Public Comments for: HB1641 - State plan for medical assistance services and health insurance; pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections and pediatric acute-onset neuropsychiatric syndrome.
Dear Members of the Appropriations Health Subcommittee: I am writing as the Executive Director of The Alex Manfull Fund (TAMF) and as the mother of a child who died as a result of having PANDAS/PANS. I traveled from Portsmouth, New Hampshire to Richmond, Virginia earlier this week for the explicit purpose of supporting the Virginia Alliance for PANS/PANDAS Action (VA4PA) when they met with legislators about HB1641. I wanted to personally thank these delegates and senators for recognizing the critical importance of this legislation to patients and families who are affected by PANDAS and PANS and who, on the basis of reading the research on this disorder, decided to support and even sponsor the bill. I, personally, had the honor of joining VA4PA advocates in their meetings with five legislators and two legislative aides. I was bowled over by their knowledge of the bill and their informed questions about PANDAS/PANS as well as what the bill would do the help patients and families. In short, this bill can significantly reduce the often devastating impact of these disorders and, in fact, can save lives. My family and Alex's treating neurologist are confident that my daughter would be alive today if her treatment not been delayed. Until Alex developed PANDAS, she was a healthy, vibrant young woman with an exceptionally promising future. Passage of a bill like this one would likely have made the difference between life and death for Alex. Our non-profit organization is dedicated to supporting research, further educating clinicians, and raising awareness about these disorders. We are especially proud but profoundly saddened that the POND Brain Bank at Georgetown University Medical Center -- which TAMF was instrumental in establishing in 2022 -- now has brains or brain tissue from 10 donors who had been diagnosed with PANDAS/PANS. It is called the Brain Bank for PANDAS/PANS and Other Neuroimmune Disorders (POND). My colleague, Dr Galam Khan, a neuropathologist at Georgetown, also attended these meetings with esteemed members of the Virginia Legislature. In sum, bills like HB1641 ensure that these patients -- like my daughter -- receive timely doctor-prescribed treatment. I hasten to underscore that this legislation would cost $0.0046 cents per member per month. All the research, physician education, and awareness is for naught if timely and effective treatment is not ensured. Thank you for considering my input. Sincerely, Susan Manfull -- Susan Newman Manfull, PhD Executive Director and Co-Founder The Alex Manfull Fund.org H | 603 430-8694 M | 603 828-1766
I am writing to request your support for the approval and passage of HB1641 . This bill has the potential to positively impact so many families who are struggling with PANS/PANDAS through obtaining insurance coverage for treatments for this life-altering disorder and costs very little to implement. Please help our VA families who struggle with this disorder. I know several families who have moved because of lack of insurance coverage and I personally have had to go out of state for treatment and almost gone bankrupt at times trying to pay for treatments not covered for my family member and I am a state employee with good health insurance. Our children and young adults deserve to receive timely treatment covered by insurance in our state. Quick treatment helps the disorder not progress further and debilitate children further, which also saves money in areas of Education costs and disability-related costs. Please support and approve HB1641.
Good afternoon, My name is Kristina Nunnally, I am a PANDAS/PANS Advisory Council Member, Co Founder of the Virginia Alliance for PANS PANDAS Action and most importantly a mother to 4 children, diagnosed with PANS/PANDAS. I believe by now, you know and understand the devastating effects that PANS/PANDAS has on an individual and family is the loss of years of childhood and if left untreated the cost is the highest cost there could be which is the loss of a life. In December of 2024, The VA Board of Insurance presented the findings of JLARC and the Health Insurance Reform Commission from months of robust research, using the latest information on prevalence presenting their findings of prevalence of PANS/PANDAS which is estimated at 1/11,765 which in turn, came up with an estimated cost of less than half a cent, per member per month for coverage. And because the costs are so nominal, the HIRC even recommended unanimously to include all qualified health plans which includes Medicaid. One Virginia Medicaid plan already covers the cost for treatment of PANS/PANDAS which points to that these treatments are already included in the Essential Health Benefits and provided essential information and data that tremendously aided with the research that was done to come up with prevalence and cost of just less than half a penny, per member per month. The cost to not treat PANS/PANDAS is significantly higher, not just on state resources but it could be the loss of a life. Please vote yes, on HB1641
Good Morning! I urge you to support this important legislation and help ensure that children with PANDAS/PANS receive the care they deserve. This legislation will ensure children with PANDAS/PANS have timely access to necessary medical and therapeutic interventions, improving their quality of life and long-term prognosis. Early diagnosis and treatment are crucial for the best possible outcomes, but many families face significant financial barriers due to limited insurance coverage. Delays in treatment can lead to worsening symptoms, chronic conditions, and significant emotional and financial strain on families. Thank you for your time and consideration of this critical issue.
My 3 children were diagnosed with PANDAS 6 years ago. Only my middle daughter needs IVIG due to the seriousness of her condition. We are currently in the process of submitting our 4th appeal to BCBS. The emotional distress my child endures is paralleled by a physical toll, including an unyielding immune system that never shuts down. She takes four different medications just to sleep. The residual effects of this leave her fatigued and affect her daily cognitive abilities. Her condition disrupts her sleeping patterns, robs her of restful REM sleep, and results in frequent forgetting of daily occurrences. Her aspirations, such as attending college and engaging in normal teenage experiences, are continually undermined. This condition has robbed my daughter of her childhood. Emotionally and socially isolated, she is plagued by contamination OCD and sensory issues that prevent her from realizing a normal childhood filled with carefree milestones. Simultaneously, the demands of managing her medical needs have imposed relentless pressure on our family. The debilitating impact on my daughters physical and mental well being has mirrored onto us, manifesting in PTSD, anxiety/depression, and financial deterioration due to my compromised ability to work as a self-employed Realtor while navigating her many appointments, therapy sessions, and treatments. The spiritual and emotional burden we shoulder is colossal, threatening our family bonds and causing significant distress and other physical and mental health issues for our entire family. Despite multiple treatment attempts, including steroids and medications like Augmentin, Zithromax, Omnicef, Lexapro, and ReVia—which all either failed or caused adverse reactions—my daughter continues to suffer immensely. Our reliance on Seroquel and naltrexone provides some relief, yet without the continuation of monthly IVIG infusions, her symptoms persist and worsen. Without access to sustained IVIG treatment, my daughter's condition threatens to regress further. Her academic capabilities have drastically declined due to ADHD-like symptoms and memory deficiencies, while her social interactions and daily functioning are severely compromised due to persistent OCD and sensory overload. The chronic fatigue resulting from lack of restorative sleep only strengthens the case for immediate intervention. Studies highlight the increased likelihood of autoimmune conditions if robust treatment like IVIG is postponed, underlining the urgency of mandating insurance companies cover treatment. The emotional distress for my daughter and our family is palpable. Her once-joyful personality is overshadowed by her fears and isolation, as she spends her days confined to her bed, burdened by thoughts of despair. The disease not only affects her physically but has emotionally torn the fabric of our family apart, leaving us all struggling to cope with its heavy impact. As a mother and a fellow Virginian I am pleading for your support of this bill. I pray that none of you ever have to experience what we have been through the last 6 years. Thank you.
Please support the proposed addition of PANDAS/PANS to the conditions covered under Virginia's plan. Across the United States, legislative bodies have taken similar action to ensure access to diangosis ands treatment of these disorders. Early diagnosis and treatment absolutely reduces future healthcare costs, improves the functioning and quality of life for patients and their families, and also ensures school attendance for affected clients. Virginia is to be applauded for its legislative leadership through this action.
