PRESS RELEASE: Patients Rising Announces Advisory Board for Patient Access & Affordability Project

Leading experts in public policy, economics, and science will focus on the rare and chronic disease plight before lawmakers, regulators and insurers. WASHINGTON — Patients Rising, a non-profit organization advocating on behalf of patients with chronic and rare...

The Alzheimer’s Dilemma: Government and Private Payers Must Evolve or Die

By MacKay Jimeson In a proclamation last year, President Joe Biden said, “in the next 30 years, the number of Americans with Alzheimer’s is expected to reach nearly 14 million, straining families and our health care system. Fortunately, we are on the cusp of...

This Rare Disease Day we need to go beyond raising awareness and move towards tangible policy and regulatory action.

By MacKay Jimeson Too many patients and families are in crisis as we mark another Rare Disease Day. Policymakers are focused on debates on Accelerated Approval and drug pricing, while many patients are without treatment due to regulatory or insurance coverage...

 Making effective decisions in health care requires a thorough understanding of the patient perspective, as well as robust, precise measures of response to therapy. The Patient Access & Affordability Project evaluates the various frameworks used to assess and demonstrate the value of new treatments to ensure that the patient is kept at the center of health care decisions.

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