Public Comments for 01/25/2024 Health and Human Services
HB169 - Maternal Health Data and Quality Measures, Task Force on; State Health Commissioner to reestablish.
The Va Academy of Nutrition and Dietetics (VAND) strongly encourages reconvening this committee that has provided powerful Insights in the past to the disparities in Maternal Health and Mortality and highlighted Va’s higher levels in some population. Please support this important work for the Commonwealth as we work to improve access to care and improved outcomes for women and children in the state. Please reach out if we can provide more information on the role of nutrition in preventing poor outcomes in pregnancy And after the pregnancy. Thank you, Lesley McPhatter, MS, RDN, CSR
I support this bill. This bill provides measures for collecting and evaluating maternal health data to help guide life-saving and quality of life policies in the Commonwealth to improve maternal care, quality, and outcomes for all birthing people.
Regarding HB 169: This bill is urgently needed in our state. While Virginia's Department of Health Review team has worked hard on the issue of reducing maternal mortality, the Journal of the American Medical Association, the March of Dimes and other organizations have found that some states have had more success in recent years in bringing down the disparity between Black mortality and other racial and ethnic groups than Virginia has had to date. In July 2023, JAMA published an article called, "Trends in State Level Maternal Mortality by Racial and Ethnic Groups in the United States", and they found that these deaths were preventable and that Virginia was one of the states with some of the highest disparities in maternal outcomes. Illinois, on the other hand, stands out as an example rapid-paced progress that I hope Virginia will seek to duplicate or otherwise match. I have included a pdf attachment. It is a short document produced by Illinois discussing their approach. I hope the committee will consider language in the bill that will spur efforts to bring down the rate of these entirely preventable deaths a truly urgent matter that a wealthy and resourceful state such as ours should be able to accomplish.
HB188 - Advance Health Care Planning Registry; amendment of regulations.
HB225 - Dentist and Dental Hygienist Compact; authorizes Virginia to become a signatory to the Compact.
AADB is opposed to VA HB225 due to concerns regarding public protection & lowering the current standards for licensure in Virginia. Enactment of this legislation allows for convicted felons to obtain licensure, eliminates the hand skills examination currently required & lowers licensure standards for the profession.
HB252 - Sickle cell disease; statewide registry created, collection of disease case information, report.
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I am a sickle cell caregiver to my son. I fully support all bills that brings awareness and support to this painful disease. I support HB252 where there needs to be a statewide registry. No sickle cell patient should feel judged or labeled as drug seeking which is the reason I support HB257. My son has been admitted two times in 6 months. Each time has been stressful but a plan was put in pace both times and the care was great for him. As an adult, I fear his care may not be a great due to the labels that come with disease by some medical professionals. I feel these bills are a great start leading us in the right direction. We need sickle cell patients to know that they matter and will get the care they deserve. I support HB820, as well as HB255.
To the honorable members of the Health and Human Services Committee I am Robin Whitley the co-Convener for Hampton Roads of the Black Women’s Roundtable VA. We support issues that surround Black Women and Black Girls. Sickle Cell Anemia is prevalent among members in my paternal familial lineage. I was raised to believe I carried a Sickle cell trait but fortunately I do not. So many babies are born to women with this debilitating disease , when in fact with education, tracking, resources and research we can significantly reduce the number. I support HB 252 to develop a statewide registry to help build a database of individuals with SCD and match them with resources, screenings, generate data for funding and implement useful tools and programs. I also support HB255 There has to be a way to screen people to determine if they carry a sickle cell trait and annual physical exams are a good way to start with consent and an option to opt out. Likewise, I strongly support HB 820 to keep up with medical advancements and cutting edge technology and treatments for Sickle Cell Anemia to give assurance to all those diagnosed who should be on a state registry. HB257 is needed for adults who are going through crisis and may not have medical insurance or come to an ER for treatment as are often labeled as drug seeking. Finally, Sickle Cell Anemia is a painful disease but we can work together to make a huge impact. Please support these bills and thank you for considering my written statement.
HB255 - Adult wellness screening; sickle cell disease or sickle cell trait.
I am a sickle cell caregiver to my son. I fully support all bills that brings awareness and support to this painful disease. I support HB252 where there needs to be a statewide registry. No sickle cell patient should feel judged or labeled as drug seeking which is the reason I support HB257. My son has been admitted two times in 6 months. Each time has been stressful but a plan was put in pace both times and the care was great for him. As an adult, I fear his care may not be a great due to the labels that come with disease by some medical professionals. I feel these bills are a great start leading us in the right direction. We need sickle cell patients to know that they matter and will get the care they deserve. I support HB820, as well as HB255.
I hope this message finds you well. I am writing to express my wholehearted support for the proposed bill that mandates adult wellness screening for sickle cell disease or the sickle cell trait during annual physical examinations in the Commonwealth. As the mother of two incredible daughters, Olivia (17) and Morgan Tarrer (13), both diagnosed with sickle cell disease at birth, I am acutely aware of the challenges faced by individuals and families affected by this condition. The introduction of mandatory screening tests is a significant step toward early detection and intervention, aligning perfectly with our collective vision of enhancing the quality of life for those living with sickle cell disease. Our family has recognized gaps in care, prompting us to establish the Virginia Sickle Cell Network—a sustainable network of resource partners dedicated to providing comprehensive support to individuals and families affected by sickle cell. We focus on advocacy, awareness, education, and support to meet the physical, psychosocial, and economic needs of our clients. The proposed bill creates an invaluable opportunity for collaboration. When adults undergo screening for sickle cell disease or trait, we can seamlessly integrate them into our network. The Virginia Sickle Cell Network welcomes individuals, caregivers, healthcare providers, educators, employers, and human services agencies to join our community. Together, we strive to achieve the following objectives: 1. Promote sustainable whole-person health for individuals and families affected by sickle cell disease. 2. Facilitate access to quality care for those who are underinsured, non-"established," or displaced individuals. 3. Connect patients and caregivers to community resources that address known social determinants of health, such as education, finance, food, health, housing, and transportation. 4. Cultivate future healthcare providers, educators, and employers dedicated to the compassionate management of those affected by sickle cell disease, aiming for optimal health outcomes. By supporting mandatory adult wellness screening, you contribute not only to public health but also to the empowerment and well-being of individuals and families affected by sickle cell disease. I encourage you to champion this bill, recognizing its potential to make a positive impact on the lives of countless individuals across the Commonwealth. Thank you for your consideration and commitment to the health and welfare of our community. Sincerely, Khristina Reid kreid@vasicklecellnetwork.org Virginia Sickle Cell Network Kreid@vasicklecellnetwork.org
HB52: Excellent, we're finally getting it. HB255: I would limit this to those people at higher risk for this. There maybe a cost for testing. Not everyone can afford that. The bills finally addressing sickle cell are long overdue. I wish that there was a registry of some sort that medical professionals can access, so that pain medications would not be so stigmatized in this disease.
