhelming. Thankfully the Reid’s were able to live on Jonathan’s income and Erin was able to be home with Gus. Not every family is as fortunate. Please vote yes on HB513 and help these families get the vital treatment they so desperately need. Thank you

I am providing comment on HB 513. Our daughter was diagnosed with PANDAS at the end of 2020. Caring for her and trying to get adequate/successful treatment has been a full-time endeavor. We found that getting insurance to cover any of her healthcare costs was not an option for PANDAS and her co-infections. We’ve emptied our savings. I quit my job for a year to care for her because she needed so much extra hands-on care. That further put a dent into our financial resources and we went into debt to make sure our daughter had the care, tests, and treatment she needed. Although I’m now working again, we’re now in the process of trying to dig ourselves out of our financial hole. We are exhausted. We have spent untold amounts of money on medical care, travel, and time off work to research doctors and treatments. More importantly, our daughter is so tired of not being herself. We're in for a long, slow road to recovery. She has slowly made some progress over these past few years, but through the ups and down she's nowhere near 100% yet. We’ve put off even exploring a potential treatment (IVIG) that might have helped her to to baseline more quickly because it is prohibitively costly to pay out of pocket (think tens of thousands of dollars per treatment). And, unfortunately, we don’t have the time to try to fight for the small possibility of insurance approval because managing our daughter’s illness and our full-time jobs just absolutely takes all of our time. The passage of HB513 would be life-changing for us as a family and for our daughter in particular. She is such an incredible kid - full of joy, kindness, intelligence, and curiosity. She has so much to give, but she’s hampered by her illness. We’d love for her to be able to be fully in remission, to be able to go to school full-time, and to only have the cares of an ordinary 11-year-old. By having medical assistance available to us, we may be able to afford treatment that would truly turn her life around. Please consider voting “yes” on HB513. Thank you!

I support this bill! Parents need help across the Commonwealth to pay for the variety of treatments required when a child has PANS/PANDAS. My daughter was a healthy 7 year old until she was sick on spring and turned into a child riddled with OCD and anxiety that could not be relieved. Thankfully we were fortunate and found care immediately (most families are not that fortunate). But it has not been an easy road maintaining her health and well-being. Insurance coverage for treatments like IVIG and plasmapherisis should be covered by insurance so that more families have access to this potentially life-saving treatment. Pass this bill and help out many Virginias suffering from PANS/PANDAS and lighten the burden their families are already feeling.

Please support HB513 for the coverage of vital treatment for children with PANS/PANDAS and their families. As a mother and mental health professional, I have seen the debilitating affects on my son and our whole family. The financial piece is a big struggle as I have delayed appointments and treatments knowing it would come all out of our pocket. This population of children need multiple doctors, treatments, and medications to help stabilize and try to heal. Insurance coverage of this diagnosis has been needed for years!!! Thank you for passing this!

I’ve witnessed firsthand the devastating impact of PANS/PANDAS on a close friend’s child. I’ve also seen the anguish and terror of not being able to help their child, due to the inability of many doctors to diagnose the condition. And when there was a diagnosis, insurance repeatedly denied coverage for essential treatment. These are very sick young people, and insurance denial needs to change urgently to avoid irreversible damage. Please vote YES on HB513 and request an expedited review by the HIRC. These children need treatment now, not in two years.

I have personally witnessed the rapid and severe impact of PANS/PANDAS on a child. Transforming a child who was smart and full of life into deeply afflicted individuals almost instantly. The sheer helplessness felt by parents, when medical professionals fail to recognize and diagnose this condition, is devastating. And even with a diagnosis, essential treatments are inaccessible due to insurance refusal. Immediate action is imperative to prevent lasting harm. Please vote YES on HB513 and request an expedited review by the HIRC.

Please pass this bill! PANDA/PANS should be recognized and covered by insurance com-Angie’s. Families should not be left to fight for financial help while also fighting to save their children.

My son was a thriving 8-yr-old playing baseball, involved in Boys Scouts, swim-team, and winning math awards. Overnight, he regressed to listening to baby music, not being able to write legibly, couldn't do basic addition or subtraction, having fits of rage, and expressing suicidal ideation --at 8 years old. Over the next 5 yrs, we saw numerous doctors, in numerous specialties, had to remove him from one elementary school that wouldn't provide special education services, had to go through the process of getting an Individual Education Plan (IEP) in his new school, and then moving to yet a third elementary school due to overcrowding. My son was diagnosed with PANS due to mycoplasma pneumonia and toxic mold exposure (found in the first elementary school.) For 2 years (non-stop) my son took antibiotics to reduce the inflammation in his brain; and it mostly kept him stable. If he missed a dose or got another illness (he had the Flu twice) he would have a "break-through" flare and would go into fits of rage, and attempted suicide at least 3 times that we are aware of. In August 2022 my son started IVIG treatments. We were among the lucky few that had found a doctor, who took insurance and had insurance that would cover the treatments. After 4 months of IVIG treatments, he went from taking 14 medications daily for ADHD, anxiety, sleep disturbances, autoimmune hypothyroid, and other symptoms, to taking 3 for sleep, anxiety, and thyroid. He continued for a total of 9 months of IVIG treatments when his neurologist retired. 5 months after his last treatment he relapsed, and we still haven't found a new dr. and have had to put him back on antibiotics (indefinitely) until we can find a new doctor and get IVIG treatments again. We are going on 6 years, of so many doctors, so many medications, and so much pain and heartache that most people just can't even imagine. We have had to add another child to already overburdened Special Education programs in our county schools. It costs FAR more in the long run to just treat the many symptoms and not cure the underlying cause. If my son had had a proper diagnosis (instead of doctors claiming they don't believe in PANS, because the insurance companies didn't cover it); he could have been cured within a year. Instead we are approaching 6 years, and still fighting. It should not be this difficult to get effective treatments and save these children, families, AND COMMUNITIES, from the years of struggle and heartbreak that we are enduring.

To know a family personally affected by PANDAS has been difficult to imagine, without knowing the financial pressure added to the mix. The stress of daily life and planning the next hopeful medical procedure affects the immediate family and ultimately their jobs, circles of support and extended families. If you aren’t acquainted with the devastating roller coaster of behaviors , please be informed then vote for this bill.

Thank you for taking time to review and PASS this important legislation for our children’s future! I’m an Home Infusion RN (25+yrs) visiting these young patients to give them the required infusion monthly to help repair the brain inflammation that does occur in the PAND/PANDAS diagnosis! Several patients that have missed or omitted monthly’ infusions due to “ Lack of Funding” have seen the decline in patients ability to be apart of family/school and friendship community with the debilitating diagnosis. Continued treatment is vital for their recovery and overall wellbeing ! The patients all want to grow up to adults and not rely on parental support forever! Thank you

Please pass this bill as it has affected so many children's lives and this could help so many in need!

Insurance needs to fully assist families dealing with PANS/PANDAS. These diseases drain families emotionally, financially and in many other ways. Please help these children and their families!

As a holistic wellness consultant, I’ve worked with a number of young individuals suffering with pandas. This disease is to a certain degree invisible and hard to diagnose until it presents itself in the most extreme life threatening ways. It is very difficult to treat because of the multifaceted elements of symptoms that are presented and sometimes disguised and often takes the most skilled neurologists and surgeons to provide care. I have most recently worked with a family, who has suffered incredibly, not only the child who is inflicted with pandas, but the entire family, who are trying to navigate their way through the day today affects of this debilitating disease. It is incredulous to think that on top of the massive, emotional and physical drain of families suffering with a child that is inflicted with pandas, they then have to go and fight to get financial support, often putting themselves into incredible debt just to help the child survive. It is essential that this disease is recognized and all necessary. treatment is covered by health insurance, and if you were to personally experience firsthand what this disease does to a child and its family you wouldn’t hesitate to vote YES to this bill .

