Patients Rising

On behalf of the countless families we serve, Patients Rising extends heartfelt thanks to Senator Markwayne Mullin for his leadership in introducing S. 932, the Give Kids a Chance Act, which reauthorizes the Rare Pediatric Disease Priority Review Voucher Program. This essential program has been instrumental in advancing treatments for over 200,000 children across 39 rare diseases since its inception in 2012. With the PRV set to expire in December 2024, its renewal is critical to driving continued innovation and life-saving treatments for children facing rare, devastating diseases. We urge Congress to swiftly pass this vital legislation. Thank you, Senator Mullin, for standing with patients. Patients Rising is proud to support your efforts in any way we can.

Nebraska LB 168 seeks to codify protections for covered entities participating in the 340B Drug Pricing Program by restricting payer and manufacturer oversight. While positioned as a safeguard for patient access to discounted medications, the bill effectively shields hospitals and their contract pharmacies from accountability measures that would ensure the program’s integrity and alignment with its original intent. LB 168 omits any requirement for transparency on how 340B savings are allocated, nor does it mandate that participating hospitals provide a minimum threshold of charity care. In Nebraska, less than 1% of 340B hospital revenue is directed toward uncompensated care, and 68% of 340B contract pharmacies intended to serve low-income patients are located in affluent areas. The misalignment between the program’s mission and its execution is evident. Lawmakers must decide whether they’re more invested in protecting patients or preserving profits. Read more here: https://hubs.ly/Q03dBDCV0

North Dakota prides itself on resisting chain pharmacies, yet the 340B program is quietly feeding national chains through out-of-state networks. 340B was designed to provide discounted medications to rural and underserved hospitals in the state, but according to the Consumer Financial Protection Bureau, ND residents face an average $1,551 in medical debt per person, with $490 in collections. Read more about why Gov. Kelly Armstrong should VETO HB1473 ??

Join us in Washington, D.C., from June 9–11 for the annual We the Patients Fly-In, where advocates from across the country come together to speak with lawmakers and elevate the lived experiences of patients in healthcare conversations. We want to bring together those impacted by chronic and rare conditions, along with caregivers and allies who are passionate about ensuring that patients remain at the center of every healthcare decision. Your experience carries weight, and when you speak, policymakers listen differently. This is your chance to turn that advocacy into influence. Register here: https://hubs.ly/Q03dr0kk0

It’s a win for patients in Virginia as Gov. Glenn Youngkin has vetoed a bill that would have created a Prescription Drug Affordability Board in the state. While the bill was framed as a way to tackle high drug costs, PDABs have yet to show they actually work. The data just isn’t there. Maryland was the first state to roll out a PDAB, and five years later, despite millions in taxpayer funding and years of meetings, the board has delivered little to no measurable relief to patients. Gov. Youngkin had the foresight to reject a flawed proposal, and his decision reflects the need for solutions that deliver direct benefits to the patients and families shouldering the burden of rising healthcare costs.

For some families a single medication makes the difference between stability and crisis. Charles Conway is raising concerns about Virginia’s proposed Prescription Drug Affordability Board and what it could mean for his daughter Angelica, who lives with Prader-Willi Syndrome. Charles was recently a guest columnist for the Virginia Mercury, where he shared how Prescription Drug Affordability Board policies could limit access to the only approved treatment for his daughter’s condition. His message is clear — Lawmakers must consider the real-world consequences of well-meaning proposals: https://hubs.ly/Q03d8G6W0

Hospitals participating in the 340B program receive significant discounts on prescription drugs that intended to help financially vulnerable and uninsured patients. Yet, despite these savings, nonprofit hospitals dedicate only 2.3% of their revenue to charity care. So, where is the rest of the money going? Instead of using 340B funds to provide meaningful financial relief, many hospitals are padding their bottom lines while patients continue to struggle with medical debt. It’s time for accountability and transparency in how 340B savings are used???

A bill advancing in the New York Legislature would let wealthy corporations profit by taking advantage of a federal program meant to support financially vulnerable families. 340B was created to help these populations, but without accountability or transparency, hospitals are exploiting it to create an additional revenue stream. Terry Wilcox, co-founder and Chief Mission Officer of Patients Rising, wrote an op-ed in Empire report detailing how nonprofit medical facilities have gamed the system to maximize profits by charging patients full price for discounted drugs. Read it here: https://hubs.ly/Q03c-9Gr0

Colorado’s Prescription Drug Affordability Board was introduced with the promise of lowering medication costs, but at what price to taxpayers? With $2 million already spent, questions remain about whether this board is delivering real savings for patients or just adding another layer of bureaucracy?? https://lnkd.in/e_X6hRkH

Check this out — Here’s your chance to speak up and make an impact on drug pricing policies that could shape the future of healthcare affordability? Sign up at the link: https://hubs.ly/Q03clLRr0