Good afternoon, I am a resident of Virginia, co-founder of the Virginia Alliance for PANS/PANDAS Action, Vice President of The Alex Manfull Fund, and above all a mother to a young person with PANS. There is little in life that prepares you for an illness as terrifying and debilitating as PANS/PANDAS. The utter shock of losing your beautiful child to an insurance system that puts profits ahead of health, even when kids’ lives are at stake, defies belief. Until it happens to you. And if you or someone in your family has ever had a cold or strep throat, this could happen to you. In PANS and PANDAS, the immune system mistakenly attacks healthy brain tissue, resulting in life-altering brain inflammation and disabling physical and mental symptoms. Early diagnosis and treatment are critical for full recovery. I know very well because I watched this happen to my daughter, who went practically overnight from a healthy, athletic A-student to being often unable to walk, talk, read and bathe. It took 13 doctors to finally get a diagnosis and treatment plan. Our relief was short-lived when we realized we had to fight our “good” insurance for standard-of-care treatment prescribed by her doctors at almost every step of the way. Denial of doctor-prescribed testing and treatment is literally robbing young people of their lives and creating a crushing burden on them and their families. According to the latest research, the prevalence of PANS/PANDAS is estimated at 1 in 11,765. The VA Board of Insurance, JLARC and the Health Insurance Reform Commission conducted months of robust due diligence, and using the latest information on prevalence, came up with an estimated cost of less than half a cent per member per month for coverage. And because the costs are so nominal, the HIRC even recommended unanimously including Medicaid. It’s hard to fathom that anyone would deny treatment to children and young adults when the costs are so negligible and the damage so extreme. What are the costs of inaction? Left untreated, PANS and PANDAS can lead to lifelong disability, rendering individuals unable to function in society, and can even lead to loss of life. Patients face unnecessary and expensive psychiatric hospitalizations while insurance companies deny access to necessary treatments. Desperate parents sell or refinance their homes to pay for treatment out-of-pocket. Families and patients are forced to move to other states that offer insurance coverage for treatment. Lack of early intervention burdens schools, police, and health care systems, as well as insurers, who pay for repeated emergency room visits, psychiatric inpatient stays, and other therapies that address only symptoms rather than the root cause. On behalf of the PANS/PANDAS patients and families across Virginia, I urge you to please VOTE YES on HB1641. Thank you.
YES to HB1641! Our six year old son was diagnosed with PANDAS in May of this year. We are just beginning our journey of wellness and it feels completely overwhelming. He is so young and has such a long road of treatment ahead of him. There are courageous providers in this state that are doing their best to provide physical and emotional treatment to PANS/PANDAS children, but families are left deciding if they should go into debt to pursue them. Voting YES to this bill will give our son and other PANS/PANDAS children in Virginia the financial support needed to access life altering treatment for a debilitating condition.
While just 2 of our 4 children have a PANS diagnosis, our family as a whole has felt the debilitating effects of this disorder for nearly 8 years now. I am a critical care nurse by trade, however, I was forced to leave my longtime and beloved nursing profession in order to care for my two sons as the symptoms and illnesses secondary to PANS began to overwhelm our family emotionally, physically and most certainly, financially. My boys have each suffered multiple medical as well as psychiatric hospitalizations. Our family has had to forgo the financial stability that accompanies a double income household in order to ensure the safest home environment possible for our boys when an infection causes extremely intrusive thoughts, including suicidal ideations and, at times (and devastatingly), attempts. Just this month we were forced to delay much needed IVIg treatments for my 12 year old son because our insurance, who lead us to believe would cover his 6 infusions over 6 months, ultimately only meant to cover one month of the infusion…we simply cannot afford to pay out of pocket for the remaining 5 infusions. Readily available widely accepted treatments should never be delayed or modified as a result of insurance technicalities or denials. My family joins the many families of Virginia in asking you to please vote “yes” to the HB1641 bill. Our children are counting on you.
Please vote yes for this bill. I have two sons with PANS and it would be a tremendous stress relief to not have to fight for coverage or figure out how to pay for medical bills completely out of pocket when they need treatment. I have seen first hand the impact on their health, physically and mentally and it’s affect on everyone in my family. My wife has stopped working to manage their care full time and be an advocate for their health. This bill would legitimize the care they need to receive and take away tremendous financial and mental health pressures that we endure throughout the year.
HB1641 -- Please consider passing this house bill. I have witnessed the struggles my friend and her daughter have gone through and continue go through due to PANS. It has costly expenses that burden families who are already struggling to understand the disease and effects all aspects of their lives. Time from work is missed, school is missed and families are carrying this burden all alone and it shouldn't be this way.
am writing to express my strong support for HB1641 and urge its swift approval. I personally know a family whose daughter has been deeply affected by PANS/PANDAS. Her struggles have been compounded by insurance denials for medically necessary treatments prescribed by her doctors. The delays in accessing care have not only caused immense financial and emotional hardship for the family but have also derailed her life in heartbreaking ways. This young woman was forced to delay starting college and miss many important milestones that should have been joyous and transformative. Instead, her family has spent years battling for coverage and trying to piece together the care she so desperately needs. It is crushing to see such a bright future placed on hold because of these unnecessary obstacles. By passing HB1641, we can prevent other families and young people in Virginia from enduring this kind of suffering. Please take action to ensure that children with PANS/PANDAS can receive the timely and effective treatment they deserve. Let’s provide them with the chance to heal and thrive.
I know someone personally affected by PANS and hope this bill helps those affected & their caregivers.
I know someone who adopted a child with this condition. It is heart breaking to have a child diagnosed with this condition. It is devastating to see the medical bills pile up. If we are supposedly Pro Life, we need to focus more on the needs of our children once they are born.
I support HB1641 and I support families, children, and young adults affected by PANS/PANDAS.
HB1641 Hope. Please support this bill. My son had a horrific time with PANDAS 5 years ago where it was life threatening. After being on antibiotics and getting plasmapheresis, he recovered and was able to have a normal middle school and high school experience and is now at a competitive college. We are so appreciative of the treatment he received and hope all children who suffer are able to receive help
Thank you for sharing the report
My family has been struggling with PANS/PANDAS for over 10 years. Both of my children are diagnosed with this debilitating condition. My son is currently fighting mycoplasma (walking pneumonia) which has led to debilitating Neuro symptoms, including OCD, anxiety, rage, school refusal, eating restrictions and many more symptoms. please help me family and others like us!
I have personally seen the impact of PANS/PANDAS on those affected and their families and request urgent support for HB1641.
It’s time for these families to get the support they deserve!!
It is imperative that these children receive the standard of care that they deserve, for the medical illness for which they have been diagnosed.
I taught a child with PANS/PANDAS.
I support HB1641. PANDAS and PANS is a devastating condition for a family to fight with, the last thing these families need is to fight with insurance about coverage for a potentially life saving treatment. Surely a life is worth five cents per member per month.
My family has been battling PANS/PANDAS since 2017 when our daughter was DX after my husband almost died from septic shock when strep went to his blood. My entire family has had tonsillectomies, long term antibiotics, supplements, steroids, and therapy. However our 16 year old daughter is barley functioning at this point, and we are worried sick about her being able to be independent and turning 18. We have been denied the IVIG necessary treatment twice by BCBS. This awful condition has left our family physically, mentally, and financially devasted as we struggle trying to manage 3 sick kids, insurance denials, medical bills, school issues, IEP's. mental health issues and just simply getting by day to day. These kids have lost their childhood. As a mother it is almost unbearable knowing my kids will only remember sickness and trauma growing up. Our entire family has PTSD form the effects of PANS/PANDAS and the awful behavioral and OCD symptoms it causes. I am begging you as a mother, caregiver, and constituent for the Virginia state legislature to pass this bill. You or someone you love's life and welfare might depend on it some day.
Please vote yes for HB1641. Important medical care is needed.
I am writing to urge our legislators to support this critical bill, which has the potential to transform the lives of young people struggling with devastating disorders. As a parent of two children who have been deeply affected by these conditions, I understand firsthand the profound toll this disease takes on families. For years, we have paid out-of-pocket for the majority of their treatment, a financial burden that has often delayed necessary care. This experience has been nothing short of overwhelming, both emotionally and financially. However, my family is not alone in this struggle. Many Virginians are facing similar challenges and will need the same kind of support to ensure their children receive the treatment they deserve. This bill is an opportunity to break the cycle of hardship and give families like mine the relief and access to care that should be a basic human right. Healthcare is not a privilege—it's a fundamental necessity, especially for our most vulnerable population, our children. Let’s work together to ensure that all young people in Virginia have the opportunity to heal, thrive, and reach their full potential. We owe it to them and to future generations to make this vital change.