To whom it may concern: for more than two years, I have watched from close range the devastating impact of PANS/PANDAS on a close friend’s child. I have seen the constant fear and frustration as they have struggled to properly diagnose the condition. Can you imagine the anguish and terror of not being able to help your child due to the inability of many doctors to identify this illness? And when there finally was a diagnosis, can you imagine the gut-punch this family received when insurance repeatedly denied coverage for essential treatment? It is heartbreaking to watch. Our friends' child is an amazing young woman. She is gifted academically, is a fantastic athlete, and a kind and thoughtful soul. Her life, including college, has been placed on hold as she struggles with this disease. Please pass HB513. For my friend's child and for all others with PANS/PANDAS. These are very sick young people, and insurance denial needs to change urgently to avoid irreversible damage. Please vote YES on HB513 and expedite review by the HIRC. These children can't wait. Thank you for your consideration.

Hi Andrea, how’s it going? If you have a few minutes free today, can I ask for another favor? This should be pretty quick! I’m testifying in Richmond on Tuesday on the bill that calls for insurance coverage to treat Ella’s condition. The committee where we’re testifying  will decide on whether to approve the bill or send it to the health insurance reform commission to review and make a recommendation on what to do. Unfortunately, that commission has up to two years to do so. PANS/PANDAS cause irreversible damage when left untreated. We’re asking for approval of HB 513 and expedited review by the health insurance reform commission. I’ve witnessed firsthand the devastating impact of PANS/PANDAS on a close friend’s child. I’ve also seen the anguish and terror of not being able to help their child, due to the inability of many doctors to diagnose the condition. And when there was a diagnosis, insurance repeatedly denied coverage for essential treatment. These are very sick young people, and insurance denial needs to change urgently to avoid irreversible damage. Please vote YES on HB513 and request an expedited review by the HIRC. These children need treatment now. Two years will be too late for many. Andrea Perlman FNP Inova Gohealth

My wife has given testimony and here is my perspective as a father, husband, and Virginia tax payer. PANS is a multifaceted disease that doctors have difficulty diagnosing, treating, and understanding. Some of the difficulty starts with the complex blood tests panels and other expensive diagnostic testing that are required for PANS to be identified. Furthermore, expensive treatments like IVIG infusions can cost more than $10,000 for each treatment and are not feasible for most families. In my family’s experience doctors would often not attempt tests or treatments because of the difficulty it takes to get insurance to cover the costs. We ran into numerous roadblocks with doctors just treating individual symptoms instead of administering the necessary tests and treatments that our daughter desperately needed. PANS can no longer be ignored in Virginia. Unfortunately, this is a political issue that affects so many Virginia families. My family was devastated financially and emotionally because of doctors not collaborating at a local hospital. Patients need the Virginia government to help them advocate for the best PANS care possible. Many states have already passed PANS legislation to address the complex insurance and financial issues. Please do what is right for Virginia families who are fighting for their kids.

We need the insurance companies to cover basic treatment for this disease and all the kids it affects.

PANS/PANDAS has had a devastating impact on my close friend’s child. The family has spent years dedicated to providing the care she needs, and trying everything imaginable to improve her symptoms. It pains me to know the anguish they feel not being able to help their child, due to the inability of doctors to diagnose the condition. And when there was a diagnosis, insurance repeatedly denied coverage for essential treatment. I’ve also read numerous news stories about many other very sick young people who are also suffering from Pans/Pandas. Insurance denial needs to change urgently to avoid irreversible damage. Please vote YES on HB513 and request an expedited review by the HIRC. These children need treatment now. Two years will be too late for many.

Families dealing with PANDAS are incurring an incredible amount of financial debt. Please vote yes for this bill and give these families hope while navigating these difficult seas!

As an educator for over 30 years, last year I had the opportunity to work with a student diagnosed with PANS and witnessed firsthand the devastation on the child, his access to education and the impact on his family. While there were days of success in terms of teaching, there were many other days where I experienced the anguish of not being able to help the child due to the inability of doctors accurately diagnosing the condition. When there was a diagnosis, insurance repeatedly denied coverage for the essential treatment required. This was catastrophic for both the child and his family. Children with PANS/PANDAS are very ill and insurance denial of coverage needs to change immediately. Please vote YES on HB513 and request an expedited review by the HIRC. These children need treatment now. Two years will be too late for many. Thank you.

As a parent and educator, I urge you to support HB513. I have encountered 3 families in my teaching career whose lives have been absolutely turned upside down by a PANDAS diagnosis. These children and their families deserve the legislative, financial and emotional support that could make a critical difference in their lives. No mother wants to have to fight to get her child's needs met; yet the moms I have encountered are the fiercest advocates for their children and they know what they need. Please honor them by acknowledging their advocacy and supporting their requests. These children do not have time to wait.

I support this bill to provide the best possible insurance coverage for all who suffer from the debilitating PANDAS. I have seen first hand the crippling effect of this disease on families and children. Please help them!

I may not know much about PANDAS but I have seen its horrific effects on the patient and patient’s family. The physical and emotional turmoil a family feels is devastating and renders one to feel hopeless. In being around this family in particular, the scariest part was that no one had answers. No one originally could make a diagnosis. There was only one doctor in Richmond that was even qualified to deal with PANDAS and it was nearly impossible to see him. After months and months of unrelenting fight from the family to see the doctor, a new fight began with insurance. Nothing is covered!!!!! This process has taken away four years from this little boy and his family because of insurance bureaucracy and the lack of medical availability. Something desperately needs to be done!!! Please vote for this bill! Thank you.

Urgent need to expedite the HIRC review period of PANS/PANDAS per referral of Bill HB513 from the Commerce and Labor Committee (HB 513 Medical assistance services and health insurance; state plan for payment for PANDAS and PANS) I am a Virginia-licensed Clinical Psychologist, a resident of this great commonwealth, a mother of three, and a parent of a child diagnosed with Autoimmune Encephalitis (PANS/PANDAS). I am asking for you to request an expedited review by the HIRC of PANS/PANDAS and matters associated with bill HB513. PANS/PANDAS are infection-triggered immune-mediated neuropsychiatric disorders. Prompt and adequate treatment can return the child or young adult to their pre-illness baseline. Delayed and inadequate treatment can result in progressive disability and even death. The Georgetown University Medical Center PANS PANDAS and Other Neuroimmune Disorder Brain Bank, is a reminder of this tragic reality for our families. PANS/PANDAS illnesses are relentless. The treatment our son currently receives is life-saving and, as such, can only be described as medically necessary. Legislation has a different schedule than the schedule of illness progression. A two-year review period in the Health Insurance Reform Commission for bill HB513 would represent serious brain involvement for children and a young-adults who are currently suffering from PANS/PANDAS. Delays in the deployment of the HB513 bill can represent, at best, a whole generation of kids, who are currently sick, destined to a life of disability due to lack of adequate and prompt diagnosis and treatment, or due to the inability to finance the cost of their care due to insurance denial of treatment. At worst, many more brains of our youth will be added to the POND brain bank. Please request the HIRC to accelerate the review process of PANS/PANDAS, so a bill can be passed for insurance coverage of the diagnosis and treatment of PANS/PANDAS. Six months is all it took, for my child’s life to go from a promising future to a life of serious and pervasive impairment. Your support is truly lifesaving. This issue cannot be delayed. DSS McLean, VA Parent to a child with PANS

Please support this important bill. Medical insurance needs to cover a serious condition like this. No parent should have to choose between bankruptcy and being sure that their child receives life changing and life saving medical care, and insurance companies should have to cover this.

I am the father of children with PANDAS/PANS. I am writing in support of HB513 which will provide insurance coverage for people diagnosed with this debilitating illness. This is an urgent matter, and we need treatment now. Virginia young people diagnosed with this disease cannot wait any longer for coverage. Lives could be saved by expediting this bill.

Please pass this very important bill that will help ease the suffering of so many families dealing with PANS/PANDAS. When effective treatment is available, it is inhumane for insurance carriers to deny coverage for proven and effective treatments. Please consider the families whose lives have been broken by this disease and pass this bill.

I am a parent & an educator. I have good friends & students whose children have been significantly impacted by PANDAS. HB513 is so important to ensure treatment that is available, appropriate, and covered by insurance.