To the honorable members of the Health and Human Services Committee I am Robin Whitley the co-Convener for Hampton Roads of the Black Women’s Roundtable VA. We support issues that surround Black Women and Black Girls. Sickle Cell Anemia is prevalent among members in my paternal familial lineage. I was raised to believe I carried a Sickle cell trait but fortunately I do not. So many babies are born to women with this debilitating disease , when in fact with education, tracking, resources and research we can significantly reduce the number. I support HB 252 to develop a statewide registry to help build a database of individuals with SCD and match them with resources, screenings, generate data for funding and implement useful tools and programs. I also support HB255 There has to be a way to screen people to determine if they carry a sickle cell trait and annual physical exams are a good way to start with consent and an option to opt out. Likewise, I strongly support HB 820 to keep up with medical advancements and cutting edge technology and treatments for Sickle Cell Anemia to give assurance to all those diagnosed who should be on a state registry. HB257 is needed for adults who are going through crisis and may not have medical insurance or come to an ER for treatment as are often labeled as drug seeking. Finally, Sickle Cell Anemia is a painful disease but we can work together to make a huge impact. Please support these bills and thank you for considering my written statement.
HB257 - Sickle cell anemia; prescription of opioids for pain management.
I am a sickle cell caregiver to my son. I fully support all bills that brings awareness and support to this painful disease. I support HB252 where there needs to be a statewide registry. No sickle cell patient should feel judged or labeled as drug seeking which is the reason I support HB257. My son has been admitted two times in 6 months. Each time has been stressful but a plan was put in pace both times and the care was great for him. As an adult, I fear his care may not be a great due to the labels that come with disease by some medical professionals. I feel these bills are a great start leading us in the right direction. We need sickle cell patients to know that they matter and will get the care they deserve. I support HB820, as well as HB255.
To the honorable members of the Health and Human Services Committee I am Robin Whitley the co-Convener for Hampton Roads of the Black Women’s Roundtable VA. We support issues that surround Black Women and Black Girls. Sickle Cell Anemia is prevalent among members in my paternal familial lineage. I was raised to believe I carried a Sickle cell trait but fortunately I do not. So many babies are born to women with this debilitating disease , when in fact with education, tracking, resources and research we can significantly reduce the number. I support HB 252 to develop a statewide registry to help build a database of individuals with SCD and match them with resources, screenings, generate data for funding and implement useful tools and programs. I also support HB255 There has to be a way to screen people to determine if they carry a sickle cell trait and annual physical exams are a good way to start with consent and an option to opt out. Likewise, I strongly support HB 820 to keep up with medical advancements and cutting edge technology and treatments for Sickle Cell Anemia to give assurance to all those diagnosed who should be on a state registry. HB257 is needed for adults who are going through crisis and may not have medical insurance or come to an ER for treatment as are often labeled as drug seeking. Finally, Sickle Cell Anemia is a painful disease but we can work together to make a huge impact. Please support these bills and thank you for considering my written statement.
HB353 - Hospitals; emergency departments to have at least one licensed physician on duty at all times.
HB404 - Abortion; use of public funds prohibited.
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I've done my homework. Virginia spends a vanishingly small amount on publicly funded abortion care each year -- about four-tenths of a penny per citizen. And that care goes to the poorest people, in the most dire and wrenching of circumstances. Cutting public funding for care that could save their lives is unconscionable. Please vote NO on HB404.
The League of Women Voters strongly opposes this cruel bill, which would remove public funding for abortions either in the case of rape, or if a physician certifies in writing that he believes the fetus will be born with a gross and totally incapacitating physical deformity or with a gross and totally incapacitating mental deficiency. A recent study published in the medical journal JAMA found an estimated 519,981 rapes associated with 64,565 pregnancies in states that ban abortion after conception during the four to 18 months after the bans went into effect. Of those pregnancies, 58,979 occurred in states with no exception for rape. Do you really want Virginia to be part of those statistics? We urge you to vote No on this bill.
Hello, I’m writing on behalf of Progress Virginia and we strongly oppose HB404. We all want to live in a community where every family is strong and healthy. Everyone should have the opportunity to thrive, regardless of race, income level, zip code, immigration status, or gender identity. But that becomes impossible when people in our community can’t make decisions for themselves about whether, when, and how to become parents. Right now, thousands of our friends and neighbors are struggling to access the full range of reproductive health services, including abortion and birth control, because of barriers thrown up by anti-reproductive health politicians. We need to come together across our differences and oppose legislation like HB404 so that everyone, no matter their background, can make decisions about what their family looks like for themselves.
Within the attachment, the League of Women Voters of Virginia's opposes HB404, and the reasons are mentioned.
HB537 - Home Visiting Program; established, report.
HB570 - Prescription Drug Affordability Board; established, drug cost affordability review, report.
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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
The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis), a patient organization led by people affected by AiArthritis diseases, shares the committee’s goal of lowering patient out-of-pocket costs so that they can more easily maintain their health. However, we urge the committee to reject empowering a prescription drug affordability board (PDAB) to lead these efforts, which could ultimately cause more harm by creating more barriers between patients and their needed medications. AiArthritis has been actively involved in other states that have recently implemented local PDABs, including Colorado and Oregon, and have seen firsthand the limitations of the PDAB model in those states. Based on what we have seen, we believe that PDABs are ineffective in identifying and solving the actual problems patients with chronic conditions are facing when attempting to access their medications. Focusing solely on the price of drugs ignores the many complicated factors that ultimately drive costs up for patients and oversimplifies a very complex process. To employ a healthcare analogy, with PDABs policymakers are seeking to address a symptom rather than the underlying condition. We encourage policymakers to focus on these existing and pressing affordability and access issues, which originate from payers (insurance companies and pharmacy benefit managers (PBMs)). Additionally, reviewing only a handful of medications positions PDABs to create further inequities, picking winners and losers among patients and patient populations. We urge your committee to focus instead on the broader healthcare industry when considering reforms and identify long-term solutions rather than short-term relief for a limited few. Some PDABs have been given the authority to review prescription drug costs and set upper payment limits for them. Setting upper payment limits (UPLs) for drugs might endanger their accessibility in the state or limit appropriate reimbursement for the physicians that administer them. Patients with complex and chronic conditions often spend years identifying treatments that work for them. UPLs will not lower prescription drug costs for patients because they do not lower out of pocket costs. Additionally, treatments can also work for years but then become less effective, forcing patients to change therapies. There is no “one size fits all” health solution; therefore, it is critical that health policies do not impede access to treatments or lead to fewer options for patients. Proposals such as these target the most innovative medicines, disproportionately impacting patients with diseases where there is high unmet need and where low-cost treatment options are not available (e.g. rare diseases), running counter to the aims of personalized medicine and availability of new treatments.