My name is Daniela Sosa-Sarkar, and I am here today as a Virginia resident, a Virginia licensed clinical psychologist, the co-founder of the Virginia Alliance for PANS/PANDAS, the President of The Alex Manfull Fund, and, most importantly, the parent of two young people who have been diagnosed with PANS/PANDAS. I urge you to vote YES on HB1641. This bill is critical for ensuring that children suffering from PANS/PANDAS can access the care they urgently need without the barriers of insurance denials. Many of you know a little about my story. Thanks to our ability to secure appropriate treatment, he is gradually reclaiming the life every 13-year-old deserves. But our fight is far from over. Years of undiagnosed illness and inadequate care have taken their toll, and the road to full recovery is still long. Unfortunately, many Virginia families don’t have this same outcome. They are left struggling to pay for medically necessary treatments out of pocket, leading to financial devastation and, worse, a delay in care that can result in lifelong disability—or even death. This is not an exaggeration for dramatic effect. The tragic proof lies today at the PANDAS PANS Brain Bank at Georgetown Medical Center, where the brain of Alex Manfull, and many other children and young adults whose lives were lost due to PANDAS/PANS, is housed to further research and prevent future losses. The Health Insurance Reform Commission (HIRC) unanimously recognized the critical need for this legislation in December 2024, sending HB1641 to the General Assembly. And let’s be clear: the Virginia Board of Insurance estimates the cost of coverage at less than $0.0046 per member per month. That’s a fraction of a penny. Compare that to the tremendous human and financial cost of untreated or delayed care. I stand here today for my children and for all the Virginia families who deserve the best our healthcare system has to offer—not a lifetime of preventable pain and suffering. Please vote YES on HB1641. These young lives are worth far more than half a penny. Thank you.
Please vote yes on HB1641. I am a neuro-pathologist at the POND Brain Bank at Georgetown and an Associate Professor. I know the reality of this illness, the importance of families accessing prompt adequate and affordable care and the consequences if adequate treatment is not delivered. Regretfully the brain bank is a vivid reality of this illness. VOTE yes. Young people deserve it!
My son, now 20, has been suffering from PANS/PANDAS since 2020. Unfortunately, because of insurance denials, he wasn't able to get necessary treatment for over two years. I'm not exaggerating in the slightest when I tell you that this disorder stole my son, and has stolen the last 4 years of his life. Early intervention treatment may very well have prevented that. Please support HB1641 so that Virginians can get the treatment that they need and deserve, and to spare them and their families from the devastating consequences of untreated PANS/PANDAS.
Medical care and assistance for children with PANS/PANDAS and their families is extremely important and necessary. A healthcare plan which allows treatment without a multitude of obstacles will allow families like mine to be able to thrive as individuals and members of society.
My 13 year old daughter had sudden onset PANS in February of 2022. Before being diagnosed, however, she spent months not eating, six weeks not talking, weeks in and out of acute care psychiatric facilities, many trips in the back of police cars to treatment facilities and the Community Services Board, six months in a residential psychiatric facility, and then it was only a psychiatrist that recognized that she had PANS that sent her to a doctor who was familiar and started treatment. None of the testing or treatment that she receives is covered by insurance aside from three medications. Even her psychiatric visits are uncovered due to us having to go out of network to find a treating psychiatrist. While our daughter is slowly working through the healing process, she is back in school and receives supports from the county as well as the school system. But we need your help to continue with the heath and medical costs so that my daughter and others will have the coverage that they need for treatment of this horrible illness. If PANDAS/PANS diagnosis and treatments were covered under our health insurance, not only would it ease the financial burden on us, but it would also cost less than half a penny per member per month overall. Please support our family and vote YES today on HB1641. Suzie Phipps Herndon, Virginia 8th District
As an elementary educator and community supporter, I have personally seen the impact of PANS/PANDAS on those affected. This condition should be covered and the families of these children should have more access to support, financial and otherwise. I request urgent support for HB1641 and thank you for raising this important issue to the forefront. - Virginian families and educators
Please support HB1641. As a parent of a child with an Infection-Associated Neuroimmune Psychiatric Disorder (i.e. PANS/PANDAS) I am seeking your support to provide Medicaid and private insurance coverage for the diagnosis and treatment of PANS./PANDAS.
I personally know a family struggling with a new diagnosis PANS and would benefit from more support.
I fully support HB1641 and I stand by families, children, and young adults affected by PANS/PANDAS.
I strongly support HB1641. This is greatly impacting lives and we can help. I support families, children, and young adults affected by PANS/PANDAS.
I support HB1641 and I support families, children, and young adults affected by PAN/PANDAS
I fully support this bill. Families with this need all the support they can get. Kids should not be denied help.
I support HB1641 and I support families, children, and young adults affected by PANS/PANDAS. IVIG can be a lifesaver. Please pass!
I know a child with PANS or PANDAS. I have worked with people who struggle with this condition in therapy as a licensed clinical social worker too.
When I started experiencing disabling tics in 2005, nobody knew about PANDAS. As such, it was a fifteen year journey just to get a diagnosis. Much has changed since then with regard to diagnosing and treating this disease, however one thing that remains unchanged is the insurance company's routine denial of coverage for treatment. My parents paid exorbitant out-of-pocket costs to help me get treatment, which is simply not possible for all families. Mandating coverage for PANDAS is a step in the right direction that may ultimately force health providers to consider the implications of this illness in terms of preventative care.
I am mom to three sons diagnosed with PANDAS/PANS in 2012. We sought specialists across four states for treatment. The boys endured intense treatments/therapies targeted to their individual symptoms for three years. Treatments. included long-term high dose antibiotics, probiotics, supplements, speech and occupational therapy, homeopathy, dietary changes, anti-inflammatories, and HD IVIGs for two of the boys. As a stay at home mom, I dedicated my days to being their full time medical advocate and navigating insurance challenges. No parent should have to do that. Efforts were successful though. After three years if treatment, our kids were back to baseline in 2015 and have been in remission/recovered . The oldest, our most severely impacted child, is now working on his PhD in econ at age 22. Our middle son was first in his high school class in 2023 and is now a Rodman scholar, TA, and RA as a second year at UVA. Our youngest is a year round athlete, a senior with a 4.5 GOA, and awaiting college application decisions. The treatments I fought for and obtained gave them their childhoods and lives back. Every child affected by PANDAS/PANS should have appropriate treatment!!!
I have personally seen the impact of PANS/PANDAS on those affected and their families and request urgent support for HB1641.
I wholeheartedly support this Bill and the necessity to support families and children who have been diagnosed with PANDAS. I've seen the devastating effects this disease has had on the child as well as the family.
I support HB1641 and I support families, children, and young adults affected by PANS/PANDAS
Our daughter was stricken with the awful auto-immune condition PANDAS some years ago. It has been terribly debilitating for her and an exhausting and ruinously expensive journey for our family. Our doctor told us that an Intravenous Immunoglobulin (IVIG) treatment was essential to reset her immune system and prevent a descent into ever more desperate mental illness. She responded immediately to the treatment and has subsequently made enormous progress. Her mental health is excellent and she is attending school and achieving really high marks. She is doing a host of activities: rowing, church choir, Taekwando, volunteer work, that she had been unable to take part in at all when stricken. Our Insurance categorically refused to pay the $15,000 for this treatment, while telling us that if we lived a short distance away in Maryland they would have covered this essential and life-changing treatment. Over the last years, we have spent all our savings and borrowed money to pay for the health, support and educational services needed to sustain our younger daughter, often at the expense of opportunities for her older sister. She is doing terrifically well now but we never know when exposure to an infection might necessitate another IVIG treatment. Please recognize this terrible affliction and the vital role that IVIG can play in recovery so that Insurers are not able to deny coverage, condemning Virginia families to a mix of debt, poverty and missed life chances for sufferers.
