Serving Up Justice 💼

On Wednesday morning, the House passed H.R. 485, the Protecting Care for All Patients Act, which bans the use of Quality-Adjusted Life Years (QALYs) in federal health programs. Bill Smith, a Senior Fellow at the Pioneer Institute, discusses what this means for patients and what the bill could mean for the future. Patients Rising has been pushing for a QALY ban for a long time and remains committed to working with all parties in the Senate to ensure all patients are valued equally in the eyes of the federal government. House Committee on Energy & Commerce Press Release: House Votes to Ban Metric Used to Deny Care for People with Disabilities and Chronic Illnesses  

Michael Riotto, a Patient Advocate and member of Patients Rising, tells us how the exciting developments with the QALY ban bill could affect him and his health if it moves forward. Riotto discusses how the QALY negatively affects him and others in similar situations and what it would mean if it were banned. Patients Rising has been pushing for a QALY ban for a long time and the possibility of this going to the House floor is a big step in the right direction. Patients Rising is also submitting a letter to Congress signed by patients from all 50 states advocating for the passage of this bill. Senate Committee on Rules Announcement: Announcement for H.R. 485 – Protecting Health Care for All Patients Act of 2023 Patients Rising Now Webpage: More Than 100 Patient Advocacy Organizations In Support H.R. 485 – The Protecting Healthcare for All Patients Act  

Joe Allen, Executive Director of the Bayh-Dole Coalition, discusses a proposed framework announced by the Biden administration that would allow march-in rights to be used when a company’s drug price is deemed unreasonable. Allen explains that the proposal is not how march-in rights were intended to be used and details why it is detrimental to American innovation.  Patients Rising was one of the first organizations to publicly come out against this proposal. Information on how to submit public comments can be found below. The deadline to submit comments is February 6, 2024. Request for Information Regarding the Draft Interagency Guidance Framework for Considering the Exercise of March-In Rights Patients Rising Now Statement: White House’s War on Patients Harms Sick Americans  

Dan Weinrieb, the Head of Strategic Partnerships at Jukebox Health, discusses aging at home and the federal policies that need to be improved in order to support it; and Stealth BioTherapeutics is considering giving up on getting full FDA approval of their therapy for Barth syndrome which would be detrimental to all who have the condition.  Jukebox Health Website STAT News Article: ‘We’ve exhausted all avenues’: A small biotech may give up on its ultra-rare disease drug over frustration with FDA  

Alan Gilbert, Vice President for Policy at Purchaser Business Group on Health, discusses whether CVS’s new pharmacy reimbursement model will provide transparency and decrease drug prices; and HHS has created regulations requiring more transparency on AI used in clinical settings. STAT News Article: CVS’s new drug payment plan won’t lower patients’ prices, experts warn CNN News Article: CVS will change the way it prices prescription drugs Politico News Article: HHS takes first stab at AI regs  

Kyle Zebley, Senior Vice President of Public Policy for the American Telemedicine Association, warns that the end of Telehealth care could be on the horizon. Learn why and what needs to be done to extend the life of Telehealth. Also, a revolutionary cure for sickle cell disease has been approved by the FDA. Patients Rising Podcast: Telehealth Extension American Telemedicine Association Website NBC News Article: FDA approves cure for sickle cell disease, the first treatment to use gene-editing tool CRISPR  

MacKay Jimeson, Executive Director of Patients Rising, breaks down the most recent announcement from the White House that they may begin using their “march-in” rights on patents to try to curb drug prices. Hear why Jimeson says this is a bad idea. Plus, a reversal on a decision from a large insurer that is actually good for patients.  NPR News Article: White House Proposes to 'March In' On Patents or Costly Drugs Politico Pulse News Article: Aetna Changes Telehealth Coverage  

Mark Roithmayr, CEO of the Alzheimer's Drug Discovery Foundation, talks about the breakthroughs being made in Alzheimer's treatments and shows how these developments are right on time; and CVS is making big changes to how they price prescriptions. Alzheimer's Drug Discovery Foundation CNN News Article: CVS will change the way it prices prescription drugs  

Robert Salim, attorney at law and patient, discusses his legal fight with insurance to cover his medically necessary cancer treatments; and the Arizona Attorney General is suing insulin manufacturers and PBMs for allegedly inflating the price of insulin and keeping excess profits. Patients Rising Podcast Episode: A Patient Fights His Insurance Company  ProPublica Article: Big Insurance Met Its Match When It Turned Down a Top Trial Lawyer’s Request for Cancer Treatment Press Release: Attorney General Mayes Sues Pharmacy Benefit Managers and Insulin Manufacturers Over Insulin Pricing Scheme

Terry Wilcox, Patients Rising CEO, along with Rick Chapman, the Chief Science Officer at the Innovation and Value Initiative, and Darius Lakdawalla, the Chief Scientific Officer at EntityRisk, hold a patient advocate event focused on the need to improve ICER; and the Patient Access and Affordability Project’s new report on discriminatory formulary practices. Healthcare Policy Pop Episode: Biosimilars Slow Uptake (GRACE Model) Patient Access and Affordability Project Report: Equitable Access: Examining Discriminatory & Restrictive Practices in Prescription Drug Formularies