It is almost impossible to receive proper care in VA for a child with PANS. Mine was misdiagnosed in 2018 through various doctors before the ER sent her directly to psych with no medical work up, where she was locked up for two months with no crossover between other hospital departments and thereby, no other medical treatment than psych drugs which only made her symptoms worse. We sought out a specialist in another state who would see her. It is six years later, and it is just as hard to get proper care in VA. The specialists who treat PANS have either retired or aren’t accepting patients and our hospitals are not dedicating anywhere close to the resources needed to treat our Virginian children with PANS. Our kids’ disease is complicated, lending to a prominent attitude that our children are simply complicated and it’s easier to just ignore. Not acceptable. We need an infrastructure of health care that will support these children and families so that they can be properly diagnosed and treated, avoiding additional suffering, concurrent illnesses which progress into lifelong disabilities. Right now, our children are dying. We have lost trust in the very people who have sworn to heal, putting obstacles in our way through uneducated misdiagnoses, failing to treat because of lack of insurance coverage, or having the audacity to say they don’t even believe in PANS when Stanford and NIH have researched for decades and produced protocols. Many states are passing insurance coverage for PANS. It is the beginning of building an effective healthcare system for these kids by providing acknowledgment of their disease and the admittance that they deserve proper care. The financial costs of a misdiagnosis and lingering effects are staggering, but the life cost is just as traumatic. My child lost over a school year being homebound. She lost friends, her spot in Maggie L. Walker Governor's School, her ambition to be a neurosurgeon, high school dances, sleepovers, birthdays - she lost a normal childhood and her brothers did, too, watching her suffer and their mother absorbed in trying to keep their sister alive. The battle with doctors to correctly diagnose caused such stress that my cancer had grown large and in lymph nodes even though I’d had a clean mammogram 10 months prior. It is now stage four and terminal. My child is now a young adult in college, but she has since received additional diagnoses of Hashimoto Thyroiditis, epilepsy, depression, and ADD, all of which occurred during or shortly after her lengthy misdiagnosis and delay of initial treatment. Our continuing medical needs are costing much more to our family and the insurance companies than if she had simply been diagnosed and treated with urgency at the beginning. I fought hard to save my child. Most of the children I witnessed in the psych hospital did not have mothers present. One psychiatrist wanted to release my child actively suicidal then the very next day another psychiatrist said she should go to residential bedding for at least a year with no other reasoning than, “She just must not be telling us something.” These doctors were both wrong. And, I am haunted by, not only what would have happened to my daughter, but the thought of how many kids who don’t have mothers fighting for them, who may be misdiagnosed laying in residential psych beds. This current attitude of nonchalance in our local government and medical community of PANS is ruining lives. Do better.

Vote for the passage of HB13 Hope! “It will assure medical assistance services and health insurance and a state plan for payment for PANDAS and PANS.” Personally knowing a family who has struggled with the cost of this lingering illness and the slow treatment, along with the heartbreak for these parents, I implore you to show you care about these children and families in our community and pass HB513 Hope! Thank you, Ms. Cazares

I am writing to request your vote for HB513. I have been a state resident and employee for many years as a teacher and professor in VA. I have technically "good" insurance, however when my child was first diagnosed with PANS/PANDAS at age 9 there was no insurance coverage for the testing and treatments needed. It took 5 years to get a diagnosis (out of state) and paying out of pocket nearly bankrupted me because VA did not provide insurance coverage for PANS/PANDAS. 9 years later VA still does not mandate insurance coverage for PANS/PANDAS. Virginia takes pride in it's educational and well trained university hospitals and medical offerings; however The Commonwealth falls short in this instance, due to not providing insurance coverage for this condition. VA needs insurance coverage for this condition for children and adults with PANS/PANDAS (much like we now provide to those with autism and are looking to provide to those with long-covid in VA). The amount of time spent researching, traveling for treatments, working with insurance to complete appeals, and trying to budget for appointments and treatments that are not covered/fully covered by insurance in Virginia is so much, that I now work part-time. The longer that a child does not receive medical treatment the worse the condition can become and irreparable damage can occur that might have been preventable. We are seeing more and more children with this condition in VA schools and we should be concerned that children are not getting proper diagnosis and medical treatments in VA. Families have left VA due to this lack of insurance coverage. Virginia's children and adults deserve to have this condition covered by their health insurance. We need this coverage so that doctors will diagnose and prescribe treatments IN VA and so that we can draw highly trained medical professionals with expertise in this condition IN VA to provide care IN VA (and eventually train more professionals IN VA). VA can start with voting for mandated PANS/PANDAS insurance coverage. Insurance coverage will have a direct positive impact on individuals, families, employers, medical, and educational facilities in our state. Please vote in support of HB513.

PANDAS/PANS is a devastating illness affecting young people, triggered by common infections like strep and the common cold. The immune system mistakenly attacks healthy brain tissue, leading to disabling symptoms and even loss of life. Left untreated, it can result in lifelong disability, impacting individuals and placing a burden on schools, police, and healthcare systems. PANS and PANDAS don't discriminate; if you know a child or a young person, this bill affects you. My daughter developed PANDAS/PANS at five, experiencing sudden and severe symptoms—anxiety, depression, tics, rage, cognitive decline. Her school was baffled, specialists were uncertain, and insurance concerns delayed treatment, pushing the disease to a point where she couldn't function. PANDAS/PANS is treatable and curable, but many Virginia families face needless anguish due to misdiagnosis. Despite research and medical necessity, Virginia insurers deny prescribed testing and treatments, burdening families and creating an unsustainable situation. It took five months to get my daughter treatment, but I know of Virginia families where it took ten years or more. Can you even imagine that? Since PANDAS/PANS is treatable and curable, the anguish VA families experience every day could easily be avoided. PANDAS/PANS is not a rare disease. It is a rarely diagnosed disease. The Virginia Alliance for PANDAS/PANS Action advocates for insurance coverage, preventing lifelong disability and loss of life. The cost of inaction is high, burdening schools, police, healthcare, and insurers. Passing HB513 aligns Virginia with states like Maryland and Arkansas, addressing the urgency of timely treatment. HB513's referral to HIRC, with a 24-month deliberation, contrasts with the urgency of PANS/PANDAS cases. Children with PANS and PANDAS simply do not have this kind of time. In the most extreme cases, a 24-month turnaround time can be a death sentence. VA4PA parents know, because we are witness to this terrifying truth every day. The PANS/PANDAS and Other Neuroimmune Disorders (POND) Brain Bank at Georgetown Medical keeps the record of this devastating reality. My daughter's struggle with PANDAS/PANS underscores the need for timely access to treatment. No child should endure such pain when effective solutions exist. We advocate for insurance coverage as soon as possible, benefiting affected children, our communities, and the economic prudence of insurance companies.

Our family’s story is tragic and unfathomable on so many levels, yet it’s not unique to anyone who has a child with PANS/PANDAS. Losing your child intermittently on a daily basis to a disease with viable treatment options—treatment that is AVAILABLE, yet inaccessible, can only be described as inhumane. Had prescribed IVIG therapy been accessible at time of diagnosis, permanent brain damage could have been prevented for our son. His immunologist at VCU Childen’s Hospital prescribed IVIg therapy and insurance denied him access to this life-saving treatment. His disease state progressed exponentially with each subsequent infection, rendering him incapable of functioning in a school or home environment. Soon after the insurance denial, our son jumped out of the cafeteria window at Maybeury Elementary School; he had another flight episode the following day, so we no longer felt comfortable sending him to public school. This is child who was a ZERO behavior problem; he was beloved by his peers, his teachers, and his school administrators. The cost of inaction is both human and fiscal. At the expense of tax payer dollars, our son was on homebound for the remainder of that school year. The human impact was that our son was medically incapable of experiencing joy (or functioning without 24 hour supervision) for over two years. Because of the episodic nature of the disease, my child would resurface on occasion as ask, “If you tell me this will eventually go away, I can endure the pain mommy. Will it ever go away?” He could be overheard in his bedroom sobbing and screaming over and over again on repeat, “I’m missing out on my life. I’m missing out on my life.” These children are dying, figuratively and literally. Children’s lives will continue to be lost because they cannot endure the unrelenting relapse/remitting episodic flares. I’ve cried countless nights praying that my child’s brain would not be yet another brain added to the Pond Brain Bank, research associated with Georgetown University; a handful of brains from children who have succumbed to PANS/PANDAS reside in the state of Virginia. Please vote to pass HB513 to prevent other Virginia children from enduring this unimaginable, PREVENTABLE disease progression, causing permanent disability and loss of life. If you refer to the HIRC, please expedite the study process. My son suffered irreparable damage waiting two years for treatment. Virginia children and their families need not suffer the same tragic story as our family. Moreover, the implications in delay will exponentially increase the fiscal costs incurred by the state of Virginia. Swift action will save lives and Virginia tax dollars.

