Elevating Patient Voices in Ultra Rare Disease: Navigating ICER Reviews
A new webinar aimed at empowering advocates and patients to engage in the Institute for Clinical and Economic Review (ICER) value assessment review process
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.
The Latest Insights
Equitable Access: Examining Discriminatory & Restrictive Practices in Prescription Drug Formularies
Executive Summary (Full Report - PDF) Modern formularies initially emerged in the 1980s and 1990s as tools for managing prescription drug costs within healthcare institutions. However, significant changes occurred after the passage of the Affordable Care Act (ACA) in...
Patient Group Releases Special Report: CMS vs FDA: How Medicare and Medicaid Coverage Decisions Limit Patient Access
New report analyzes the patient impact of growing coverage restrictions for FDA accelerated approval treatments. WASHINGTON — Patients Rising, a non-profit organization that champions patients with chronic and rare diseases, today released a special report titled CMS...
PRESS RELEASE: Patients Rising Calls on CMS to Engage with Patients in Drug Price Negotiations
Patients Rising, a non-profit organization advocating on behalf of patients with chronic and rare diseases, today released Principles for CMS on Harnessing the Power of Patient Involvement When Implementing the Inflation Reduction Act.
Supreme Court Passes on Skinny Labeling Case: What Does This Mean for Patients?
In mid-May, the U.S. Supreme Court opted not to take up a patent-infringement case between two pharmaceutical companies – Teva and GlaxoSmithKline (GSK). While it largely went unnoticed among those who are not patent lawyers, IP nerds, or drug companies, the decision’s ripple effects could have a negative impact for patients across the country looking to get access to newer, better treatments.
FROM OUR ADVISORY BOARD: Are We On the Cusp of a New Drug Pricing Paradigm?
We may be on the verge of a titanic shift in how drug prices are set. It’s been led by a dramatic decline in insulin prices, but it’s spreading to other brand drugs as well. This new paradigm is the unintended but welcome result of legislative, regulatory, and market pressures exerted on the biopharmaceutical industry.
OP-ED: Promising New Alzheimer’s Drug Calls for CMS to Rethink Access Restrictions .
Some of the most exciting advances in science and medicine are happening in Alzheimer’s, a disease that is one of the greatest epidemics of this generation. Eli Lilly announced promising results last week for experimental amyloid-targeting drug donanemab. These clinical trial results showed that the drug can slow cognitive and functional decline for people with early-stage Alzheimer’s disease.
Group Purchasing Organizations Impact Access to Medications, Increase Drug Shortages
Drug shortages can be a matter of life and death. Sometimes, a shortage may simply require patients to temporarily pay a higher price or shop around to different local pharmacies to find one that has their prescription in stock. But, in the worst cases, a shortage means patients are entirely unable get access to a potentially lifesaving drug at any price.
State and Federal Governments Continue to Challenge PBM Business Model
Ohio the latest state to legally challenge the business model of Pharmacy Benefit Mangers (PBMs). Last month, the state’s attorney general filed a landmark lawsuit alleging that Express Scripts and Prime Therapeutics – two of the country’s largest PBMs – illegally...
OP-ED: The Cold War at HHS
by MacKay Jimeson There is an interagency cold war between the Food and Drug Administration and the Centers for Medicare and Medicaid Services at the Department of Health and Human Services. FDA wants to approve promising treatments for patients faster. CMS...
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...
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