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 here to speak and endorse Del. Delaney's Prescription Drug Affordability Board bill.
My dad is battling stage 4 prostate cancer. He was diagnosed on 4/27/2023 and on 6/15/2023 we learned it was all over. Things looked scary yet we learned about a drug called Xtandi that could keep him with us longer. It is $8800 a month and we started going through the process of getting insurance to approve it. If they did approve it the cost would be $1905 a month. My parents are retired teachers and my dad gave 36 years to the students in Welding and Ag classes. My brother and I vowed they would get whatever they needed to fight this monster. I learned $8800 is pretty cheap for a life sustaining drug. $25,000 up to $90,000 is what some are charged. 1 in 4 Virginians don't take the right amount of prescriptions because of cost. My dad is lucky that we've made it work yet he taught me to look out for others. When you're fighting for your life you don't have the time to fight for drugs that will save you. Please support this bill and make it easier for others to get their prescription drugs. I'm currently on leave from my job to care for my dad and help my parents. If you need to ask any questions please feel free to email at robing98@gmail.com. Please vote the right way!
I'm not sure which bill I'm commenting on entirely. All I know for sure is I'm a type 1 diabetic of 30 years. And our government seems to care very little about my health or the insane costs of the medication that I absolutely have to have to live. Or getting the care I need. Which has been expensive, and has kept me struggling to survive pay rent or see the many doctors I need to see. I am ready to share my story. About my lows where I wake up in the hospital then wind up with an $8000 hospital bill as well as a $4000 bill for a 10 minute ambulance ride. Or about my highs, or just about the struggle of being a Diabetic who was uninsured who struggles to survive in a government that seems to care more about pharmaceutical companies profits than it's citizens health. I have quite a bit to say on the subject and my struggles as a diabetic.
discussing impact of changes to payment structure for independent infusion centers.
I am the Executive Director of the Rare Access Action Project. My family has been affected by rare diseases. Because of that I have spent much of my career in the life sciences advocating for access to rare disease therapies and supporting rare families. Only 5% of rare diseases have an FDA approved treatment. For one-third of individuals with a rare disease, it can take between one and five years to receive a proper diagnosis. Half of all patients diagnosed with a rare disease are children, and as many as 3 in 10 children with a rare disease will not live to see their 5th birthday. For the few fortunate to have a treatment, patients face barriers to these therapies across our health care system in addition to facing a patient journey filled with misdiagnosis and lack of treatment options. Having seen PDABs in other states, we are very concerned. Since the first PDAB was created in 2019 by the Maryland legislature, PDAB legislation has been passed in 8 states (Colorado, Maine, Michigan, Minnesota, New Hampshire, Ohio, Oregon, and Washington). Since 2019, the experiment in government drug price controls has amassed a dubious record of success. Maryland, the oldest of the PDABs, has yet to become operational, and others have struggled to fulfill their mission. The pharmaceutical ecosystem is more complex than proponents portray it, and PDAB legislation patches on a state bureaucracy with little understanding of pharmaceutical pricing policies and the implications of their decisions. Pharmaceutical products are purchased across the United States with Virginia involved in an interstate marketplace that includes a network of federal and state discount and rebate programs (Medicaid best price, 340b pricing, VA, FFS as well as the calculations and penalties that are attached to them). Further, many commercial plans and PBMs negotiate substantial discounts, and some payers have already begun to implement value-based pricing. States such as Arizona are exploring risk pooling for therapies and the uninsured, as well as reinsurance. Price controls from PDABs could jeopardize efforts to innovate value and payment in the pharmaceutical ecosystem. Also consider, rare disease patients increasingly participate in Center of Excellence care. Universities and larger hospital systems have become hubs for both care and treatment. Drugs are purchased and administered for some rare patients outside of Virginia. Challenges will face Virginian rare patients who are on a therapy purchased outside the state beyond the purview of the Virginia PDAB. And payment for those medicines will create risk for those providers, potentially choking off access to that necessary treatment. We urge you to ensure that no patient is left fearful of losing access to treatments that offer them a chance at a better tomorrow. We believe there are solutions that can enhance affordability across healthcare. But proponents of PDAB are focused on an experimental program that has generated zero savings for patients since the first PDAB was created in 2019. We urge you to vote no on HB570. We look forward to working with you on meaningful solutions to healthcare affordability.
The Biotechnology Innovation Organization (BIO) respectfully opposes HB 570, which would create a Prescription Drug Affordability Board tasked with reviewing prescription drug costs and setting upper payment limits for specified prescription drugs. Government price controls like those proposed by this bill are an especially drastic action with unpredictable consequences. While the intent of this bill is to lower drug prices, we fear HB 570 will fail to bring down costs for consumers or institutions and instead disincentivize development of new therapeutic breakthroughs. This bill will not lower prescription drug costs for patients because it does not address out-of-pocket costs. Patients pay a given price when they visit a pharmacy based on what their health insurer determines—it is for this reason why two patients will pay a different price for the same drug. Out-of-pocket costs have been rising for patients as a result of decisions made by health insurers. HB 570 does not address the price patients pay out-of-pocket and will therefore not directly impact patient affordability for prescription medications.
Please see the attached letter from The Biotechnology Innovation Organization (BIO) in opposition to HB 570.
Small business support for PDAB and why it's critical to my workforce.
