As Congress tackles healthcare costs this week, several critical issues impacting patients and advocates are in focus. At Patients Rising, we are closely monitoring these developments. Additionally, we’re providing support and urging action on key legislative initiatives that directly affect patients’ access to affordable healthcare. Here’s what you need to know.

Senate Finance Committee Hearing on Healthcare Costs

This week, the Senate Finance Committee is hosting a hearing on the healthcare cost implications of the Inflation Reduction Act (IRA). As Congress tackles healthcare costs, we’ve submitted a statement to the committee. It emphasizes the need for legislative adjustments and strong Congressional oversight to ensure patient access to vital treatments.

Our key message is clear: While the IRA has potential benefits, they must be balanced with practical fixes to address unintended consequences.

Key Legislative Fixes We Urge You to Support

Patients Rising encourages support for several important legislative initiatives that can help mitigate patient harm. Specifically, we ask you to focus on the following:

• The Ensuring Pathways to Innovative Cures (EPIC) Act: This act aims to equalize the timeline for price negotiations for small molecule and biologic drugs, ensuring innovation is not stifled.
• The Optimizing Research Progress Hope and New Cures (ORPHAN Cures) Act: This legislation protects and incentivizes the development of treatments for rare diseases by maintaining critical funding and protections. Tell your member of congress to sign ORPHAN Cures! Take Action Here.
• The Protecting Health Care for All Patients Act: This act addresses concerns about potential discrimination in healthcare decision-making, ensuring equitable care for all.

Congressional Oversight and Accountability

As Congress tackles healthcare costs, oversight of the Medicare Drug Price Negotiation Program is crucial. Therefore, we are calling for improvements to protect patients. Here are the key areas we’re advocating for:

• Increased Transparency: Value assessment tools and negotiation processes need to be more transparent. As a result, this will build public trust.
• Patient-Centered Insights: The collection of patient perspectives must be strengthened. In doing so, we can ensure decisions reflect real-world patient needs.
• Protecting Patients: Importantly, we must guard against predatory formulary practices that restrict patient access to necessary treatments.
• Medicare Transaction Facilitator: Congress should ensure this role remains free from conflicts of interest. This is essential to maintain the integrity of negotiations.

Rare Pediatric Disease Priority Review Voucher Program

In addition to the Senate Finance Committee hearing, the House Energy and Commerce Committee is discussing the Rare Pediatric Disease Priority Review Voucher (PRV) program. We sent a letter urging support for the Creating Hope Reauthorization Act of 2024. This act will reauthorize this critical program. As Congress tackles healthcare costs, the program provides crucial incentives for rare pediatric disease treatments.

While we expect some amendments aimed at weakening the bill, our sources are cautiously optimistic these changes will not gain enough support within the committee.

Join Us at the Patients Rising Town Hall

Want to stay updated and get involved? Patients Rising will host a Town Hall on Federal Issues on September 26 at 7:00 PM ET. Join us to discuss these key legislative efforts and learn how you can make a difference. REGISTER HERE.

Your Advocacy Matters

Ultimately, Congress’s work this week could have a lasting impact on patient access to life-saving treatments. At Patients Rising, we rely on passionate advocates like you to stand with us and help drive the change patients need. By joining our community, you can stay informed, engage with other advocates, and take action to ensure every patient has access to the care they deserve. Your voice matters, and together, we can make a difference. Join us today and become a part of the movement to improve healthcare for all!

Stay informed and connected by following us on social media for real-time updates on these legislative efforts. Together, we can make a difference!