Our 7-year-old son has PANDAS/PANS. In February 2023, he was a completely healthy kindergartener. He then had a sudden onset of PANDAS/PANS, which was triggered by a common childhood strep throat infection. We have worked ever since to find treatment for him to try to help him get better. It is hard to put into words the stresses that his illness has placed on our family, both emotionally and financially. We very quickly had to assemble a team of doctors to treat his condition. And we have had to travel out of state for treatment that isn't covered by our insurance. House Bill 1641 is aimed at helping families like ours get health insurance coverage for treatment here in Virginia.
I support HB1641 and families, children and young adults that are affected by Pans/Pandas.
please help these families that are dealing with this NEUROPSYCHIATRIC SYNDROME,THEY COULD REALLY USE SOME HELP..
I have personally seen the impact of PANS/PANDAS on those affected and their families. I urge for support with HB1641.
I have personally seen the impact of PANS/PANDAS on those affected and their families. I request urgent support for HB1641.
Please pass this bill to provide life altering and life saving medical treatment to children with pans/pandas. I've seen the devastation this disease causes when it's not treated due to insurance denying coverage.
I ask that you support this bill. I am a father to a young child with PANDAS. We battled our insurance company for months while simultaneously paying out of pocket for IVIG to ensure our son got the treatment he needed. I cannot imagine where we would be if we had not had the knowledge and resources to fight for this treatment.
December 8th 2017. I remember that day well, we moved into our dream house with our 7 year old boy. He was running a high fever and laid on the floor in his sleeping bag while the movers whizzed past him with all our boxes. My wife had taken him to the doctors earlier that day for yet another sinus infection. It was snowing that day and at all seemed too perfect. Our first two weeks in our new house was magical. Like we were staying in someone’s AirBnB and dreading when we had to pack up and leave. Our son had his 3rd floor play room and he lived there. Then our dream became a nightmare. Like someone stole our kid in the middle of the night our bright, funny, sweet boy changed into an anxiety riddled “feral” child. He started attacking us, would hide under tables and chairs during appointments, developed severe separation anxiety, stopped sleeping at night. Fast forward to today, we’ve maxed out credit cards and emptied out our savings and retirement to help get our kid better. I’ve sat and watched my son put holes in our walls during a rage because he didn’t understand why the insurance company wouldn’t approve an infusion he had been on for years and was working. The countless delays we’ve had in our care just due to the issues with getting insurance to pay for it alone has done irreparable damage to our son and us. Unfortunately due to all these delays that were totally out of our control, our son has progressed from PANS to full on Autoimmune Encephalitis with limbic seizures. Right now we’re praying that he can have a somewhat normal life when he gets older. The really sad thing is that we probably wouldn’t be this bad had we not had to fight for months to get treatments approved by Cigna while our son sat there and got worse. Please! No parent should have to go through what we did. The helpless feeling of watching your son suffer so that some executive that makes 20 million a year can get his 5 million dollar bonus.
As the mother of a teenaged PANDAS daughter who for the last eleven years has been fighting UNSUCCESSFULLY with insurance companies to get my daughter IVIG treatment to aid in her fight against PANDAS, I am adamant about the importance of this much-too-expensive treatment being accessible to all children with PANS/PANDAS. These children deserve every opportunity to feel healthy and in control, normal and able to focus at school, and there are easy to access articles (https://pandasnetwork.org/research/archive/latest-research/intravenous-immunoglobulin-treatment/ ) proving the efficacy of IVIG on kids with autoimmune encephalitis. How is this even up for debate? These are our children! Step up and make this treatment available and covered by all insurance!
I support HB1641- and I support families, children and young patients affected by PANS/ PANDAS.
“I support HB1641 and I support families, children, and young adults affected by PANS/PANDAS.”
My son and many others in our area have Panda/Pans. Tick-borne illnesses often cause or contribute to onset, and we have many ticks in this area of Virginia. Please help families affected by these terrible illnesses by updating insurance to provide coverage.
Please help us. Both of my children have PANS. It is such a debilitating illness, not just for the child affected, but for the whole family. One of my children is no longer able to attend school and is homeschooled due to this disease. Coverage for care is pennies per member per month. Please vote YES for HB1641. We had to leave the state to get treatment and we pay 100% out of pocket. Our savings are gone and we are racking up debt, yet we are one of the lucky ones that have barely been able to make ends meet to do all of this. I can’t stand to think of kids who don’t get life-altering treatment because their parents can’t afford it. Please do whatever you can to help us and so many other kids in Virginia. Insurance coverage could tremendously help with the far-reaching and devastating impacts of PANS/PANDAS on families.
I support HB1641 and I support families, children, and young adults affected by PAN/PANDAS.
I support HB1641 and I support families, children, and young adults affected by PANS/PANDAS.
I support HB1641 and families, children and young adults that are affected by Pans/Pandas.
HB1641- I’ve witnessed the devastation that PANS/PANDAS has on children in both my personal and professional life. Personally I’ve seen a friend’s daughter struggle with her daily life to the point that at times her mother stays up all hours of the night to ensure that her daughter is safe due to the extreme behavioral and self-harm concerns they face as a direct result of this illness. I am a children’s therapist who has seen such intense safety concerns for so many children’s behavioral harm due to mental health conditions over the past 15 years that I do not use these terms lightly. These children deserve to have access to insurance coverage of treatment for these autoimmune disorders which cause intense and dangerous psychological and neurological changes to their behaviors. Please vote YES for insurance coverage requirements for treatments of these disorders. HB1670- As a Virginian prescribed an epinephrine injector due to a history of severe allergic reactions, I fully support a cap on the price of these lifesaving medications. I know so many people that don’t keep their prescription up to date because the costs are so high. Please vote YES for setting a price cap on epinephrine injectors.
I have seen this personally affect friends/coworkers. I hope you will ensure their children can have insured access to the care they need.
Hello. Thank you for considering this bill. My family has personally been adversely affected by PANS / PANDAS, and it has cost us so much emotionally, mentally, physically, and financially. My daughter was diagnosed with PANDAS at the beginning of 2021 after a "routine" strep throat infection. If PANS/PANDAS is not treated right away and there is delayed care due to lack of insurance coverage or denied insurance coverage, then children can and do suffer due to the untreated (or undertreated) inflammation in their brains. Care delay can lead to worse outcomes for children with PANDAS. Fortunately, Virginia has a way to support its children and their health - to ensure that these kids have a chance to go back to school, to participate in extracurricular activities, to spend time with friends, to volunteer, and to not be left behind as their peers go through school and graduate. HB1641 gives Virginia families the financial support they need to ensure any child diagnosed with PANS/PANDAS can access health care. Not only that, but the Virginia Board of Insurance has estimated that the cost of this coverage would be less than half a cent per month. With such little cost for such great returns, it should be an easy choice to support HB1641. Please support us and help our young people overcome these devastating disorders.
“I support HB1641 and I support families, children, and young adults affected by PAN/PANDAS.”
Please for YES for HB1641. My son has Autism and the autoimmune disorder PANDAS. Emerging evidence suggests that individuals with autism spectrum disorder (ASD) may have a heightened susceptibility to immune dysregulation, making them more vulnerable to developing PANDAS/PANS. Autistic individuals often face co-occurring conditions, and the onset of PANDAS/PANS is often associated with their ASD diagnosis which delays any eventual PANDAS diagnosis. By then the symptoms are exacerbated and more severe. This makes access to treatment and diagnosis even more critical. We saw with insurance coverage for Autism treatment and therapy initially passed in Virginia in 2011 and then eventually expanded, that once insurance began paying for these modalities for autism, then providers came into the marketplace. Please vote yes on HB1641 and ensure families are able to access care for their child suffering from PANDAS/PANS
My child has been personally affected by this chronic illness, its been almost eight years of so many medical treatments that we have paid for out of pocket with little insurance help. Families need this coverage, to atleast try and get rheir kids back to a somewhat normal life if possible.