HDA respectfully opposes HB 570, Establishing a PDAB. HDA is the national trade association representing healthcare wholesale distributors — the vital link between the nation’s pharmaceutical and healthcare manufacturers and more than 330,000 pharmacies, hospitals, and other healthcare settings nationwide. Wholesale distributors are unlike any other supply chain participants. Distributors are primarily responsible for the physical handling and logistics of medicines and healthcare products, and have no role in determining the list prices for drugs or the amount patients pay at the counter. Rather, HDA members ensure that over 95% of all pharmaceutical products arrive to over 5,800 sites of care in Virginia. While HDA supports the state’s efforts in seeking a better understanding of the prices that consumers see at the pharmacy counter, based on our members' supply chain expertise, we have strong concerns regarding the upper payment limit (UPL) established in the legislation, the use of maximum fair price (MFP), and the impact of these policies on the physical supply chain. State-level UPLs do not adequately reflect how prescription drugs are bought and paid for in the U.S. A state-level UPL, especially a UPL following federal MFP limits, would place caps on in-state purchases but not out-of-state purchases, ultimately limiting the ability of pharmacies, clinics or other points of care to recoup costs for administering or dispensing these products, which could result in sites of care being unable to stock these medications. In short, a UPL puts patient access to timely medications at risk. While HDA is concerned over the impact of this type of proposal, we would like to express our appreciation for the inclusion of “a representative with knowledge in…supply chain business models” on the Stakeholder Council. As noted, wholesale distributors do not set list prices or play any role in determining the amount patients pay for medicines at the counter, our members are the logistical experts of the supply chain, and HDA believes it is important that the stakeholder council is representative of the full supply chain. We invite the Committee to review our full letter, and to contact HDA at any time to discuss why we oppose HB 570. Thank you for your consideration of our concern.
Tigerlily Foundation is a national women's oncology organization providing education, advocacy, & hands-on support for young women before, during, & after cancer. I write to you today to express our organization’s concerns over HB 570, legislation that would establish a prescription drug affordability board (PDAB) in Virginia. Establishing a PDAB in Virginia will block access to essential medicines that Virginians rely on to manage symptoms & lead healthier lives, particularly for patients living with cancer & other chronic conditions & could further exasperate already existing health inequities. Prescription drug price setting policies that often accompany PDABs, such as upper payment limits (UPLs), fail to protect access to timely & effective care & can actually increase risks for patients who need consistent access to medications to manage their health. UPLs limit reimbursement for hospitals, doctors, & pharmacists who dispense effective treatments that help patients manage disease. As a result of the proposed PDAB, Virginia patients could be forced to search elsewhere to access medications they need & could end up forgoing critical treatments altogether, which can lead to adverse health consequences including death & higher medical costs in the future. In addition, establishing a PDAB in Virginia could divert critical research resources elsewhere & have a chilling effect on the development of new medicines for patients who have limited or no treatment options today for their condition. Furthermore, any proposed PDAB should be designed to include patients & be representative of those populations. This would also include patient advocacy organizations as community advisory representatives of the Virginia House to ensure that these & future recommendations include all stakeholders. For patients who are diagnosed with complex cancers like triple negative breast cancer (TNBC), a hard-to-treat type of breast cancer that has limited treatment options & is diagnosed in Black & Hispanic women at younger ages & later stages, timely & equitable access to medical treatments prescribed by one’s physician is critical. However, drug price controls can unintentionally threaten vital pathways for patients to access cutting-edge medicines that can help them survive disease. While we commend the Virgina General Assembly & other elected leaders in Virginia for exploring solutions that alleviate health care access & affordability challenges & reduce health disparities, any policy solution must not come at the expense of vulnerable communities in Virginia, particularly Black & brown communities who already face disproportionate barriers. TNBC, among other cancers and diseases, disproportionately affects Black women, & establishing a PDAB in Virginia would have disastrous consequences on access to care, future innovative treatments, & efforts to achieve health equity. On behalf of the communities Tigerlily Foundation serves, we thank you for your leadership in seeking policy solutions to address barriers to care that Virginia patients face. However, HB 570 falls short of that goal. On behalf of our community & as an 18 year survivor of TNBC myself & a Virginia resident, I thank you for your consideration of our concerns. Please do not hesitate to contact me directly at maimah@tigerlilyfoundation.org if Tigerlily Foundation can be a resource to you and your staff. Sincerely, Maimah Karmo Founder & CEO , Tigerlily Foundation
Thank you for the opportunity to submit comments. Please see the attached letter.
The National Infusion Center Association (NICA) is a nonprofit organization formed to support non-hospital, community-based infusion centers caring for patients in need of infused and injectable medications. Our organization writes to express concerns with the Board’s ability to establish an upper payment limit for prescription drugs. We applaud Virginia lawmakers for attempting to address drug costs for patients, and we appreciate that the bill notes this will be done with consideration for administration costs. However, we are still concerned that an upper payment limit will not only fail to achieve the intended goal, but it will also harm vulnerable patients in the process. Establishing a ceiling for how much an infusion provider can be reimbursed for a drug will disrupt the delicate economics of medical benefit drug delivery and put smaller, community providers—that represent the lowest-cost care setting for these expensive medications—at risk. Infusion providers typically acquire, administer, and bill for drugs through a buy-and-bill model. Under this model, providers are reimbursed for drugs they previously purchased and stored along with a small payment for professional services that does not begin to cover the overhead of their business, known as the admin fee. To remain in business, infusion centers rely on their drug payments to offset the incredible cost-reimbursement disparity on the professional services side. Drug payments are the economic lynchpin to offset practice expenses, including inventory management, staff salaries, and office space. Lower drug payments to infusion providers will force most of the state’s community-based infusion centers to shutter their doors or discontinue administering certain drugs, forcing patients into more expensive hospital care settings or potentially ending their treatments. Upper pricing limits put a ceiling on the reimbursement for certain drugs, but they do not guarantee that the drug will actually be cheaper for patients. An upper payment limit will only establish how much insurers in the state pay for a drug. It will not change the actual cost of drug acquisition and administration for providers, and it will not change what insurers require from patients through copays and coinsurance (most infusion patients use copay assistance to cover the cost of their medications, which insurers are trying to prevent through copay accumulator programs). Though well-intended, we fear that upper payment limits will harm infusion providers and their patients, leading to access issues across the state. Taking time to better understand the buy-and-bill model that most, if not all, infusion providers rely on, will only benefit the welfare of providers and patients in the state. We hope that the Committee will be open to exploring other options, such as an amendment that would exempt infusion providers from the impact of this bill - a provider carve-out. This would avoid disruptions to community-based care delivery and keep Virginia infusion centers and patients safe.