Our children in Virginia need help. PANS/PANDAS affects 1 in 200 children. Its effects can be devastating on a child and their family. This is an inflammatory condition that can cause severe mental deterioration and there is treatment. We need more awareness, more providers treating this condition and better insurance coverage to support these children and families. Medical knowledge has vastly improved on this condition and now we need the community and insurance companies to support. This has affected my child and fortunately we have the knowledge and resources to obtain help but many other families are unable to due to lack of insurance coverage. Our community needs this bill.

In Dec 2019, my 9 year old daughter suddenly changed after completing (or what we thought) a course of antibiotics for strep throat. She went from a bright, happy kid to a dark, sad, sleepless girl with intense intrusive thoughts, UTI like symptoms, a tic, and OCD. She refused to go to school. She threatened to hurt herself and us. She was afraid to leave me. As you can imagine, this was terrifying for all of us. We took her to her pediatrician, who was compassionate at first, but then told us she couldn’t help us and to take her to a psychiatrist. We knew that wasn’t the right move. Someone suggested she may have PANDAS and our quest began to get her properly diagnosed and treated, all in the midst of a new “pandemic” in the news. We were lucky enough to happen upon a functional pediatrician who ran a myriad of tests and discovered why/how she got sick and treated her, which was an expensive out of pocket expense and very time consuming. But, so very worth it. We finally had our daughter back. Since then, I’ve personally spoken with dozens of families in VA who struggle to get proper diagnoses and treatment after noticing sudden onset of depression, OCD, and other debilitating symptoms in their kids. It’s so hard to find a practitioner that knows what to do. It’s time consuming, so expensive, and such a hardship on everyone in the family. We are so scared for our kids. Now, almost 4+ years later, we think our youngest has PANDAS. Again, we’ve had challenges finding someone to properly diagnose and treat him. He’s been sick for 4 months. PANDAS is not so rare that we should still be begging clinicians to listen to us. This diagnoses needs to be recognized so clinicians can learn about the disease process, how to properly diagnose and treat, and so that we can rely on insurance to cover treatment. Thank you in advance for passing this bill for my family and the other kids and families suffering in VA.

This is a recognized condition and should qualify for coverage. I have watched so many families struggle.

Last March, my recently turned 3 year old had a sudden case of OCD that worsened over the next few weeks and became a complete nightmare. My son was no longer himself- it was devastating. After reaching out to my pediatrician with specific examples, we were looking for an occupational therapist to help diagnose him and treat him. It was unclear to both of us if he was displaying signs on the spectrum or raging toddler hell. At the beginning of June, my college friend and I were texting and talking about our kids. When I mentioned some of the issues we were having with my son, she told me to look up PANDAS. My heart both jumped with joy and sank at the same time. He checked every single box on the PANDAS list so I contacted my pediatrician who responded in agreement and put him on a short trial of antibiotics while we waited to get in with a PANDAS specialist. Lucky for us, he showed unbelievable response to the antibiotic but we had no luck getting on the schedule with a specialist. Finally at the end of July, Dr. Jaffe called me out of the blue on a Sunday to tell me he would see my son but not for another 6-8 weeks due to a full schedule. Meanwhile, he prescribed 3 months of antibiotics to my pediatrician who filled the request while we waited for an appointment. I’m the lucky one. My son is the luckier one. I write this because we think we caught this early enough that we may have gone through the worst already. But that’s unknown and most parents of kids with PANDAS are struggling to get tests, therapies, medicines, and a medical professional who knows and understands what is going on and who can offer a safe place to provide treatment. I was so desperate back in March. There was clearly something terrifying happening to my child and I (and my pediatrician) were getting pushed aside. These kids’ brains are being attacked. Their bodies are in pain and often the solutions are simple if treated quickly. PANDAS needs to be recognized by the medical community, our educators, our mental health providers. While help can look different for every kid, it is our duty as adults to care for these kids- to protect them!

We need to vote YES on HB513. My son’s friend was diagnosed with PANS/PANDAS when he was in 5th grade. The last 2 years have been an emotional and financial tsunami for this child and his family. This boy went from a happy, engaging, thriving 10 year old who played sports and thrived in school to a pre-teen that had severe brain disfunction and a body riddled with illness. The out of pocket cost is hundreds of thousands of dollars to provide treatment, and all of this can happen to anyone! This disease and cost does not pick favorites. Everyone has a chance . So let’s vote yes, and give everyone the chance to help survive this awful diagnosis.

I’m writing with regard to HB513 as a resident of the State of Virginia and father of a child who has suffered tremendously over the last two years due to PANS/PANDAS. If it were not for the expertise and drive of my wife and getting the best possible care and having economic means to do so, we would be in a very dark place as many Virginians probably and already are, especially given the many hurdles and challenges to get appropriate medical coverage and care. I have honorably served my country domestic and abroad. Today I ask you to vote yes on HB513. We put our children in your hands for you to assure that their health will protected and guaranteed. HB513 in not a simple health bill, for our children it is a life bill. Their lives depend on it. We cannot wait to decide on this bill. Time for this bill is not counted in days but in livelyhood of Virginia children. The HIRC study period must be expedited!

My name is Darby Wiley I am commenting on bill HB513, Hope. I was diagnosed with pandas in 2020. I have gone through a lot of medical treatments and taken dozens of types of pills over the past few years. All of these treatments have saved my life, unfortunately we had to pay out of pocket. My mom's a school teacher and my dad works two jobs. We had to start a go fund me just to pay for ONE treatment. I was only 12/13 at the time. I shouldn't have been asking everyone I knew for money just to be able to live. Pandas/pans is life threatening. I know 4 people in my personal life with PANS or pandas, and all of us have attempted suicide because of or related to the fact we cost our parents so much money. All of these people where under 13 when they did it, including myself. This is not okay. Children shouldn't be KILLING THEMSELVES to help their parents financially. If pandas treatments aren't covered by insurance, you are threatening the lives of so many. You are causing children to attempt to take away something so sacred-their own life. It shouldn't be a question. I hope you make the right decision. The children are counting on you.