“I support HB1641 and I support families, children, and young adults affected by PAN/PANDAS.”
I support HB1641 and families, children, and young adults affected by PAN/PANDAS. The lack of coverage is devastating to families dealing with a terrifying medical situation. Families shouldn't be forced to face financial ruin while seeking the care their children require.
I support HB1641 and I support families, children, and young adults affected by PAN/PANDAS
Please help
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 HB1641 requiring insurance coverage, treatment will remain out of reach for me and many others. That's why I'm asking you to pass HB1641. Please don't let us suffer any longer.
My nephew has suffered terrible medical and emotional impacts from PAN/PANDAS. This has impacted everyone living in the household, not just the child. I support HB1640 and I support families, children, and young adults affected by PAN/PANDAS.
I have seen someone struggle because of it
This bill is vital to families
My family has been devastated by the insurance company's lack of coverage for pediatric acute-onset neuropsychiatric syndrome both financially and emotionally. After their daughter's week long hospital stay only to be discharged without any answers, they have scoured every nook and cranny for help. The one treatment with any hope of helping her is not covered by insurance and it has forced them into extreme medical debt. Please pass HB1641 to help my young niece and the many others suffering from this debilitating autoimmune disease.
My 7 year old sweet daughter suffers from debilitating PANDAS symptoms. Coverage for care is pennies per member per month. Please provide support today and vote YES for HB1641.
I'm writing this in support of HB1641. Pans and Pandas has significantly impacted my accessibility to my grandchildren. What was once unlimited has become severely restricted. On the occasion we do get to spend time with them they don't want us to leave. Time with them is second only to their health and well being.
I am writing to promote support for the bill based on my personal observations of a church friend whose family has been significantly impacted. She is a single mother of two adopted daughters and is a public school teacher. Assistance is critical for her.
I support HB-1641. Children and young adults with PANS/PANDAS deserve access to advanced treatment—withholding treatment can ignite an unfathomable cascade of unrelenting, relapse-remitting disease progression that can interrupt and in some cases end a child’s life. No child deserves to live an inhumane existence when medical treatment is readily available, yet seemingly inaccessible. Our family has experienced the cost of withholding treatment for a child diagnosed with PANS/PANDAS (irreparable brain damage)—I urge you to vote YES for HB-1641 to prevent other families from our unfortunate road.
I’ve seen what an autoimmune disease has done to a family and how much it has impacted lives . Not only do they have to go through medical treatment that isn’t always available but financially may not be able to undergo treatment and suffer .
Having witnessed the journey of a close friend whose daughter was diagnosed with PANS/PANDAS—and who also serves as the director of EMS training at a local community college—I sincerely hope the Commonwealth will recognize these complex disorders and allocate funding for improved diagnosis and treatment options. For families dealing with PANS/PANDAS, accessing care in Virginia is particularly challenging. The lack of a definitive treatment plan, combined with limited specialists and high out-of-pocket costs, creates significant financial and emotional burdens, even for those with insurance.
Have a neighbor facing potential financial debt in an attempt to help their son with this autoimmune disorder. Please do your best to get this bill passed. It’s staggering what families like them must endure in order to help their children thrive.
I support this bill! Insurance should cover treatment.
My family has been personally affected by PANS, because my 16 year old daughter went from being a competitive cheerleader and doing Algebra to bedridden and not able to add numbers. We exhausted many other treatments before attempting IVIg. Our insurance company denied IVIg, so we took out a home equity loan to pay for treatments. She is about 85% better, and the insurance company still is denying the claim. I believe this bill would help families dealing with a lot and would relieve part of the financial burden
I support hb1641, please vote yes.
I am a Registered Nurse in Virginia who administers IVIG to several patients diagnosed with these disorders. I have seen how much these treatments can help and support all efforts to expand access for the coverage and affordability of these treatments and other treatments for PANS/PANDAS. I support HB1641. Please vote yes!
I am a physical therapist writing to encourage the immediate passing of HB1641. I have witnessed the devastation young people experience when they develop PANS/PANDAS, a neuropsychiatric disorder following an acute infection. The pain, exhaustion, nausea, difficulty concentrating, muscular weakness and full body dysregulation need the expertise of a team of specialists. The financial burden is more than many families can handle, and they will sacrifice everything for the chance that their child will recover. Many families simply cannot afford the treatment. With treatment these young people do get better. They can become the people they were put on this earth to be. This is morally the right thing to do. From a purely financial perspective, these young people will become tax payers, people who "pay it forward" . Voting yes to HB1641 will allow these young people to get the treatment they need. Families who cannot afford the treatments will have access to the best of care, and their children will have the best chance of recovery
Our family has been living the “nightmare” that PANS/PANDAS is for over six 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 and sadly our youngest (age 5) this past year as well. 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 was taking care of two chronically sick children and managing their care for over five years. I would love to get back to teaching full time and “helping” shape our future generations, but until VA steps up and gives our children the fully covered doctors and treatments they need, that will never happen. Our children are running out of time, they deserve so much better. In the words of my 9 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?” Last April during her last cheer competition , our daughter had her worst flare to date. You see these children often become stuck chronically in this condition when they are denied prompt treatment. Please see the BEFORE monthly IVIG pictures attached and then the most recent ones after 6 months of monthly IVIG, steroids, and prophylactic antibiotics.
I support the signing of this bill. My neighbor has a young son suffering from this autoimmune disease that her health insurance will not cover
This medical condition is tragic when a person get it It is even more tragic when the parents insurance company refuses to pay for the treatments needed for the person to recover. Please help with helping push insurance companies to pay for treatments. Lynn Autry
I know a child affected and this would really help the family
I know a child affected and this would really help the family
My name is Megan Longo. I ask that you support HB1641. At the age of 5 my son was stricken with this devastating disorder. Our world was turned upside down. My son was unable to attend school and I had to take a leave of absence from my job to care for him. Due to the severity of his symptoms, his doctor, a pediatric neurologist at Children's Hospital of Richmond, prescribed IVIG. We went through the appropriate process with our health insurance plan but received denial after denial. Our son was deteriorating before our eyes and we made the decision to pay out of pocket. Over 3 months, we spent approximately $16,000 on IVIG. After 4 months of fighting United Healthcare, our denial was overturned at the external level and my son was finally approved for the treatment he needed. Despite waiting 4 grueling months and paying thousands out of pocket, we are some of the lucky ones. Many have waited years or never received approval at all. Most cannot afford to pay out of pocket and their children suffer while waiting. I ask that you support this bill to protect all of our children in Virginia.
I’ve seen the incredible difficulty and pain that PANDA/PANS has caused in the daughter of a dear friend of mine. The fact that treatment isn’t covered by insurance is outrageous. Please pass this bill ASAP so she and the many other families in VA who suffer from this disease get the support and treatment they need.
This is life changing! Please vote YES!!!!
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As someone who has a business in Fauquier County, I urge you to pas HD 1641. Hard working people should not be left to face devastating consequences when a child is ill.
I wholeheartedly support this bill! Every patient and caregiver needs this bill passed as soon as possible!!! PLEASE vote YES!!! Thank You!!
Our family has been turned upside down due to this horrific disorder. Hours of energy fighting insurance for coverage, after hours of trying to help our sick child, is unacceptable. This bill is needed and we need help getting our children healed.
Insurance companies need to provide coverage for children’s coverage that are diagnosed with PANS/Pandas. It’s crucial these children have coverage and treatment, and that doctors have the incentive to learn more about this serious and life altering auto-immune brain disorder. Thank you for your time, interest and concern. Please vote to have insurance pay for treatments.