January 31, 2024 RE: Written Testimony for House Committee on Health and Human Services February 1, 2024 hearing for HB 570 by Delegate Delaney. The National Minority Quality Forum (NMQF) is a 501(c)(3) not-for-profit research and advocacy organization based in Washington, DC. The mission of NMQF is to reduce patient risk by assuring optimal care for all. Our vision is an American health services research, delivery and financing system whose operating principle is to reduce patient risk for amenable morbidity and mortality while improving quality of life. NMQF is committed to reducing patient risk and ensuring equitable access to beneficial treatment and care for Virginians and communities nationwide. The National Minority Quality Forum is writing to you to share our concerns that a Virginia Prescription Drug Affordability Board (PDAB) may only serve to impede the progress toward achieving health care equity for all Virginians. Price setting policies that accompany the PDAB such as an upper payment limit (UPL) increase risks for amenable morbidity and mortality for patients who depend on Medicaid to assure effective and consistent access to prescription medications to manage their health. UPLs limit reimbursement to hospitals, doctors, and pharmacists who dispense drugs deemed the most effective to help patients manage a chronic condition. While healthcare systems that serve a patient mix with higher-income levels may be able to withstand the losses from the lack of reimbursements, hospitals that are responsible for disenfranchised communities may not. Ensuring the affordability of high quality, efficacious medications is essential to the elimination of inequities in health care and outcomes. This affordability must not be effectuated by promulgating public policy that increases the health and financial costs vulnerable populations and communities in Virginia, particularly rural, Black and brown communities who are reliant upon and equity-centric public policy construct. Price setting policies that confound access to care are a barrier to inclusion in data collection and investment in research efforts that improve the quality of care for historically excluded populations. In closing, the National Minority Quality Forum shares your concerns regarding the need to assure that Virginia’s health care safety net is financially viable; however, that financial viability must not service to compromise the health and financial security of Medicaid beneficiaries. We would welcome an opportunity to partner with the Commonwealth of Virginia to explore effective and sustainable policy avenues to improving the quality and outcomes of care for all Virginians. If you have any questions regarding this public comment, please direct them to Gretchen C. Wartman, NMQF Vice President for Policy and Program (gwartman@nmqf.org). Sincerely, Gary A. Puckrein, PhD President and Chief Executive Officer National Minority Quality Forum
I am submitting my statement in support of HB 570, PDAB, patroned by Del Delaney. I must take four injections per year of Skyrizi which has a co-pay of thousands of dollars per injection. Medicare pays the rest of the cost. For Virginians who are not on Medicare, they must pay as much if not more, subject to their private insurance. If on Medicaid., then the Commonwealth must pay the entire cost. HB 570 will limit Virginians copays by capping the upper limit that can be charged for these medications. Tens of thousands of Virginians, like me, must take expensive prescriptions or allow their health to suffer by not taking prescriptions. I will be protected by the Biden Adminisrtation's Inflation Reduction Act which this year and in 2025 will continue to limit my copays. But Virginians not on Medicare will not have this opportunity. This situation exists because Skyrizi remains on patent. I don't have a choice. As a taxpayer, I will also benefit because the Commonwealth will spend less on prescription drugs for those on Medicaid, those using state health plans and prison inmates. The savings of millions of dollars spent by the state will be greatly appreciated by the constituents of the General Assembly and the Governor when this bill is signed into law. Thank you.
Thank you for accepting my letter in regard to HB 570. I represent cystic fibrosis patients in VA who are rightly concerned about the prospect of a Prescription Drug Affordability Board. On their behalf we ask you to read the attached letter and stop moving this bill forward. At the very least seek advice from as many advocates like me as possible. The patient voice needs to be heard, they should have a voice on the board, an appeals process and more. Thank you. Laura Bonnell
Please allow us to share our written testimony for Thursday’s House Hearing on HB 570. We write to share our deep concerns of the potentially devastating impact of the newly proposed Prescription Drug Affordability Board (PDAB) on patients living in Virginia. The attached letter outlines these concerns in detail. We would be happy to discuss these concerns more or answer any questions you have. The Alliance for Health Innovation (Alliance) is a group of diverse cross-sector stakeholders that together represent patients, providers, caregivers, academia, biopharmaceutical innovators, and business communities. Led by the Global Coalition on Aging (GCOA), the Alliance is committed to establishing the importance of innovation in achieving healthy aging and advocates for state policy solutions that support a thriving innovation sector that enables Virginians and other communities to live longer – and healthier – lives.
Honorable Chairman Ward, Vice Chair Herring, Members of the House Labor and Commerce Committee, and respected staff, Community Access National Network is gravely concerned with the nature of HB 570 as a "quick fix" to complicated issues, posing serious threats to access of timely treatment for people living with HIV in the state of Virginia. Attached is a detailed letter of concern regarding the proposed prescription drug advisory board. As a patient group, our first and foremost concern is the bill's abject lack of focus on patient perspectives and failure to prioritize patient experience as an aimed outcome. In our experience in other states, namely Colorado, boards lacking specified patient voices are dismissive and otherwise unresponsive to patient concerns. This is especially troubling as PDABs are typically targeting medications used to treat rare diseases, cancer, and public health concerns, like HIV and Hepatitis C - threatening patient access to lifesaving care. Similarly, these boards tend to lack expertise across the drug channel and are exceptionally selective in pursuing information - often neglecting to consider conflicts of interest with contractors serving the board or failing to disclose these conflicts. Nothing in HB 570 requires assessment or monitoring of potential unintended consequences. Nothing HB 570 requires pass through of any "savings" to patients or plan sponsors. Rather HB 570 seeks to establish "winners" and "losers" among industry interests while leaving patients behind. Whether the "winners" are pharmacy benefit managers or particular manufacturers, patients are removed entirely from decision making of our own care but for the mere afterthought of public comments. CANN urges the committee to seek a different route, one focused on patients, evaluating barriers to care, like consolidation of the provider and pharmacy spaces, addressing payor originated administrative burdens, and tackling the self-dealing nature of "vertical integration" among these interests at the expense of patients, our employers, and the state. This is NOT that bill. We urge you to vote NO on HB 570. CANN is ever at your service and happy to discuss real solutions for patients, should the legislature find the pleasure to do so.