I’m writing with regard to HB513 as a resident of the State of Virginia and someone who has been profoundly impacted by the disorders the bill addresses. PANS and PANDAS typically hit kids and young adults following an infection, such as strep throat or even a cold. The immune system mistakenly attacks healthy brain tissue, resulting in life-altering brain inflammation and disabling physical and mental ailments. Early diagnosis and treatment are critical to help patients recover. Without treatment, PANS and PANDAS can result in lifelong disability, rendering individuals unable to function in society, and can even lead to loss of life. My daughter’s life was turned upside down three years ago when she became severely ill following a brief, unknown illness. She went from being a straight-A IB and AP student and an elite athlete to being bed bound and unable to read or do basic math, sleep and often-times talk, walk or eat without assistance, while also experiencing extreme neurological pain.  We searched desperately for a diagnosis and treatment as we watched our daughter slip away. We saw infectious disease, ENT, neurology, chronic fatigue, cardiology and other pediatric specialists in three states–a total of 12 doctors, and none able to correctly diagnose or treat our daughter. We were told to stop testing but thankfully persisted. Doctor #13 finally identified a number of bacterial and viral infections that by this time had become chronic and needed urgent treatment. By that point, the untreated illnesses had triggered severe PANS.
 Since then, our battle to treat her underlying infections and neuroimmune disorder has been hindered at nearly every turn by our insurer’s denial of prescribed treatment–with negative impacts on nearly every aspect of our lives. We have spent a fortune out-of-pocket, have gone into debt and have had to rely on the goodwill of relatives to help us financially. And we have “good insurance.”
 Our case is not unique. This storyline plays out almost verbatim with families throughout the state. Some have even had to wait 10 years for their insurance to cover treatment, despite extensive published research and the clear medical necessity of those suffering from PANS/PANDAS. This denial of doctor-prescribed testing and treatment is literally robbing young people of their lives and creating an unconscionable and unsustainable burden on them and their families.  Virginians diagnosed with PANS/PANDAS and their parents DESERVE BETTER THAN THIS—not a lifetime of pain, disability, debt and symptom management. Please ask for an emergency fast-track review of HB513 by the HIRC. Our children’s lives are on the line and the maximum 24-month HIRC turnaround is too long. Children with PANS and PANDAS simply do not have this kind of time. Delayed treatment causes progressive brain damage and increases the likelihood of permanent disability and dependence on their parents and the state.  I hope I can count on you to request an urgent, expedited review by the HIRC, and when the bill is reintroduced, to pass it with the support it deserves. Thank you.

I am writing to ask that HB513 be passed without issue. My daughter was diagnosed with PAND in 2020. She has been seen by specialists that include neurology, immunology, nutritionist and therapist. In 2022 she required plasmapheresis to help her symptoms that debilitated her life. In 2023 she required further advanced treatment and received IVIG therapy. The combination of those 2 therapies have truly saved her life. She is back at school, engaging with her friends and has a will to survive. To say her treatments have been expensive is an understatement. Her IVIG was not covered by insurance and was denied 3 times before we decided to pay out of pocket, 1600 dollars. Please, for my daughter and other children pass this bill and give our children the treatment they require and deserve.

Our family has been living the “nightmare” that PANS/PANDAS is for over five years. Our son was diagnosed with PANS at age 5 in 2018 and our daughter was also diagnosed 4 months after him with PANDAS at the age of 3 1/2. We have been fighting ever since to find the right doctors, and treatments, and facilities, and have fought thousands of hours with insurance even when we have found the “right” treatments only to be denied full coverage. ALL of our PANS/PANDAS doctors will not be covered by insurance and we have spent thousands and thousands of dollars on doctors, therapists, compounded medications, IV antibiotics, IV steroids, IVIG and we know for a fact we would not still be living this nightmare if insurance had covered their doctors, diagnosis, and treatments. Our children have lost the best years of their “childhood” and honestly we don’t even know what their future with look like now because they have developed lasting cognitive/emotional damage. I had to quit my job as a Kindergarten teacher, to take on the full job that is taking care of two chronically sick children and managing their care. I would love to get back to teaching and “helping” shape our future generations but until VA steps up and gives our children the fully covered doctors and treatments their need that will never happen. Our children are running out of time, they deserve so much better. In the words of my 8 year old daughter, “Why isn’t there a St. Jude’s for PANS/PANDAS families? Why won’t insurance listen to my doctor? Why doesn’t anyone want to help us get better?”

I have been a registered nurse for eight years while my husband has been a police officer for the same amount of time. We have devoted our lives/careers to care for and protect others. We “lost” our son in 2022, so to speak; he was 5 years old when he became unrecognizable to us. We have fought tooth and nail to get our precious boy back. Since PANS/ PANDAS isn’t an acceptable diagnostic code to insurance in our area, we have spent over 40K in the last 1.5 years to save him. To do so, we have had to sell our brand new house, our boat and our cars- we would do it all over again if we had to. While we’ve suffered so much, and also lost so much, our son’s health and well being is our priority. But this disease needs to be recognized and funded for what it is from insurance companies so that doctors are more willing to accept the diagnosis.

Partners in Virginia Oncology Associates are in support of HB 1006 to prohibit mandatory white bagging & brown bagging requirements from payers. Cancer treatment by medical oncologists is now largely outpatient and is carefully coordinated with radiation and surgery. Many patients with Cancer are treated with concomitant radiation and chemotherapy. This requires that both occur on the day. Curative anticancer therapies for breast and colon patients must be given within a tight window after surgery in order to achieve the curative intent. Oncologists need to be able to assure that the preparation and administration are so that critical time windows can be met and the therapeutic benefit can be achieved. From a safety standpoint a majority of patients who receive chemotherapy need to receive white blood cell growth factor the day after chemotherapy. If the dose is not given in time, the patient is at significant risk of serious, potentially life threatening infection. Clinical changes may necessitate changes on the day of treatment and the physician needs to be able to accommodate the change with a change in therapy. In such situations, waste brown/white bagging would force the patient to wait for another time when the new regimen can be obtained and the originally intended drugs would be wasted. For these patient care reasons we support the prevention of white bagging and brown bagging by insurers who want to drive business to payer owned facilities. Thank you for the opportunity to address our concerns.

Thank you for your time. HB104 _ This bill allows a pharmacy to not fill a prescription if the PBM does not reimburse the pharmacy for the product. No one wants to turn away a patient, but if we are to stay open to provide service we have to be profitable. many times we pay $1000 and get reimbursed $950 the contracts we have to sign (no negotiation allowed) do not allow us to explain to the patient that can't afford to fill the Rx. If we continue patients will lose access to all medications because we will be forced to close. With rising costs and decreased reimbursements pharmacies in my area are already closing and more will come. This bill doesn't say we have to not fill a prescription it allows us to use our discretion. Odds are I will still choose to take care of these patients but won't be in jeopardy of repercussions from the PBM HB1006 Freedom of Choice. We are asking for the market to allow patients to decide where to get their prescriptions or medical devices. What could be easier to support. This would allow patients to choose with out any monetary penalty or reduction in reimbursement for choice. Patients know which providers and business have their best interest at heart at should be allowed to make that choice. Thank you for your time.

Comments Document

Please support HB 1006 (Del. Wachsmann) This bill supports the Freedom of Choice, delivery of prescription drugs or devices: Insurers cannot require or incentivize a prescription drug or device to be sent directly to a healthcare provider or specific pharmacy or residents of such. Currently, there are clinician-administered medications that must be acquired through a preferred pharmacy designated by the manufacturer. As a result, there are delays from when the provider identifies the need to start therapy to when the pharmacy working with the clinic or provider’s office receives the medication, in addition to concerns with the integrity of the supply chain/ transportation issues. Thus, for patients requiring clinician-administered medications, it removes the bureaucratic “middle person” and allows for provider’s offices to order the medications directly that they have medically deemed appropriate for their patients. The current process negatively impacts our patients with delayed care for urgent treatment changes, delayed treatments due to payer benefit requirements and difficulty in care coordination. Imagine a restaurant where everyone with a reservation has sent bags and boxes of raw food and ingredients from numerous vendors for the restaurant's staff to prepare and cook. This is tantamount to what hospitals and clinics face when payers implement white-bagging policies for medications. ASHP strongly opposes white bagging because it bypasses health-system formularies, safety checks, and care planning processes. In a March 18, 2021 message to members, ASHP stated that white bagging threatens practices that healthcare organizations have established to keep patients safe and hinders the ability of pharmacists to ensure medication and supply chain integrity. (Am J Health-Syst Pharm, 2021;78(12): 1029-30.) Please support HB 1006 and reduce the bureaucratic burden involved in obtaining needed medications for our patients. Sarah M. Gaffney, PharmD, MBA, BCPS Member of the Virginia Society of Health-System Pharmacists

