This project addresses an emerging need for communication among patient communities and health care payers regarding the introduction of novel therapies newly approved by the U.S. Food and Drug Administration (FDA)..
Dozens of new and novel therapies are likely to be approved every year for the foreseeable future. If past is prologue, some novel therapies will prompt concerns among payers regarding their cost and the depth of evidence supporting their adoption. Patient communities have a vital stake in payers’ evaluation and decision-making on these therapies, hence the emerging need for two-way communication among patients and payers.
With support from the Patient-Centered Outcomes Research Institute (PCORI), NEHI developed a statement of principles in consultation with a project advisory committee (four patient leaders and four payer thought leaders). The statement was presented to a July (2021) virtual conference of over fifty key opinion leaders from patient communities and payer organizations, and revised based on discussions at the conference and comments from participants submitted in the weeks following.
NEHI is pleased to present a finalized statement of principles as a result of our patient-payer conference. This material is meant to guide decision-making on coverage of innovative, potentially life-saving therapies.