I am the Executive Director of the Rare Access Action Project. My family has been affected by rare diseases. Because of that I have spent much of my career in the life sciences advocating for access to rare disease therapies and supporting rare families. Only 5% of rare diseases have an FDA approved treatment. For one-third of individuals with a rare disease, it can take between one and five years to receive a proper diagnosis. Half of all patients diagnosed with a rare disease are children, and as many as 3 in 10 children with a rare disease will not live to see their 5th birthday. For the few fortunate to have a treatment, patients face barriers to these therapies across our health care system in addition to facing a patient journey filled with misdiagnosis and lack of treatment options. Having seen PDABs in other states, we are very concerned. Since the first PDAB was created in 2019 by the Maryland legislature, PDAB legislation has been passed in 8 states (Colorado, Maine, Michigan, Minnesota, New Hampshire, Ohio, Oregon, and Washington). Since 2019, the experiment in government drug price controls has amassed a dubious record of success. Maryland, the oldest of the PDABs, has yet to become operational, and others have struggled to fulfill their mission. The pharmaceutical ecosystem is more complex than proponents portray it, and PDAB legislation patches on a state bureaucracy with little understanding of pharmaceutical pricing policies and the implications of their decisions. Pharmaceutical products are purchased across the United States with Virginia involved in an interstate marketplace that includes a network of federal and state discount and rebate programs (Medicaid best price, 340b pricing, VA, FFS as well as the calculations and penalties that are attached to them). Further, many commercial plans and PBMs negotiate substantial discounts, and some payers have already begun to implement value-based pricing. States such as Arizona are exploring risk pooling for therapies and the uninsured, as well as reinsurance. Price controls from PDABs could jeopardize efforts to innovate value and payment in the pharmaceutical ecosystem. Also consider, rare disease patients increasingly participate in Center of Excellence care. Universities and larger hospital systems have become hubs for both care and treatment. Drugs are purchased and administered for some rare patients outside of Virginia. Challenges will face Virginian rare patients who are on a therapy purchased outside the state beyond the purview of the Virginia PDAB. And payment for those medicines will create risk for those providers, potentially choking off access to that necessary treatment. We urge you to ensure that no patient is left fearful of losing access to treatments that offer them a chance at a better tomorrow. We believe there are solutions that can enhance affordability across healthcare. But proponents of PDAB are focused on an experimental program that has generated zero savings for patients since the first PDAB was created in 2019. We urge you to vote no on HB570. Our written testimony is included in an additional document.
Letter attached
Thank you to Chair Ward and Members of the House Labor and Commerce Committee for the opportunity to weigh on an issue that directly affects the health and wellbeing of the patients I serve. I write to you to ask for your support for HB570 in establishing a Prescription Drug Affordability Board in Virginia. As a physician who has practiced in our Commonwealth for years, I see every day how patients struggle to pay for expensive medications that I prescribe. Because every individual is unique, with unique health needs, doctors prescribe the best medications that are tailored to best meet the special needs of our patients. Unfortunately, prescription drugs are becoming more expensive every year. And when prescription drugs become more expensive, my patients feel the pinch. For those who have to pay out-of-pocket, prescription drugs can be downright unaffordable. In some cases, my patients have told me that they pay thousands of dollars for medications they need to be healthy. Many Virginians are in the same boat. Too many of them are skipping their medications or splitting pills. A majority of Virginians are concerned they won’t be able to pay for their prescription drugs. Prescription drugs don’t work if people can’t take them. Medications don’t work if people split pills and skip them every other day. And in the case of certain medical conditions, not taking medications as prescribed can have harmful, even potentially deadly, consequences. No patient should have to ration their care. No patient should be denied their medications because cost is a barrier. By creating an independent panel of health care experts who will weigh data and involve all stakeholders, we can begin the work of bringing down high drug costs and finally bring some balance and fairness to a health care system that has long squeezed hardworking Virginia families. For these reasons, I strongly encourage you to support HB570.
Details in attached memo.
Thank you for the opportunity to submit testimony in support of House Bill 570 to create a Prescription Drug Affordability Board. As a physician, I know too well how critical access to prescription drugs is for my patients. Prescription drugs are a key tool in a doctor’s toolbox for helping patients manage health conditions, prevent complications from illness, and improve quality of life. But right now, too many of my patients simply cannot afford the drugs I prescribe them. They may be forced to take a less effective, more affordable alternative, split pills, or just forgo their medication altogether. These patients aren’t alone — 1 in 4 Virginians who depend on prescriptions chooses not to take those medications solely because of the cost. At the same time, large pharmaceutical companies are making record profits. The largest one nearly tripled its earnings over the past two years, making $100 billion in revenues. In 2023, pharmaceutical companies hiked the list prices for 112 drugs at a rate higher than the rate of inflation. No Virginian should be forced to split or skip pills while pharmaceutical corporations are making money hand over fist. It’s time for lawmakers to take action. Doctors like me support the creation of a Prescription Drug Affordability Board to lower the cost of medicine by setting cost limits on how much patients will pay for certain medications. We trust that the health and medical experts who comprise the Board will use a data-based approach to set reasonable rates for patients to pay. By creating a Prescription Drug Affordability Board, Virginia lawmakers can help hold greedy pharmaceutical corporations accountable and make the market more fair. But more importantly, you can help my patients and all Virginians who rely on prescription drugs better afford the medications they need to live and thrive. I urge you to pass HB 570 without delay.
Chair Sickles and Members of the Committee, On behalf of the Arthritis Foundation, representing the nearly 60 million Americans and 26% of Virginia residents living with doctor-diagnosed arthritis, we would like to provide comments on HB 570, a bill to create a Prescription Drug Affordability Board (PDAB). People with autoimmune forms of arthritis often rely on biologic medications to maintain their health, and as these are expensive medications, issues of high drug costs and access are always a top priority. Please find the attached comments for information only on this legislation and considerations for those living with arthritis in Virginia. Thank you for your consideration. Melissa Horn Director of State Legislative Affairs, Arthritis Foundation
HB593 - Neurobehavioral and neurorehabilitation facilities; waiver services for individuals w/brain injury.
HB781 - Maternal Health Data and Quality Measures, Task Force on; State Health Commissioner to reestablish.
The Va Academy of Nutrition and Dietetics (VAND) strongly encourages reconvening this committee that has provided powerful Insights in the past to the disparities in Maternal Health and Mortality and highlighted Va’s higher levels in some population. Please support this important work for the Commonwealth as we work to improve access to care and improved outcomes for women and children in the state. Please reach out if we can provide more information on the role of nutrition in preventing poor outcomes in pregnancy And after the pregnancy. Thank you, Lesley McPhatter, MS, RDN, CSR
HB820 - Sickle cell disease; annual review of medication and treatment, report.