Watching a young vibrant girl lose some of the best years of her life suffer while her family has and is stilling doing all the can financially to have to resource to help their child as been heartbreaking to watch. Treatment should not be a luxury and should not be at the expense of families having to choose loosing their home over caring for their child.
I have two 15 year old girls who have been affected by this horrible disease since second grade. Please pass this bill so that we can afford to treat our children. There is no coverage by insurance for diagnosis or treatment. My husband and I have exhausted our savings trying to help our children. I have had to stop working twice to stay home and take care of my kids. There are treatments for this complex disease. Please require that insurance cover them so that any of these children don't have to suffer and lose their childhood to this disease.
I am writing to comment on HB1641. My daughter has PANS and PANDAS. Two years ago she had a severe flare that caused her to have several acute psychiatric stays and stays that lasted several days in the local ER. We also had to call law enforcement several times. Due to the severity of the flare and her no longer responding to NSAIDS or steroids her doctor recommended IVIG. IVIG would only have been a 1-2 day treatment. Insurance denied this treatment. As I tried to work on appeals there were several more incidents involving police, search and rescue, and ER stays and acute psychiatric stays. Eventually, I gave up and we ended up doing plasmapheresis. To be able to do plasmapheresis we had to have her on heavy medication consisting of antipsychotics to keep her calm for the 2 WEEK treatment. By this point, she was only allowed back in school for half days due to the severity of her behaviors. From the beginning of the flare to her receiving plasmapheresis was 9 months. If insurance had covered IVIG we would not have cost the community so much. I am a single mom of two children and I was constantly out of work trying to get her help while also trying to care for my other child. I cannot even give you an estimate of how many people were involved in trying to keep her safe during those 9 months.
My family has been personally affected by this disease, my nephew who is 8 years old started suffering from this disease several years ago. It is astonishing the hoops my sister has had to go through to find doctors knowledgeable enough to treat this disease, and the financial struggles they have had because insurance doesn’t cover the treatments, but he is living proof that they work. I hope this gets passed and more kids can get the help they need.
Please vote yes to HB1641. Our neighbor's child is affected by PANS/PANDAs. I have seen first hand the affect on his behavior. It not only affects the child but the whole family . Passing this bill will allow this child to get the medical help and insurance coverage to lead a normal life.
Our lives were turned upside down in June 2023 when our daughter was diagnosed with PANS. She continued to decline in health which lead to a lengthy hospital stay to where we were told that she could not receive the treatment she needed under the PANS diagnosis due to insurance constraints. Our vibrant 16 year old cheerleader was debilitated. At times, she could not walk or talk. In November of 2024, we were able to obtain IVIG and immunotherapies in an out of network provider and had to go into a considerable amount of debt to pay for this treatment. Now in January of 2025 after receiving this treatment, she has been able to tumble and will return to cheerleading and school as her brain continues to heal. Please pass this life saving bill to help children and families like ours.
My family has been greatly effected by PANS/PANDAS, from 2019 till mid way through 2024 my children have missed every Christmas, 4th of July, Easter and most other holidays where family and friends gather due to the risk and effects that PANS has had on there lives. Its only since treatment that our family has been about to enjoy these simple but important events and holidays. I support HB1641
I know a family affected by an autoimmune disease. In a time if uncertainty and stress, having to fight insurance and offices about billing adds additional complications. Imagine a world where you can focus on your childs health and not whether paying for medical treatment means not eating.
I am a PANDAS/PANS Advisory Council Member, Co Founder of the Virginia Alliance for PANS/PANDAS Action and most importantly, mother to 4 children with PANS. Our PANS/PANDAS medical journey began in February 2016, with my two youngest at the time from a common infection of strep throat , which was treated early and with a 10 day course of antibiotics. Despite early treatment of strep throat, after the course was complete my kids became unrecognizable from new symptoms of severe OCD, anxiety, depression and more...Our pediatrician said it looked like PANDAS but had no idea how to treat it and didn't know any doctors treating the Infection Associated Neuroimmune Disorder. PANDAS soon turned to PANS without treatment and with every illness causing symptoms to become more debilitating. In 2017 my oldest had an onset of PANS after several back to back infections that winter. It took 16 doctors across different specialties and 4 misdiagnoses before we would find a treating neurologist in 2019. Just after finding a treating neurologist, my youngest child had onset of PANS from an unknown virus. All 4 of our children now had the disorder that would steal away years of their childhood that they will never get back. With a very thorough workup, their treating neurologist prescribed the treatment they needed, IVIg. However, this medically necessary treatment was denied by insurance in January 2020. Symptoms became worse. They became chronic without the treatment they medically needed. As their symptoms became more severe, I was no longer able to run a business I owned, which I had to shut down to be able to meet the medical needs of my family. It was not until December of 2022 that one of our children finally got insurance approval for the treatment of IVIg which had life saving results for her. The following year of 2023, all 4 of our children received the same life changing treatment with insurance approval that had been denied in January of 2020. In the fall of 2024, our children were able to join a homeschool co-op with enrichment classes, go back to church and youth group and join in peer activities for the first time, thanks to IVIg. Their prescribed treatment that took much too long to receive ( 3 and 4 years after treatment with CBT, antibiotics and steroids) and delay meant they lost years of their childhood to a disorder that could have been treated years earlier when it was first prescribed but denied. My family and children suffered significantly, losing years of their childhood due to delayed care of medically necessary treatments that were denied by insurance. But lives can be regained with early diagnosis and access to medically necessary treatments... The Virginia Board of Insurance estimates the cost of coverage would be just $0.0046 cents, per member per month. Less than half of a penny can save a child or young adult. The proper treatments can give a child and their family their lives back and I speak to that first hand. Please approve HB1641. Save children and young adults , along with their families!
I support HB1641
Petition to the 2025 Virginia General Assembly: VOTE YES ON HB1641–HELP VIRGINIA’S YOUNG PEOPLE GET URGENTLY NEEDED TREATMENT FOR THE DEVASTATING DISORDERS OF PANS/PANDAS........We the undersigned are united in our urgent call for the 2025 Virginia General Assembly to support passage of House Bill 1641. See the petition and the 200+ signatories and counting here: https://drive.google.com/file/d/1djZvOlmAIJaOl-TGtynFAckmcm-QM3fp/view?usp=sharing
I support this bill wholeheartedly! No child should have to suffer while their parents go broke trying to save them.
My great niece has Pans, this disease is financially devastating. This is a very serious disease and The strain on the family to heal this child is an unbelievable journey. Please pass HB1641
I learned of this awful disease last year when my friend’s daughter started presenting neurological distress. A young healthy child unable to understand the emotional, cognitive, and physical demise she was awoken to one day. She and the family have had to struggle not only for medical help but financial as well. PANS/PANDAS diagnosed children are more and more common as I began to see more families with the same struggles. These children need help, not just in our state but throughout our country. Bring awareness!
My little sister has PANS. Passing this bill would aid in coverage for her and the many kids like her. Not having coverage has greatly impacted my family. Putting them in significant debt in order to provide her with life saving treatment. Not having the bill in place significantly delayed treatment for my sister. Since she has recieved treatment she is almost well enough to return to school and her passion of cheerleading. At a mere half a cent increase. That is worth saving lives.
