Virginia Veteran with Daughter Who Has Rare Disease Requiring Expensive Medication: Youngkin Should “choose hardworking Virginia families and sign the Prescription Drug Affordability Board bill into law.”

by Hermionne G. Johnson, MSN RN, BSc. – serves on the CHKD Parent Advisory Council, as a clinical education specialist, and as an adjunct professor at Bryant and Stratton College. She co-founded Ayana’s Hope Cells and serves as its Chief Executive Officer. She also serves as Vice-Chairwoman of the Virginia Rare Disease Council. 

For an insured dual-income, dual-military family, managing the costs of raising a child with a rare disease and chronic comorbidities reveals the harsh reality of prescription drug pricing. Despite having health insurance, the out-of-pocket costs our family faces for maintenance medications necessary to sustain our child’s health remain a significant financial burden.

This is not merely an inconvenience—it is a persistent stressor. As a family, you must make sacrifices to ensure your child has access to the life-saving medications they need. After serving in two branches, I separated from the military to care for my daughter, Ayana, and eventually, my husband retired from service. The current system places undue pressure on families like ours, who are already serving their country, and it has forced us to navigate impossible financial choices to prioritize our child’s health.

Virginians are facing a crisis. With incredible uncertainty at the federal level and rising prices across the economy, hardworking families are looking for lasting relief. As hardworking families struggle to afford food, rent and life-saving medicine, pharmaceutical companies are seeing record profits.

The pharmaceutical industry has a massive lobbying presence in Virginia. According to a report from the Richmond-Times Dispatch, the pharmaceutical industry doubled its lobbying investment from 2023, spending over $400,000 in 2024. Big Pharma is spending that money to keep medicine expensive for Virginians.

A Prescription Drug Affordability Board (PDAB) would bring much-needed relief to families in this position. By evaluating medication prices and ensuring equitable access, the board could alleviate the financial strain on households trying to provide critical care for their loved ones.

The board would comprise health care and industry experts appointed by the House, Senate and governor. Up to 12 drugs a year would be considered for price review, and the board would consider a broad range of factors and use proven data-based strategies to determine an upper payment limit on a drug if the medicine is proven to be unreasonably expensive. Pharmaceutical companies and other industry partners can make their case before the board to help determine the cost burden to consumers.

For our family and countless others, a PDAB offers the promise of stability and fairness. It is a way to honor the contributions and sacrifices of military families while ensuring that no parent has to choose between financial security and their child’s health. Families across the nation deserve a healthcare system where life-saving medications are a right, not an unmanageable burden.

We must put people over profits and lower the cost of medicine for Virginians by establishing a Prescription Drug Affordability Board. Governor Youngkin can set an example for the future and make Virginia a leader in affordability. I urge the governor to choose hardworking Virginia families and sign the Prescription Drug Affordability Board bill into law.