A summit on amplifying voices of patients, caregivers, and people with disabilities in Inflation Reduction Act drug price negotiations

On September 18, 2023, Cancer Support Community convened patient and caregiver advocates, health care providers, policy experts, and health care innovators and thought leaders for a roundtable discussion on the need to ensure that patients, people with disabilities, and caregivers have a voice in defining "clinical benefit" for the purpose of Medicare Part D drug price negotiations and future health care policies that impact patients. The meeting featured presentations from Lara Strawbridge, Deputy Director for Policy at the Medicare Drug Rebate and Negotiations Group in the Center for Medicare, regulatory expert, Dr Monique Nolan, Counsel at Arnold and Porter, LLP, and 3 panel discussions: IRA Implementation-What Matters to Patients, a discussion of policies expected to impact patients and caregivers who are likely to rely heavily on high -cost drugs or biologics to treat cancer or other chronic illnesses, as well as the future development of novel therapies; The Science of Measuring Patient Experience, a discussion of current science of measuring patient experience and how it should be incorporated into the definition of clinical benefit; and Developing an Infrastructure for External Feedback, a discussion of actions and goals for patient engagement, advocacy opportunities, and how to best coordinate such efforts. This article represents an analysis of relevant resources as well as highlights from these sessions and subsequent discussions. It also outlines principles for engaging patient and provider advocacy organizations, whether in policy, media, or online discussions, surrounding the implementation of the Medicare Drug Price Negotiation Program.