My granddaughter has Pans, this disease is financially devastating. The strain on the family to heal this child is a unbelievable journey. Please pass HB1641
I’m writing with an urgent request for you to vote YES on HB1641. I am a resident of Virginia, co-founder of the Virginia Alliance for PANS/PANDAS Action, Vice President of The Alex Manfull Fund, and mother to a young person with PANS. There is little in life that prepares you for an illness as terrifying and debilitating as PANS/PANDAS. The utter shock of losing your beautiful child to an insurance system that puts profits ahead of health, even when kids’ lives are at stake, basically defies belief. Until it happens to you. And if you or someone in your family has ever had a cold or strep throat, this could happen to you. PANS and PANDAS typically hit kids and young adults following infections such as the flu and strep throat. 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. I know very well because I watched this happen to my daughter. Our relief on finally having a diagnosis and treatment plan was short-lived when we realized we had to fight our “good” insurance company for everything from antibiotics to immune therapies prescribed and necessary to treat her severe condition. 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 even sought treatment abroad that we were unable to secure in the US. That treatment worked, but my fight is not over. My insurer has continued to deny reimbursement for the costs of this life-changing treatment. 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. During the recent HIRC review, the VA Board of Insurance estimated the cost of coverage for the diagnosis and treatment of PANS/PANDAS at just $0.0046 per member per month—that’s less than half a cent. It’s hard to fathom that insurers would deny treatment to children and young adults when the costs are so negligible and the damage to them, their families and society so astounding. I urge you to pass this law to help our young people get the treatment and live the lives they deserve. Please VOTE YES on HB1641. Thank you.
Our family has been impacted by PANDAS for the last 2 years. This disease does not effect just my 11 year old son. It effects my whole family. We are only two years in, and still learning how to handle it. Getting an early diagnosis and treatment is very important. Due to insurance not paying for testing and treatment, we have depleted our savings. We have had doctors refuse treatment due to being uneducated in PANDAS/PANS. Children should not have to suffer due to lack of treatment. This disease has destroyed his immune system, causing several days of missed school. This has caused grades to drop. With proper treatment, all this could change. The stress it puts our family under every day. We have to be careful where we go, who he is around, and if someone around him had been sick. Could you imagine living every day worried if the next illness is going to take the child you raised and cause permanent damage? I didn't either until my son got sick. Now it is the everyday norm for our family. What fight will I have when I take him to the Dr. or with the insurance? Will they be able to treat him. Will I be able to pay for his treatment. No one should have to make this decision. These kids and young adults did not ask for this. They want to live a normal life. That is possible with proper treatment. Please help the families who live with PANDAS/PANS. Help us get them the treatment they deserve.
My family and I care deeply for a family and their daughter who have been affected by PANS/PANDAS and who have suffered immensely due to insurance denials of coverage for treatment. The medical, social and financial costs are simply staggering, despite the fact that doctors are prescribing the treatment. Please, please swiftly approve HB1641 to provide the relief so desperately needed and deserved by Virginia's young people and their families
Please pass this so we can start saving our children. Both of my boys have suffered long enough. I’m suffering. We’ve seen that IVIG works and saves lives. I’ve watch it happen to my youngest son. I’m waiting to receive IVIG as well. I’m exhausted but will not stop fighting for our lives. Thank you.
I know a person and family who have been affected by PANS/PANDAS and who have suffered immensely due to insurance denials of coverage for treatment. The medical, social and financial costs are simply staggering, despite the fact that doctors are prescribing the treatment. Please approve HB1641 to provide the relief so desperately needed and deserved by Virginia's young people and their families.
Please support this bill! Our lives have been forever scarred by our child’s autoimmune disorder. Overnight, our child changed from a regular kid to having severe anxiety, tics and debilitating OCD because he got a strep infection. The resulting brain inflammation has been an absolute nightmare that robbed him of his childhood and the entire family of any semblance of normalcy and functioning in society. We’ve spent countless hours, thousands of dollars, and energy we didn’t have fighting this disease. This included fighting health insurance companies to cover treatment deemed vital by our pediatric neurologist, a specialist in pediatric autoimmune diseases. Insurance denied coverage. Meanwhile, we watched our son losing himself to brain inflammation. He’s so tired of fighting the unrelenting obsessive thoughts and anxiety in his brain and wants to die because the suffering is so unbearable. If you witnessed your child go through what mine has, you would not hesitate to do everything in your power to ensure that another child/family never has to go through this again. Please do not deny another child a chance at living life and hope for the future. Please support this bill.
Hello, I am writing on behalf of a young woman in my family whose life has been completely upended by PANS. Before her infection, she was a star athlete and on track for Ivy League schools, receiving interest from a number of highly selective institutions. Her parents have spent a significant amount of time and money pursuing care that is often not covered by insurance, this care based in scientific research and recommended by experts on this issue. As a mental health professional, I am also writing on behalf of all of the young people whose mental health has been severely impacted by PANS/PANDAS. As a society, we can and must do better by them. Sincerely, Megan Thurkins, LPC Arlington, VA
I would like you to please vote yes on HB1641. It took over 7 years for me to be adequately diagnosed. So much pain and unnecessary drugs could have been avoided if my doctors knew about PANS/PANDAS and I was adequately treated. Please vote YES! Other young people should not go through what i went through.
Having known someone whose child tried to commit suicide as a direct result of this horrible syndrome, I fully support HB1641 and urge my Representative to do the same. Thank you.
Please vote YES on HB1641. I’m a 53-year old husband, father, business owner, and 27 year resident of Virginia. My family’s life was turned upside down in February 2021 after an infection triggered PANS in our 16 year old daughter. She went from being a straight-A student and strong athlete to bed-bound, unable to read or shower without assistance. Can you imagine how helpless my wife and I felt when we visited 14 different doctors to diagnose her and develop a treatment plan? Despite having insurance, we faced ferocious battles for coverage of essential treatments, forcing us into debt and even seeking care abroad. Early diagnosis and treatment are crucial for recovery. Without it, PANS/PANDAS can cause lifelong disability or even death. I encourage you to support this common-sense legislation to give our young people the care they deserve. How much are the brains of our young people worth? Thank you for your consideration. SD
I have personally witnessed the effects of Pandas disease on a child and their family that is very close to me. I do believe this issue needs to be recognized and further researched to help those affected.
Hello, I know a young woman who has been affected by this condition now for over four years. It has disrupted her life while she is supposed to be in her prime. While all her friends were transitioning from high school to college, she was dealing with an onset of crippling, chronic illness and very few answers or solutions. We need research and support to tackle this problem so that illnesses like these don’t ruin lives or create pipeline of youth destined for disability welfare and a broken health system. Thanks for your attention, Daniela Izzie
I am in favor of passage this bill.
I am writing to you today as a Virginia resident, a Virginia licensed clinical psychologist, the co-founder of the Virginia Alliance for PANS/PANS, the President of The Alex Manfull Fund and the parent of two young people with Infection-Associated Neuroimmune Psychiatric Disorder (PANS/PANDAS). I urge you to please vote yes on HB1641. My family, as many others, has been personally affected by this little-known but devastating disorder, compounded by insurance denials of coverage for prescribed standard-of-care treatments. Thanks to our ability to access care, our son has been able to return to school, after two years of being completely homebound. Other Virginia families have not been so lucky. The Health Insurance Reform Commission (HIRC) understood the critical need to get our young people urgent treatment to avoid lifelong disability and even death when they fast-tracked our bill and voted unanimously in December 2024 to send our legislation to the General Assembly. The Virginia Board of Insurance estimated the cost of insurance coverage to be less than $0.0046 cents per member per month–a negligible cost far outweighed by the risks of denying and delaying treatment. Virginians diagnosed with PANS/PANDAS and their parents deserve the best that our healthcare system has to offer—not a lifetime of pain, disability, debt, and symptom management. VOTE YES ON HB1461, THEIR LIVES ARE WORTH MUCH MORE THAN HALF A PENNY!
I know a person and family who have been affected by PANS/PANDAS and who have suffered immensely due to insurance denials of coverage for treatment. The medical, social and financial costs are simply staggering, despite the fact that doctors are prescribing the treatment. I ask legislators to swiftly approve HB1641 to provide the relief so desperately needed and deserved by Virginia's young people and their families.
I have witnessed firsthand the devastating result that this disease, and lack of treatment, can have on a young person and their family. It is unconscionable to think that friends have had to flee to Mexico to seek effective treatment with proven results, because US insurance companies deny coverage. I support passage of this bill which may literally save young lives.
