The Foundation is a proud member of The Ensuring Access through Collaborative Health (EACH) and Patient Inclusion Council (PIC), otherwise known as EACH/PIC Coalition. It is a two-part coalition that unites patient organizations and allied groups (EACH), as well as patients and caregivers (PIC), to advocate for drug affordability policies that benefit patients.
This week we were honored to sign and support a letter to Congress from the EACH/PIC Coalition on price setting policies.
The important takeaway from what is being asked of Congress is that we want them to prioritize reforms rooted in patient experience and to:
- Hold Pharmacy Benefit Managers (PBM) Accountable
- Prohibit spread pricing and require full disclosure of reimbursement and rebates.
- Replace percentage-based PBM compensation with flat-fee service models.
- Ensure negotiated discounts and rebates are passed to patients.
- Require full transparency of PBM contracts, rebate flows, and formulary design.
- Cap and Smooth Patient Out-of-Pocket Costs
- Implement annual limits on patient prescription spending.
- Adopt payment-smoothing mechanisms to distribute costs evenly over the year.
- Expand and Protect Assistance Programs
- Preserve manufacturer copay assistance.
- Ban accumulator and maximizer programs that nullify patient aid.
- Strengthen federal assistance for low-income or under-insured patients.
- Create a centralized clearinghouse to help patients obtain financial support.
The request urges Congress to reject unproven or imported price-control schemes and focus instead on patient-centered affordability reforms that address real-world barriers to care. Policies grounded in patient experience, not government price ceilings, will deliver lasting relief and preserve access to innovation for future generations.
Prescription drug affordability for patients is a priority for the National Scleroderma Foundation, and we will keep our community informed on this topic. For more information about scleroderma advocacy, please contact advocacy@scleroderma.org. To learn more about the EACH/PIC Coalition, visit: https://eachpic.org/. View a digital version of the letter here.