Trust, transparency, affordability: engaging patients for fair IRA drug pricing

Designing the drug price negotiation program for and with patients

The IRA represents a potentially significant step towards making health care more affordable and accessible for all Americans. A key component of the IRA is the DPNP, which allows the federal government to negotiate prices for certain drugs with the highest total spending covered under Medicare. While the ultimate impact of the DPNP remains to be seen, it is clear that the program will profoundly affect healthcare markets in the US.

To ensure that the DPNP effectively reduces drug costs, the program must be aligned with patients’ needs, preferences, and priorities. This requires meaningful engagement with patients and caregivers throughout the program’s development and implementation.

The Centers for Medicare and Medicaid Services (CMS) has many questions to consider to ensure the DPNP is designed effectively. These include:

• What challenges might marginalized patients and caregivers face in CMS engagement activities?
• Were patient perspectives considered in comparative effectiveness studies during negotiations?
• How will gaps in evidence be addressed?
• How might the negotiation process impact existing health inequalities?
• Are there potential consequences for marginalized populations in Medicaid and other federal health programs due to DPNP program negotiations?

In late August 2023, CMS published its first list of drugs to be negotiated. The agency also has conducted ten public listening sessions to gather feedback from patients and caregivers regarding their experiences with various disease conditions addressed by the first ten drugs identified for drug pricing negotiations. These sessions reflect meaningful commitment to promoting health equity and patient engagement; however, more must be done to ensure that the voices of marginalized and often overlooked communities are heard.

Fostering inclusive healthcare decision-making

As decision-makers and advocates, we must give these communities a platform to share their perspectives. This includes actively seeking out input from individuals from diverse backgrounds, ensuring that communication materials are accessible to all, and providing multiple channels for feedback.

CMS should engage patients beyond listening sessions. It should partner with community-based organizations and health centers, and use focus groups, surveys, and straightforward feedback channels to reach marginalized communities. Additionally, consistent with its strategic plan, CMS should ensure that DPNP implementation incorporates its Framework for Health Equity by prioritizing equity throughout the process.

As researchers, we strive to involve patients and caregivers as co-authors in our projects and communications. We also make it a point to inform research participants about our findings and how our collaborations have affected our studies. We ensure our partners understand their feedback is valuable, not just for show. We urge CMS to explore ways to inform patients about how their involvement has influenced the development and execution of the DPNP.

As nonprofit organization leaders dedicated to incorporating patient perspectives at the center of defining value in health care, we recognize the importance of preventing policies from inadvertently hindering patient access to care. Therefore, it is crucial to involve patients and caregivers meaningfully in the policymaking process from the beginning rather than as an afterthought. How this engagement is conducted, the individuals engaged, and the degree to which patients can influence decisions are all vital aspects of developing genuine engagement.