I am writing to support HB1641. The financial impact that PANS/PANDAS has on families is astronomical. A very close friend of mine has unfortunately encountered this seemingly endless cost of thousands and thousands of dollars. Through this friend, I have met other countless families that also are trying to keep their children alive and are blocked in doing so because of cost. There is a way to help them and so many more families. Can you please help and make this happen this year-2025?!
I am writing to support HB1641. The financial impact that PANS/PANDAS has on families is astronomical. A very close friend of mine has unfortunately encountered this seemingly endless cost of thousands and thousands of dollars. Through this friend, I have met other countless families that also are trying to keep their children alive and are blocked in caring for their own children because of cost. There is a way to help them and so many more families. Can you please help and make this happen this year-2025?!
I have a close family member in Virginia who has PANS/PANDAS. The family has suffered immensely due to insurance denials of coverage for treatment. The medical, social and financial costs are unbearable, despite the fact that the doctors are prescribing the treatment. Please approve HB1641 to provide the relief so desperately needed and deserved by Virginia’s young people and families. Thank you.
Hello, I am writing to strongly encourage swift approval of HB1641. I know three families who have been severely affected by PANS/PANDAS and who have suffered immensely due to insurance denials of coverage for treatment. The medical, social and financial costs are simply staggering, despite the fact that doctors are prescribing the treatment. Please approve HB1641 to provide the relief so desperately needed and deserved by Virginia's young people and their families.
Good afternoon. We have seen first hand the cruel reality of life with PANS/PANDAS. It destroys children's lives and the lives of their families. Delayed treatment can lead to permanent brain damage as the immune system repeatedly attacks the brain. Our kids deserve better than insurance denials when they are sick and desperate for help. Please support this bill that would change so many lives.
My son was diagnosed with PANDAS in 2022 at the age of 5. Three years later, he is now 8. He can no longer attend school. He is not the same person after years of brain inflammation during the most critical developmental period in his life: childhood. After multiple appeals, we were finally able to get his recommended treatment approved and started late last year, but at what cost? This isn't necessarily a disorder that cannot be healed, but unnecessary barriers in the healthcare system prevent timely diagnosis and access to care. Doctors cannot prioritize learning about and treating PANS/PANDAS and other neuroimmune disorders if insurance companies will not cover the diagnostic tests and treatments needed. Coverage gives our kids a fighting chance to access the proven treatments that work. These disorders are destroying Virginia families, removing parents from the workforce, claiming lives of those who can no longer cope, causing divorces, and it does not have to be this way. Please pass HB1641 expeditiously, our families cannot wait!
I am a lifelong VA resident and parent of a child who was diagnosed with PANS/PANDAS 9 years ago. Despite having good insurance and a job as a faculty member for a VA university, I almost went bankrupt trying to obtain medical treatment and care for my child, which was delayed due to VA insurance not covering, delaying, and denying treatment many times we needed it. I should not have to take out a personal loan to fund medical treatment when I have insurance and the cost to children of not covering treatment is too great. Because insurance does not cover treatment in VA, it makes it very hard to find specialists and we have had to often go out of state or private pay for help/treatment. Treatment has been life changing for my child, but not everyone has the resources to access treatment outside of insurance. We should not have to pay out of pocket for treatment for our children when the VA Board of Insurance estimated the cost of coverage to be less than half a cent per member per month. Please help VA children with this condition and provide support for this bill. Our young people deserve access to PANS/PANDAS medical treatment and insurance coverage. Lives depend on this. Thank you.
I am writing in my support of HB 1641. I have two children both diagnosed with PANS/PANDAS. One since the age of 5 and the other 3. We have had to pay an extraordinary amount of money to provide for their specialized care. For example, IVIG infusions were prescribed by a local neurologist/specialist (that we also had to pay out of pocket for visits- evaluation of 1000.00 and follow up care in the hundreds for each visit) and this treatment was denied my insurance. We paid approximately 1000.00 for each of the infusions. We have paid thousands each year for their care. We are fortunate enough to have the resources to do so and to be able to find the care. We currently travel to CT for their care because the lack of training/education and coverage for care in this area. There are so many families suffering from this illness and they do not have the resources to do this. Please help them. Stanford Clinic estimates 1 in 200 children have this diagnosis (many are misdiagnosed or not diagnosed). This illness is not rare and we need your help. Thank you, Jennifer
I am a lifelong VA resident and parent of a child who was diagnosed with PANS/PANDAS 9 years ago. Despite having good insurance and a job as a faculty member for a VA university, I almost went bankrupt trying to obtain medical treatment and care for my child, which was delayed due to VA insurance not covering, delaying, and denying treatment many times we needed it. I should not have to take out a personal loan to fund medical treatment when I have insurance and the cost to children of not covering treatment is too great. Because insurance does not cover treatment in VA, it makes it very hard to find specialists and we have had to often go out of state or private pay for help/treatment. Treatment has been life changing for my child, but not everyone has the resources to access treatment outside of insurance. We should not have to pay out of pocket for treatment for our children when the VA Board of Insurance estimated the cost of coverage to be less than half a cent per member per month. Please help VA children with this condition and provide support for this bill. Our young people deserve access to PANS/PANDAS medical treatment and insurance coverage. Lives depend on this. Thank you.
Dear Committee, I write as a parent of two daughters (now 25 and 27) both have had PANDAS diagnoses since elementary school. Our family has suffered and their lives have been profoundly affected for 15 years. The illness has been "episodic" for both of my daughters. Their "episodes" were triggered by exposure to illness in others, (such as being around someone with strep or pneumonia), these episodes have resulted in sudden onset severe OCD, academic failure due to brain inflammation, anorexia, and ticcing. My daughters have seen doctors in multiple states, and have received every "PANDAS" type of treatment suggested by NIH and other researchers at Yale, Columbia, and USF. We have taken them to doctors of various types, all mainstream practitioners, neurology for example. They both were treated with Plasmapheresis (once for one and twice for the other), IVIG (3 times for one and 1 time for the other), antibiotics (different ones for years when young), and steroid bursts - varying amounts and times. The symptoms of their life crippling PANDAS (also called PANS)such as OCD (opening things with their feet, restricing eating, walking a certain way, rituals, home destroying rages, ticcing, and academic failure, we saw LEAVE them at times or be significantly diminished thanks to these PANDAS treatments. * Many times we were denied coverage for these expensive treatments. We changed insurance companies to try to chase payments for their treatments. We engaged in lengthy insurance appeals with various carriers, we tried carrying multiple insurance contracts too. My husband and I were both researchers, (he an economist with a PhD in Economics.) I have been a Professor at the University of Maryland in Special Education, since 1994, directing graduate programs for teachers and administrators. When my eldest was first diagnosed, we had never heard of the paradigm of PANDAS. Her symtoms came on within a few days. There was an obvious and sudden change as she went from being a top student, an active normal 9 year old to becoming entirely mute, age regressed to the point that she acted like a 3 year old. She held her eyes shut, would only crawl, would not swallow her saliva. We took her to our pediatrician who sent her to a local psychiatrist in Bethesda, MD after seeing her decline for about a week he sent us to Hopkins to see neurology, (Dr. Grados), as the psychiatrist thought it was neurological. Hopkins diagnosis and that of Dr. Rappaport (NIH Emeritus at the time) was that she was suffering from severe OCD, (by this time she was flicking her fingers, and holding painful positions in a ball, with her eyes shut and saliva running out of her mouth, non-verbal for a month.) We took her to numerous specialists that episode -- brain scans etc. no one could help us. Finally, a neurologist saw her, (crawling around his lobby with her eyes closed, saliva dripping, and then holding painful position,) he suggested a steroid burst. That brought her out of that episode. I am cannot express the full cost of suffering caused by this terrible illness. Please contact me if you have further questions. I live in Virginia and work in MD. There were many times we put off treatments waiting for insurance appeals, months to years of their lives were lost. Please pass HB1641. Tori Page-Voth, Ph.D. Clinical Professor, CHSE Dept., University of Maryland, College Park tpv@umd.edu