Comments Document

ASK: Support HB 1006 (Del. Wachsmann) This bill supports the Freedom of Choice, delivery of prescription drugs or devices: Insurers cannot require or incentivize a prescription drug or device to be sent directly to a healthcare provider or specific pharmacy or residents of such. Currently, there are clinician-administered medications that must be acquired through a preferred pharmacy designated by the manufacturer. As a result, there are delays from when the provider identifies the need to start therapy to when the pharmacy working with the clinic or provider’s office receives the medication, in addition to concerns with the integrity of the supply chain/ transportation issues. Thus, for patients requiring clinician-administered medications, it removes the bureaucratic “middle person” and allows for provider’s offices to order the medications directly that they have medically deemed appropriate for their patients. The current process negatively impacts our patients with delayed care for urgent treatment changes, delayed treatments due to payer benefit requirements and difficulty in care coordination. Please support HB 1006 and reduce the bureaucratic burden involved in obtaining needed medications for our patients. Jennifer Purdy Member of the Virginia Society of Health-System Pharmacists Attachment: information on the harms of "white bagging"

This bill supports the Freedom of Choice, delivery of prescription drugs or devices: Insurers cannot require or incentivize a prescription drug or device to be sent directly to a healthcare provider or specific pharmacy or residents of such. Currently, there are clinician-administered medications that must be acquired through a preferred pharmacy designated by the manufacturer. As a result, there are delays from when the provider identifies the need to start therapy to when the pharmacy working with the clinic or provider’s office receives the medication, in addition to concerns with the integrity of the supply chain/ transportation issues. Thus, for patients requiring clinician-administered medications, it removes the bureaucratic “middle person” and allows for provider’s offices to order the medications directly that they have medically deemed appropriate for their patients. The current process negatively impacts our patients with delayed care for urgent treatment changes, delayed treatments due to payer benefit requirements and difficulty in care coordination. As a pharmacist at Children's Hospital of The King's Daughters I encounter this issue frequently with novel expensive medications that are imperative for the care of children with often rare and life-threatening diseases. Due to the high cost, insurance companies will strike a deal with a particular specialty pharmacy and require that the medication be acquired only from that pharmacy, even when the medication needs to be prepared and dispensed by a hospital pharmacy. For medications that are given via an intravenous infusion or intrathecal administration (directly into the spinal fluid), there are commonly special storage and handling considerations, as well as the need for additional dilution or other such preparation under sterile conditions by highly skilled and trained individuals to ensure the medication can be administered safely to the patients. When the medication is "white bagged", the specialty pharmacy that "dispensed" (took a vial off a shelf and put a label on it) the medication is the one who gets paid, while the hospital - who is now required to do extra work to track down a patient-specific shipment, ensure it is stored separately from the hospital stock, and used for the correct patient - is not able to bill for any of the work being done. We have also encountered many delays in care due to shipments being delivered to the incorrect location/not being stored appropriately that have resulted in these high cost medications having to be thrown out, causing further delays in patient care while awaiting another dose being sent. This process ultimately wastes healthcare dollars rather than saving any in the long-run and most of the time does a disservice to everyone other than the insurance company and the specialty pharmacy/manufacturer. Please support HB 1006 and reduce the bureaucratic burden involved in obtaining needed medications for our patients. Thank you for your time and consideration, Christina Hellauer, Pharm.D., BCPPS Pediatric Clinical Pharmacy Specialist and Member of the Virginia Society of Health-System Pharmacists

As an oncology professional and your constituent, I urge you to vote House Bill 1006 out of the House Labor and Commerce Subcommittee #1, to ensure cancer patients have timely access to physician-administered drugs. Mandatory white bagging policies and all instances of brown bagging are inappropriate in cancer care and can jeopardize the delivery of high-value, high-quality care. These policies remove the physician’s ability to control the preparation of drugs as the drug is shipped from a payer-owned or affiliated pharmacy either to the physician or directly to the patient to transport to their physician. This prevents oncologists like me from adjusting the dosage due to clinical circumstances, such as my patient’s lab reports. Day-of treatment changes can lead to a life-threatening delay in care if I must place a new order, requiring my patient to return on a later date to receive their treatment, even if my practice has inventory immediately available. I applaud efforts to ban payer-mandated white bagging and all instances of brown bagging to ensure cancer patients have timely access to cancer care. Additionally, if treatment plans are modified on the day-of treatment, my practice must dispose of the drug as an unused portion cannot be used for a different patient. This creates unnecessary waste and additional burdens as many of these drugs are toxic and require special handling when discarded according to state and federal requirements. Mandatory white bagging policies and all instances of brown bagging can cause discontinuity and delays in care for patients as well as increased waste and administrative burden for oncologists like me. Let’s work together to ensure cancer patients can access physician-administered drugs in a timely manner. Please vote HB 1006 forward and help patients with cancer.

I am submitting comments in support of HB1006. HB1006 would prohibit the practice of payers mandating that a patient obtain a medication through a pharmacy for subsequent administration by a clinic/provider vs obtaining the medication from the supply of the clinic/provider. As a practicing pharmacist and health care administrator for Riverside Health System, I have seen first hand over the last several years how this practice can negatively impact patient care, add unnecessary waste to the healthcare system, increase patient stress and increase the burden on clinic staff. I will focus my comments primarily in the area of cancer care, but the context is similar for other therapy types. When treating cancer patients, the decision to treat and the drug and dosage are determined based on patient laboratory results and patient response to therapy. That treatment decision is often made the day of treatment once the labs are resulted. When a medication is provided by an outside pharmacy and shipped to the clinic for subsequent administration, the medication or dose provided may not be what is needed to treat the patient. Since the medication is not returnable, the medication is wasted, adding unneeded waste to the system. Patient care is also delayed since the medication needed is not on hand. Maintaining medication administration schedules is critical for optimal outcomes in cancer care-this will would protect this right for patients. The other issue that is commonly seen with this practice is the medication not being received in time for the scheduled treatment. The coordination required with an outside pharmacy provider adds stress to the patient of not knowing if their medication will arrive on time. We have had patient cases where Neulasta was not received in a timely manner and the patient experienced neutropenia, resulting in hospitalization and antibiotic care, both of which added unnecessary costs as well as jeopardized patient care. The last challenge I would like to highlight is the integrity of the drug itself when sent from an outside pharmacy. The drug is most often sent through a shipping vendor (FedEX, UPS). Many of the products require special temperature which many not be maintained, especially with the shipping delays often ween with these vendors. There is no mechanism to identify temperature excursions (high or low) that may impact the integrity of the medication that the patient receives. Thank you for allowing me to submit comments in support of HB1006.

I am reaching out to you as a member of the Virginia Society of Health-System Pharmacists on bills that will support the important access to the resources involved in supporting patients. Ask #1: Support HB 1006 (Del. Wachsmann) This bill supports the Freedom of Choice, delivery of prescription drugs or devices: Insurers cannot require or incentivize a prescription drug or device to be sent directly to a healthcare provider or specific pharmacy or residents of such. Currently, there are clinician-administered medications that must be acquired through a preferred pharmacy designated by the manufacturer. As a result, there are delays from when the provider identifies the need to start therapy to when the pharmacy working with the clinic or provider’s office receives the medication, in addition to concerns with the integrity of the supply chain/ transportation issues. Thus, for patients requiring clinician-administered medications, it removes the bureaucratic “middle person” and allows for provider’s offices to order the medications directly that they have medically deemed appropriate for their patients. The current process negatively impacts our patients with delayed care for urgent treatment changes, delayed treatments due to payer benefit requirements and difficulty in care coordination. Ask #2: Support HB1402 (Del. Reaser) & SB660 (Del. Foy) This bill increases transparency of the rebates and fees between the pharmacy benefits manager (PBM) and health benefit plans such as aggregate amount of a pharmacy benefits manager's retained rebates, as defined in the bill; a pharmacy benefits manager's aggregate retained rebate percentage, a pharmacy benefits manager's retained rebate percentage for each health benefit plan; and the aggregate amount of administrative fees received by a pharmacy benefits manager. Currently, PBM fees are variable and it is difficult to navigate in understanding patient’s access challenges. VSHP supports the intent of these bills to provide more transparency and accountability in the rates and reimbursement by PBMs

I am delighted at the opportunity to comment on how white bagging by limiting patient’s choice in access to drugs results in dangerous delays in their care. Our office’s experience with this mandated pharmacy benefit is typical for the other practices I have talked to throughout Virginia and nation. Chemotherapy drugs are dosed each time based on the current patient status with respect to their lab work, height and weight. This real time calculation allows maximal biological benefit. On a typical day about one third of my patients require dose adjustments. White bagging first typically results in a several week administrative delay in starting life saving therapy, then by predetermining and shipping a patients doses, it misses the typical clinical changes occurring over months of life and need for dose adjustment, these predetermined and shipped medications cannot be adjusted at the site for the new status and as such are wasted and a further delay occurs while new medications and doses are shipped. As expected, delays in cancer care across a wide variety cancer types has been consistently shown to result in poorer survival and by forcing patients into a pathway of healthcare delay, they are choosing for our patients a pathway of poorer outcomes. I ask that you please support HB 1006.