I am a sickle cell caregiver to my son. I fully support all bills that brings awareness and support to this painful disease. I support HB252 where there needs to be a statewide registry. No sickle cell patient should feel judged or labeled as drug seeking which is the reason I support HB257. My son has been admitted two times in 6 months. Each time has been stressful but a plan was put in pace both times and the care was great for him. As an adult, I fear his care may not be a great due to the labels that come with disease by some medical professionals. I feel these bills are a great start leading us in the right direction. We need sickle cell patients to know that they matter and will get the care they deserve. I support HB820, as well as HB255.
I hope this message finds you well. I am writing to express my wholehearted support for the proposed bill that mandates adult wellness screening for sickle cell disease or the sickle cell trait during annual physical examinations in the Commonwealth. As the mother of two incredible daughters, Olivia (17) and Morgan Tarrer (13), both diagnosed with sickle cell disease at birth, I am acutely aware of the challenges faced by individuals and families affected by this condition. The introduction of mandatory screening tests is a significant step toward early detection and intervention, aligning perfectly with our collective vision of enhancing the quality of life for those living with sickle cell disease. Our family has recognized gaps in care, prompting us to establish the Virginia Sickle Cell Network—a sustainable network of resource partners dedicated to providing comprehensive support to individuals and families affected by sickle cell. We focus on advocacy, awareness, education, and support to meet the physical, psychosocial, and economic needs of our clients. The proposed bill creates an invaluable opportunity for collaboration. When adults undergo screening for sickle cell disease or trait, we can seamlessly integrate them into our network. The Virginia Sickle Cell Network welcomes individuals, caregivers, healthcare providers, educators, employers, and human services agencies to join our community. Together, we strive to achieve the following objectives: 1. Promote sustainable whole-person health for individuals and families affected by sickle cell disease. 2. Facilitate access to quality care for those who are underinsured, non-"established," or displaced individuals. 3. Connect patients and caregivers to community resources that address known social determinants of health, such as education, finance, food, health, housing, and transportation. 4. Cultivate future healthcare providers, educators, and employers dedicated to the compassionate management of those affected by sickle cell disease, aiming for optimal health outcomes. By supporting mandatory adult wellness screening, you contribute not only to public health but also to the empowerment and well-being of individuals and families affected by sickle cell disease. I encourage you to champion this bill, recognizing its potential to make a positive impact on the lives of countless individuals across the Commonwealth. Thank you for your consideration and commitment to the health and welfare of our community. Sincerely, Khristina Reid kreid@vasicklecellnetwork.org Virginia Sickle Cell Network Kreid@vasicklecellnetwork.org
To the honorable members of the Health and Human Services Committee I am Robin Whitley the co-Convener for Hampton Roads of the Black Women’s Roundtable VA. We support issues that surround Black Women and Black Girls. Sickle Cell Anemia is prevalent among members in my paternal familial lineage. I was raised to believe I carried a Sickle cell trait but fortunately I do not. So many babies are born to women with this debilitating disease , when in fact with education, tracking, resources and research we can significantly reduce the number. I support HB 252 to develop a statewide registry to help build a database of individuals with SCD and match them with resources, screenings, generate data for funding and implement useful tools and programs. I also support HB255 There has to be a way to screen people to determine if they carry a sickle cell trait and annual physical exams are a good way to start with consent and an option to opt out. Likewise, I strongly support HB 820 to keep up with medical advancements and cutting edge technology and treatments for Sickle Cell Anemia to give assurance to all those diagnosed who should be on a state registry. HB257 is needed for adults who are going through crisis and may not have medical insurance or come to an ER for treatment as are often labeled as drug seeking. Finally, Sickle Cell Anemia is a painful disease but we can work together to make a huge impact. Please support these bills and thank you for considering my written statement.
HB1064 - Neurobehavioral science unit; established, waiver services for individuals w/traumatic brain injury.
Bring our 12 Virginians home from Braintree Manor in Braintree, Massachusetts! My husband Eric Fletcher, has suffered negligence and abuse there for 16 years. DMAS places are victims there and forgets about them. DMAS has never visited the facility in 16 years. I have shown proof to DMAS of the abuse and neglect my husband and others have suffered. I've witnessed first hand as well. We need a TBI unit in Virginia!!! Be compassionate, vote yes for Bill 1064. I'm Exhausted from an Exhausted System! Kathleen Fletcher 7577291729
Bring our 12 Virginians home from Braintree Manor in Braintree, Massachusetts! My husband Eric Fletcher, has suffered negligence and abuse there for 16 years. DMAS places are victims there and forgets about them. DMAS has never visited the facility in 16 years. I have shown proof to DMAS of the abuse and neglect my husband and others have suffered. I’ve witnessed first hand as well. We need a TBI unit in Virginia!!! Be compassionate, vote yes for Bill 1064. I’m exhausted from an exhausted system!! Kathleen Fletcher 7577291729
HB1165 - Persons with disabilities; adds definitions related to rights.
The Virginia Civic Engagement Table (VCET) is a nonpartisan 501(c)(3) organization dedicated to voting rights and civic engagement, headquartered in Richmond, VA. Our mission is to strengthen and create a fairer Virginia by empowering everyday Virginians. VCET serves as the anchor for the Virginia Election Protection Coalition, the largest nonpartisan pro-voter coalition in the Commonwealth, working year-round to advance the freedom to vote. We support HB 1165, a crucial bill that offers essential details to eliminate barriers for Virginians. The additional definitions in HB 1165 will contribute to ensuring accessibility to all voters at Virginia's polling places, providing voters and elections administrators with a clearer understanding of how they can ensure the freedom to vote is accessible to all Virginians. We sincerely hope that this committee will favorably report HB 1165. Thank you.
HB93 - Alpha-gal syndrome; Board of Health shall adopt regulations to include on reportable disease list.
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Please vote in favor of this legislation. So many folks, just in this county alone have been diagnosed positive for Alpha Gal. Listing it as a reportable disease is a next step toward greater understanding and acceptance of the syndrome, therefore one step closer to consideration for greater research for prevention and treatment.
