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Patient perspectives are vital to inform health policy. One agency where such input is particularly crucial is the Centers for Medicare and Medicaid Services (CMS), a federal agency that, among other mandates, provides health coverage for more than 160 million Americans.
Rash CMS policy can have a profound and lasting negative impact on innovative medicine development and access in the U.S., making patient input crucial. For instance, CMS recently announced the 2025 selection of 15 drugs covered under Medicare Part D for price setting “negotiations” under the Inflation Reduction Act (IRA). The “negotiations” impose caps on the price that Medicare will reimburse for medications in many therapeutic areas, from diabetes and cancer to asthma, arthritis, and more—jeopardizing future medical innovation patients are so desperately awaiting.
Patients, caregivers, and other stakeholders originally had until March 12 to register to participate in patient-focused roundtables, but the agency recently extended the deadline through March 19. In anticipation of the fast-approaching deadline, the Biotechnology Innovation Organization (BIO) invited four patient advocacy groups as part of the February Patient Advocacy Coffee Chat to discuss why the patient perspective is so important to CMS, how patients can effectively engage with the agency, and the unintended consequences of the negotiation process that patient groups are working to mitigate. The four patient advocacy leaders who spoke at the February coffee chat continue to work with the patient community towards effective CMS engagement – they are by no means the only ones.
In fact, the patient advocacy community has been instrumental in developing tools to support patient engagement across many government offices and programs. To help patient groups more easily connect with ongoing efforts, identify successful strategies, and leverage shared learnings, Bio.News will be welcoming a series of guest contributors who will discuss programs their organizations are leading.
Guest contributor: Raymond Puerini, Director, Faster Cures
The Milken Institute’s FasterCures is a nonprofit, non-partisan think tank focused on building a system that is effective, efficient, and driven by a clear vision: patient needs above all else.
How FasterCures is strengthening the ability of patient foundations, non-profit organizations, and patients to engage in full partnership.
FasterCures is dedicated to saving lives by accelerating scientific advancements to all patients. Since FasterCures’ inception in 2003, the organization has emphasized the importance of putting patients at the center of the biomedical research system and producing resources to advance the science of patient input in biomedical research. The capacity-building programs seek to strengthen the ability of patient foundations and nonprofit organizations to support, advance, or conduct research that can lead to new therapies for patient communities.
For the last 15 years, the organization advanced patient engagement in biomedical research by uniting diverse stakeholders to identify gaps and develop solutions and resources. Though considerable progress has been made in integrating patient perspectives into the spectrum of R&D activities, the progress of this advancement and the clarity of the opportunities by which patients and patient organizations can meaningfully engage and contribute their experiences, perspectives, and preferences, is not uniform across the R&D lifecycle.
Why FasterCures prioritizes patient engagement at CMS.
CMS is the bellwether to which other payers and value assessors look for guidance and leadership. Patient organizations can play a critical role in facilitating patient engagement efforts by leveraging the collective experiences, data, insights, and perspectives of their patient communities to inform R&D activities and decisions. CMS is a highly complex agency, with many different centers and offices governing highly technical and complex programs, and with various types of opportunities for patients to engage to inform center activities and decisions. This complexity can present challenges for patient organizations hoping to engage with CMS to ensure that their patient communities have access to life-saving therapies and services.
FasterCures’ Vital Voices Workshop: Empowering patient groups to effectively engage CMS.
As a result, FasterCures is pursuing work this year to help build the capacity of patient organizations to engage CMS, by providing education and resources, in the form of workshops, a webinar series, and a toolkit, all aimed at providing research-focused patient organizations with information about where there are opportunities for patients to engage with CMS and providing insights from experts and those with experience engaging with CMS about possible strategies to maximize impact and effectiveness of engagement efforts.
The first of these activities is a workshop open to all research-focused patient organizations occurring in Washington DC on April 28. To learn more and register, visit this website or contact TRAIN@milkeninstitute.org at FasterCures.