Comments Document

I am reaching out to you as a member of the Virginia Society of Health-System Pharmacists on a bill that will support the important access to the resources involved in supporting patients. Support HB 1006 (Del. Wachsmann) This bill supports the Freedom of Choice, delivery of prescription drugs or devices: Insurers cannot require or incentivize a prescription drug or device to be sent directly to a healthcare provider or specific pharmacy or residents of such. Currently, there are clinician-administered medications that must be acquired through a preferred pharmacy designated by the manufacturer. As a result, there are delays from when the provider identifies the need to start therapy to when the pharmacy working with the clinic or provider’s office receives the medication, in addition to concerns with the integrity of the supply chain/ transportation issues. Thus, for patients requiring clinician-administered medications, it removes the bureaucratic “middle person” and allows for provider’s offices to order the medications directly that they have medically deemed appropriate for their patients. The current process negatively impacts our patients with delayed care for urgent treatment changes, delayed treatments due to payer benefit requirements and difficulty in care coordination. Personal Response As you may be aware, white bagging is a policy enforced by many insurance companies requiring medications to be dispensed through third-party specialty pharmacies rather than being directly supplied by hospital pharmacies. While this may seem like a minor procedural difference, it has profound and detrimental effects on patient care, medication safety, and healthcare efficiency within our Commonwealth. In my role, I have witnessed firsthand the significant gaps in care that arise from this practice. Medications critical for the treatment of serious conditions are often mishandled, improperly stored, or delayed in delivery due to the convoluted distribution channels mandated by white bagging policies. Just in the past year, our team at the University of Virginia Medical Center has encountered numerous instances where we were unable to administer life-saving medications to patients in a timely manner due to these issues. This is not only distressing for the patients and their families but also places an unnecessary burden on our healthcare providers, who are forced to navigate a labyrinth of logistical challenges to secure the medications our patients need. Moreover, white bagging introduces significant inefficiencies into our healthcare system, with countless hours spent by healthcare professionals attempting to track down medications, verify their integrity, and coordinate their administration. These are hours that could be far better spent in direct patient care or in other activities that enhance the quality and effectiveness of the healthcare services we provide. In supporting this bill, you will be taking a stand for the health and well-being of the people of the Commonwealth, ensuring they have timely access to the medications they need without the unnecessary complications and risks introduced by white bagging. See attached handout on the harmful practices of “White Bagging” Home Address: 365 Leaping Fox Ct, Charlottesville, VA 22902 Sincerely, Brian Spoelhof, PharmD, BCPS, BCCCP Masters of Bioethics Candidate, Harvard Medical School

HB1006 is the best

I'm the infusions coordinator for roughly 8+ different specialty departments with Carilion Medical Center. I do insurance authorization requests for all of those departments. Some of the main issues that I see (from my end) with utilizing specialty pharmacies are: 1) potential quality concerns (was it received in a timely manner? was it shipped correctly? did it lose any efficacy due to us not being able to control the quality/shipping? temp controlled correctly?), 2) time the patients have to wait on the specialty pharmacies to contact them, gather information, get the prescriptions from the offices & copays and then ship the drugs (instead of us having the ability to already have most drugs on site so it doesn't delay the care we're committed to providing to our communities - think how you would want your loved one to be cared for and not delayed unnecessarily) and 3) patient care (at times there are longer delays due to having to switch between specialty pharmacies, phone 'tag' between them & patients and then waiting on the drugs to finally get shipped to the infusion centers. All of those items are the major drawbacks to being required to utilize specialty pharmacies and not be able to treat patients as swiftly as needed, with quality control at all levels without depending on questionable third parties/shippers who may or may not care about how important that drug could be to the human being on the other end of that call. I think that treating these patients with the dignity they deserve and giving them a choice not to be 'required' to utilize an outside party in their very personal care and treatment, without the anxiety that they get due to the process and others knowing their medical information and putting the care between the providers they choose and the medications that can help them be able to live their life BETTER is not something that should be controlled by third party companies / specialty pharmacies thats only goal is to make money instead of making the communities we serve a better place for patients to be cared for with sincerity and compassion. The providers, hospitals, etc should be able to care for the patients without interference or intrusion and without delay. Giving the 'power' back to patients and providers will ensure better care in a timely manner, without anxiety to the patients or their loved ones. Thank you.

I am asking you to please approve HB 1006. I am a cancer patient and advocate on behalf of cancer patients nationally through Community Oncology Alliance and our state association Virginia Association of Hematologists and Oncologists. My mom was diagnosed with breast cancer for a second time in her life back in the summer of 2018. She was being treated at Cancer Specialists of Tidewater, Ltd. where I had worked since 1997. Her oncologist treated her with Ibrance which was a miracle drug that worked on stopping the progression of her disease by 17 months. In 2019 she was to start on a new drug, Piqray which her oncologist had and could have immediately started treating her on. Unfortunately she was forced to have to get the drug from a specialty pharmacy chosen by her insurer. For weeks she fought along with our oncologist and me to get her the drug. Unfortunately after a few weeks, she received an envelope that contained Afinitor which was the wrong medication and had to be thrown away costing the health system thousands of dollars as it could not be returned. A week later she received a federal express envelope with another folded up empty envelope inside and nothing else. It took 38 days until she finally received her medication from a specialty pharmacy which if the insurance company would have allowed she would have been treated with on day 1 at her clinic. She wrote her story and wondered how much her cancer progressed during this time when she was unable to be treated due to the insurer requiring the drug to be filled by a specialty pharmacy. She wondered how many fewer weekends she had with her husband, children and grandchildren. She passed away less than 8 months later and unfortunately her story like so many others is lost because the system is not accountable for these delays and the impact it has on so many patient's lives. This story is common when an insurer/PBM requires a drug to be white bagged into a cancer center to be administered. Normally the physician's office already has the drug in inventory and can start treating a patient immediately but not when the insurer requires the drug to be shipped in from a specialty pharmacy. White bagging results in patient delays in receiving their drugs like what happened to my mom and thousands of dollars in wasted drugs when the drugs are stopped, changed, dose escalated or reduced, etc. Also, PBM's and insurance companies to do not send patients their drugs either when they cannot afford it which leads to additional delays in treatment. The patient has to pay their balance prior to the drug being shipped. Physicians help patients receive financial assistance and do not hold back on treating patients lacking the financial patient responsibility. Our great state of Virginia has freedom of choice and any willing provider laws and yet patients are not given the choice of where they receive their drugs but forced to comply with decisions made by the insurance company and PBM. This unfortunately leaves so many patients like my mom wondering "what if" they could have continued to receive their care in a timely manner in their physician's office and how their life might have been different. Please support patient choice by voting to support HB 1006. Thank you!

