Why the PDAB bill deserves Gov. Youngkin's veto
As a father, I am deeply concerned about my daughter Angelica's future if Virginia enacts HB 1724, a bill that would create a Prescription Drug Affordability Board to set limits on the costs of certain medications. Angelica has Prader-Willi Syndrome (PWS), a rare genetic disorder that impacts her growth, hunger, and overall development. Managing her condition requires access to specialized medications, including growth hormone — the only approved treatment for PWS. If Virginia's Prescription Drug Affordability Board (PDAB) sets upper payment limits on newer therapies, it could make it harder for families like mine to access life-changing treatments, creating barriers to care rather than improving affordability.
My wife and I were thrilled to be expecting after three years of marriage. Early genetic testing at 20 weeks revealed that our daughter had PWS, a devastating diagnosis. At birth, she had low muscle tone, couldn't eat on her own and barely cried. After 21 days in the NICU, she came home requiring constant monitoring. She has since been diagnosed with Autism and Scoliosis and relies on daily therapies to progress.
Despite her challenges, my daughter has made remarkable strides. She can now walk, run, jump, kick a ball, talk and eat independently. However, she still struggles with routine changes and is beginning to show an increased interest in food — a potential sign of hyperphagia, the relentless hunger that is the hallmark of PWS. Without access to growth hormone and other specialized medications, her quality of life and future independence could be in jeopardy.
Another major concern with HB 1724 is the potential use of Quality-Adjusted Life Years (QALYs) in determining drug value. QALYs assign a numerical value to a person's life based on their health status, often disadvantageous to individuals with disabilities or chronic conditions by devaluing treatments that improve their quality of life rather than curing their condition. If the PDAB relies on QALYs to set upper payment limits, rare disease patients like my daughter could face significant barriers to accessing essential medications.
History shows that PDABs fail to deliver on their promises. In 2019, Maryland passed a PDAB, yet it has not saved a single patient any money. If this model hasn't worked there, why would we expect it to work in Virginia? Instead of reducing costs, price controls create uncertainty in the drug supply and discourage innovation. HB 1724 does nothing to address the root causes of high drug prices and could leave some of the most vulnerable Virginians without the medications they need to survive.
There are better solutions for Virginians. Instead of imposing price caps that could drive critical drugs out of Virginia, lawmakers should focus on policies that protect access to life-saving medications while also addressing affordability concerns.
I urge Gov. Youngkin to once again veto the PDAB legislation. My daughter's life — and the lives of many others with rare diseases — depend on it. Virginia families should not have to worry about whether their loved ones will have access to the medications they need to thrive.
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