Jennifer Riley, executive director of Pennsylvania Patients Come First, highlighted the challenges faced by parents of children with rare diseases in navigating the healthcare system and affording life-saving medications. Riley made this statement in an op-ed on March 11.
“I’ve experienced firsthand the uphill battle that parents of children with rare diseases endure,” said Riley, Pennsylvania Executive Director. “The search for knowledgeable, compassionate care can feel like an endless maze—isolating, exhausting, and filled with frustration. Every year on the last day of February, the global community recognizes Rare Disease Day.”
According to the op-ed, approximately 1.2 million Pennsylvanians are affected by rare diseases, with around 690,000 adults, or 7% of the state’s population, living with one. These conditions often entail high treatment costs and limited access to essential therapies, making affordability and availability of care critical concerns.
The Pennsylvania Rural Data Report indicates that rural communities in Pennsylvania face healthcare disparities, with 77% of rural counties classified as medically underserved. In 2023, Pennsylvania reported a physician-to-population ratio of 65 doctors per 100,000 residents in rural areas compared to 153 per 100,000 in urban regions. This shortage of healthcare providers limits access to essential medical services, including specialty care.
The Federal Trade Commission (FTC) found that three major pharmacy benefit managers (PBMs) control 80% of the U.S. prescription drug market. Their business practices, including rebate negotiations and formulary exclusions, have been linked to higher out-of-pocket costs for patients. In a report published in 2025, the FTC highlighted concerns over PBMs prioritizing profits over patient affordability.
A 2022 audit revealed that Pennsylvania taxpayers lost $7 million due to spread pricing practices by PBMs in Medicaid programs. The report criticized the Pennsylvania Department of Human Services (DHS) for lack of oversight, allowing PBMs to profit at the expense of public funds. Auditor General DeFoor called for legislative reforms to increase pricing transparency and accountability.
According to the Patients Come First website, Riley is a lifelong Pennsylvanian with over 20 years of experience in advocacy, public affairs, and strategic leadership. She has been recognized as one of Pennsylvania’s most influential women for her contributions to business, public service, media, and nonprofits.