As a practicing oncologist in Virginia for 17 years and as the Practice Director for Cancer Specialists of Tidewater (offices in Suffolk, Chesapeake and Va Beach), I am writing in support of HB 1006. White and brown bagging create a huge burden on Oncology practices and, more importantly, on cancer patients. In these cases when insurance requires the use of either brown or white bagging, Oncology staff spends a burdensome amount of time coordinating medication authorization and then delivery of the drug rather than using traditional methods for drug acquisition. Physician and hospitals cannot guarantee that the medication received through this route has been appropriately stored and handled so that it can be given safely to our patients. This time to treatment delay causes harm to the patients as their cancer is left untreated for a period of time that is often outside of our standard of care. This delay in treatment also causes a significant mental toll with increased anxiety to the patients and their families in an already highly stressful time. In addition, changes may need to be made to the dosing due to blood counts or other specific patient toxicities. This cannot be done in real time with a medication shipped in this manner. This causes further delays (for a new dose to be shipped and likely a new authorization process). The drug must then be wasted which increases health care costs. with the usual drug acquisition process, the medication would be used for a different patient or could be restocked with the pharmacy. In addition, the local office must then pay for disposal of the wasted drug. I recently had a 33 yo diagnosed with breast cancer whose insurance required that Neulasta (which is a drug used to decrease the risk of severe infection due to chemotherapy) be shipped directly to her. When she received the drug, it was yellow. The product information specifically states that the medication should be clear. She brought it to the office (on 3 separate shipments) because she was concerned about injecting a tainted medication and the potential harm it would cause. We had to delay her treatment to get new shipments. Imagine yourself or your loved one in a similar situation. Given these issues, our practice policy is that we do not allow either brown or white bagging in our effort to provide quality cancer care to our patients. I hope that our General Assembly can prohibit this mandatory practice to protect cancer care for all Virginians. Sincerely, Amy Skorupa, MD

Comments Document

The Virginia Association of Hematologists and Oncologists (VAHO) and the Association for Clinical Oncology (ASCO) are pleased to support HB 1006, which would prohibit mandatory white bagging and all brown bagging requirements from insurers so that patients can obtain clinician-administered drugs from their health care providers, thereby preserving timely and consistent delivery of high quality, patient-centered care. VAHO and ASCO welcome the opportunity to be a resource for you.

HB385: there’s an importance and safety to having two man crews.. safety for the company and the public.

HB385: there’s an importance and safety to having two man crews.. safety for the company and the public.

Comments Document

Dear Chair Maldonado and Members of the House Labor and Commerce Subcommittee #1, On behalf of over 3 million Virginians living with chronic conditions, we are writing to thank you for considering HB1041, an essential bill to lower prescription costs for patients by requiring that Pharmacy Benefit Managers (PBMs) share negotiated rebates with patients at the pharmacy counter. Addressing the many barriers to care that PBMs create and how they impact our most vulnerable neighbors is a noble and necessary effort, and we respectfully ask for your support on HB1041. Across the board, pharmaceutical rebates for branded drugs average 48%, meaning vulnerable citizens are paying nearly twice the price for their lifesaving and life-sustaining medications than their insurance company pays for the same drug. This, despite the fact that these consumers have paid a premium for access to the insurance plan. The rebates are being kept by the PBMs, who negotiate drug prices and take a cut of each transaction, and insurers themselves who keep the lion’s share. Insurers will claim that they are retaining the rebates to keep premiums lower for everyone, but an actuarial study estimates that the increase in premiums would be less than 1% overall. Our most vulnerable populations living with chronic conditions are forced to overpay for their medications, oftentimes leading to rationing resulting in poor health outcomes or more tragic consequences, costing everyone more in both dollars and human suffering. We have dedicated our missions to understanding and fighting for the needs of patients, and we hope that our collective voice and plea for assistance will help to drive a favorable decision on HB1041. Please vote “yes” on this essential piece of legislation and prioritize patients over profits, thereby improving the lives of Virginians.

Comments Document

On behalf of the Alliance for Transparent and Affordable Prescription (ATAP) please find the attached letter in support of HB 1041. Thank you!

The people in the coalfields are already suffering from electric power bills of $1,100, $900, and $679 equal to what they might spend on rent here. We don't need shock and awe electric bills this could incur for captured ratepayers. This bill is a shocking and wretched bill. We will tell the people hereabouts about this bill and who sponsored it.. Nuclear energy is far more expensive than from real renewals which are far less risky financially, environmentally, and health wise. When they cluster the SMnRs...6 or so together it is not small... and they are not informing you they are thinking in terms of clusters. There are many community meetings on the projects Youngkin has for the coalfields...the SMnRs, the blue hydrogen and carbon capture and storage. Projects that will devour the funds we need on proven, real renewable energy such as solar and wind. Nuclear subsidies send utilities and their customers down a costly, 10-year rabbit hole, away from cheaper, market-driven, solar, wind, and battery storage - all available now. Competition with cheaper green power alternatives will likely result in project cancellation. “If SMRs are not ready to deploy in the next ten years, what are the implications?” says former Nuclear Regulatory Commission (NRC) Chairman Allison McFarlane. “…If, as a recent study showed, that SMRs will be significantly more expensive than solar photovoltaic (PV) and on-shore wind, and even geothermal, what will the marketplace look like in 20 or 30 years, when renewables will presumably be even cheaper?” Utilities win either way by scooping up front-end federal and state subsidies, then forcing ratepayers, as they have in the past (like the $600 million “recovered” from Virginians for the shelved North Anna #3), to take the risks and pay even if a nuclear SMR plant is never completed. While an SMR is defined by the U.S. Department of Energy as having a capacity of tens to hundreds of megaWatts. At the 500 mW limit this bill sets, a “small” modular nuclear reactor would be more than half as big as the largest nuclear reactors currently operating in Virginia. In a number of ways, this is no small thing. Please spare Virginians this burden. God help us. Please Vote ”NO” on HB-1491.

Support this, please.

Good morning to whom it may concern, I am the daughter of my father who has Parkinsons. I have now become a caregiver, on top of being a student, sister, daughter, and many other titles at the age of 20. My father was misdiagnosed with Parkinsons three times in his beginning stages, causing him to miss critical time in the beginning. If you did not know there is no cure for Parkinsons and there is no reversing it. Any time that is spent in physical therapy and the early stages are critical. Due to certain doctors, medical physicians and others. I have seen my father's health go left because others are not educated on the Parkinsons. They say its laziness, they say it's too much caffeine. Parkinsons attacks the nerves and muscles in your body. Individuals with Parkinsons are going to shake, they are going to take slow steps, that should not change their patient care. My father has Medicare part A, B, and C, is 100% disabled and has been told this twice, has served over 27 years, and he cannot get basic help from doctors. My father got told he could not attend physical therapy because they saw him walk in without a cane. This led to an ongoing battle with the parties involved to where my father had to switch physical therapist and doctors because they did not see the progress they wanted. Now he is in physical therapy 9 months out the year and will be for the rest of his life. Sometimes you wear glasses, sometimes you wear contacts, or sometimes you just go blurry vision that day. Your optometrist isn't going to take away your glasses, right? Sometimes you eat before going into the orthodontist, and they see the chicken nugget bites, or potato skins. Stuck to your teeth. They don't extract your teeth because, they think you don't take care of them, right? Why should an individual walking into a building without a cane, wheelchair, or walker. Change the need of their care?

Madame chair and members of the subcommittee, thank you for giving me the time to speak on this bill. Creating a benefits consortium will allow localities to reduce their benefits premium costs by partnering with other localities to share the costs spread amongst a larger group of beneficiaries not just in the locality they work in but neighboring localities. I would not be opposed if an amendment was brought forth to allow all localities to join the state in a single benefits consortium, thus spreading the costs out further to reduce the monthly premiums. For instance, In the City of Poquoson, the school board has recently discovered our monthly medical premiums will potentially increase by 12%. We are planning to give a minimum 5% bonus for all school employees this coming fiscal year. This increase in benefits will overshadow this fiscal year bonus. For our teachers that have a thankless job of molding our next future in the Commonwealth, I respectfully ask each delegate to please vote aye on reporting this bill.

Please consider this bill as it should help to spread the cost and reduce the amount that our educators have to pay for these benefits, which allows them to have higher pay. They deserve the best salary possible for their hard work and dedication to our future generations.

Comments Document

Chair Maldonado and Members of the Subcommittee: On behalf of the National Association of Mutual Insurance Companies (NAMIC), please find attached a letter regarding HB 1220. We thank you for your review and consideration. Respectfully, Matt Overturf Regional Vice President, State Affairs Ohio Valley/Mid-Atlantic Region