As a Virginia resident who has suffered from Alpha-gal syndrome (AGS) for over 24 years, I would like to register my strong support for HB 93 and urge its passage in the General Assembly. AGS is a tick-borne disease that causes a serious allergy to a sugar in mammal meat and mammal products (including many medicines). AGS is spread through the bite of a lone star tick. Shortly after moving to VA, where I immediately fell in love with hiking in the Shenandoah Mountains, I began to suffer unexplained bouts of severe hives. Allergists had no answers. Next came episodes of severe gastrointestinal distress and mysterious drops of blood pressure that send me to the ER. Eventually, the reactions got worse and I ended up taking my first ambulance ride to the ER in the middle of the night, in and out of consciousness from anaphylaxis. Eight years after my first reaction, I finally had a tentative diagnosis. Testing would eventually show that I was severely allergic to mammal meat. Several years later, after another very scary and cold January ride in an ambulance to the ER, I discovered I could also not tolerate dairy due to AGS. Navigating menus and ingredient lists is a constant battle, but my worst fear is being in an accident, ending up in the ER unconscious, and being administered one of many drugs that are made with mammal ingredients. A single dose of heparin, a very common blood thinner, could put me into severe anaphylaxis or even kill me. Thankfully, I am not as sensitive to minor amounts of mammal as some in the AGS patient community who suffer reactions even to the fumes of cooking mammal. I tell you all of this to emphasize that AGS is a life-altering, and even life-threatening, condition. As not just an allergy, but also a tick-borne disease, targeted public health education in hot spot areas can help prevent the disease from spreading. The Centers for Disease Control, which is encouraging states to report, has stated that “the prevalence of this condition is largely unknown.” They describe “a critical need” for “improved surveillance to aid public health decision-making.” This is especially important in Virginia. If surveillance is not improved, it will be hard to justify additional federal resources, even though VA is an AGS hot spot. Currently, most federal tick-borne disease funding is dedicated to preventing Lyme disease. However, 95% of tick encounters in VA involve lone star ticks – ticks not thought by the CDC to carry Lyme. Therefore, determining the true prevalence of AGS in VA could be key to increasing the allocation of resources, not just for healthcare provider education on AGS, but also for public health outreach related to tick bite prevention in general. Out of the 6 ER visits I have had with AGS reactions, only once did the doctor have a working understanding of AGS. Increased healthcare provider education might mean that my medic alert bracelet would be enough to save me (and many other Virginians with AGS) if I were admitted to the hospital in an emergency. A better understanding of the prevalence of the disease could also ensure Virginians are diagnosed sooner, something that might help save their lives. Finally, it would be an enormous public benefit if we could prevent more people from getting AGS in the first place by targeting resources to public education on tick bite avoidance. HB93 is an important public health measure for Virginia, and I urge you to vote yes.
As Cofounders of Two Alpha Gals, we have been helping others navigate the complexities of living with alpha-gal syndrome (AGS) since 2019, and we strongly support HB93. In addition to living with AGS ourselves, we have unique insight into the direct impact of the condition on the community through our mentorship program. A primary cause of concern for patients living with AGS is lack of knowledge among healthcare providers. In July 2023, the CDC reported that in a nationwide survey of healthcare providers, 42% were unaware of AGS, and another 35% were not confident in their ability to diagnose or manage patients with AGS. The passing of HB93 would provide a vehicle for cohesive and comprehensive education among healthcare providers in Virginia and is a foundational step toward directly improving the wellbeing of Virginians impacted by AGS. Because the number of cases continues to increase, it is critical to pass HB93 in order to determine the immediate effect of AGS on Virginians. Sincerely, Debbie Nichols and Candice Matthis, Two Alpha Gals LLC, www.TwoAlphaGals.com
As a board-certified practicing allergist and immunologist for over 20 years who regularly evaluates alpha-gal allergy patients, I completely disagree with the potential requirement to report alpha-gal allergy to the CDC or state registry. The reporting of medical conditions was started to prevent and control the spread of infectious diseases including poliomyelitis or later determining the source of foodborne illness outbreaks. This reporting was also extended to potential toxic or occupational sources of illnesses. Alpha-gal allergy is delayed reactivity to mammalian meat triggered in some people by tick bites. It is an allergy, not a communicable or infectious disease such as is Lyme disease. I agree that there is low awareness of alpha-gal allergy and more research is needed, but making it reportable is not the best approach. By the logic of the bill’s proponents, we should report every noninfectious disease where there is low awareness. We could also require bee sting or tree nut anaphylaxis to be reported. This would flood the CDC with additional disease reports and dilute the focus on infectious diseases. Reporting alpha-gal syndrome is unnecessary, unhelpful and a waste of public resources. Please do not pass this bill and allow the reporting system to focus on communicable and infectious diseases.
Comments Document
As a Director of the Alpha-gal Syndrome Awareness Campaign--a volunteer effort involving hundreds of people affected by alpha-gal syndrome, including Virginians--and creator of the Alpha-gal Information website--the most comprehensive resource on alpha-gal syndrome (AGS)-- I would like to register my strong support for HB 93. Passage of HB 93 would meet an urgent need for surveillance of alpha-gal syndrome (AGS), an emerging, tick-borne condition characterized by potentially life-threatening allergic reactions to a sugar found in mammals and products derived from mammals. The CDC reports that AGS is a growing clinical and public health concern, and state-level surveillance is a “critical need” to determine its true prevalence and trends in its expansion. This information is vital for public health decision-making. Importantly, passage of HB 93 would also serve as a mechanism to educate the scores of healthcare providers who remain unaware of AGS. Virginia is an AGS hotspot. Over 20% of residents in some areas of the state have the allergic antibodies (IgE) to alpha-gal associated with AGS, and up to 9% of these individuals may have full-blown AGS. A recent study found that more than 2% of a cohort from central Virginia had AGS. Other estimates suggest that up to 3% of people in the hardest hit areas may be affected. The CDC encourages states to report cases of AGS and has laid the groundwork for states to make AGS reporting mandatory. In September 2023 Arkansas became the first state to make AGS a mandatory, reportable health condition. Other states in high prevalence regions are expected to follow suit. By passing HB 93, you can make a lasting impact on the health and well-being of thousands of Virginians. This legislation presents a pathway to document the true prevalence of AGS and monitor its expansion, which is needed to facilitate and fund public health measures addressing this issue. Sincerely, Sharon Forsyth Alpha-gal Syndrome Awareness Campaign https://alphagalinformation.org/
I have Alpha-gal Syndrome. It's an allergy to mammal meats, products, and by-products. It can be life threatening, as reactions can present as anaphylaxis. Please pass HB 93 and make this tick-borne disease reportable to the CDC, so tracking of cases and it's spread can be evidenced. There is very little knowledge of this in the medical community, and resources and research are limited. By putting a quantitative spotlight on Alpha-gal Syndrome we have a better chance, as a state, to build valuable resources, advance medical knowledge, and unite agencies that should be working on this together to mitigate the spread and help those afflicted. Thank you