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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Dr. Robert Popovian, Chief Science Policy Officer for the Global Healthy Living Foundation, discusses the GLHF’s recent webinar on formulary exclusions; and a Forbes article outlines how two states are taking action to protect themselves against insurance policies that don’t make sense..
Global Healthy Living Foundation Webinar: Impact of Formulary Exclusions on Individual Patients
Forbes News Article: New TN & TX Price Transparency Laws Prevent Patients From Getting Ripped Off
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U.S. Representative Diana Harshbarger of Tennessee, discusses the importance of the Immediate Access for the Terminally Ill Act that she and Senator Mike Lee introduced last week; and Patients Rising CEO Terry Wilcox, gives her opinion on the bill.
Immediate Access for the Terminally Ill Act
Congresswoman Diana Harshbarger News Release: Congresswoman Diana Harshbarger, Senator Mike Lee (R-UT) Re-Introduce Immediate Access for the Terminally Ill Act
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Ilana Eisenstein, Chair of U.S. Litigation at DLA Piper, breaks down multiple lawsuits against the CMS drug price negotiations within the IRA; and a gene-editing treatment that could cure sickle cell disease awaits approval by the FDA.
Fierce Health News Article: The legal battle over drug price negotiations is just getting started
The Hill News Article: This gene-editing therapy could cure sickle cell disease, and it’s close to FDA approval
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Naomi Lopez, Founder of Nexus Policy Consulting, reacts to the recent White House executive order on Artificial Intelligence and tells us why it might hamper innovation; and the Jax Act is a bill we’ve been following all year and a Congressman just made a statement about the legislation.
Patients Rising Podcast Episode: AI - Good or Bad for Your Health?
Jax Act News Release: Jax Act Introduced in Congress – Recognition for Women Combat Veterans
Jax Act
Darrell Issa News Release: Issa – The JAX Act Corrects the Record for Hundreds of Women Who Served in Combat
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Dr. Bruce Altevogt, who served on the Board of Health Sciences Policy at the Institute of Medicine, discusses the impactfulness of CMS Listening Sessions; an article from The Wall Street Journal explains why many patients are paying more for the same drugs; and Congress is considering lifting a 13-year-old ban on physician-owned hospitals.
Centers for Medicare & Medicaid Services Webpage: Medicare Drug Price Negotiation Program Patient-Focused Listening Sessions
The Wall Street Journal News Article: Same Drug, Two Prices: Why the Higher Price Prevails
Healthcare Policy Pop Episode: Biosimilars' Slow Uptake
HealthLeaders Media News Article: Stakeholders Gird For Battle, As Congress Mulls Lifting Ban On Doc-Owned Hospitals
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Dr. Robert Popovian, Senior Visiting Health Policy Fellow at Pioneer Institute, tells us how Pioneer’s new 340B website will allow everyone to evaluate how well the 340B program is working; Senator Mike Braun discusses the Promising Pathway Act; and Patients Rising Now has joined a group of other patient advocacy organizations on a letter calling for strong, meaningful and accountable PBM reform this year.
Pioneer Institute Webinar: Pioneer Institute's 340B Website Demonstration
Pioneer Institute Webpage
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Jonathan Weiss, CEO of HealthEngine, reveals the challenges that companies face when breaking into the marketplace for healthcare services; Congresswoman Nanette Barragan and Terry Wilcox, CEO of Patients Rising, authored an OpEd in the Hill on legislation that expands access to Alzheimer’s treatment.
HealthEngine Webpage: Who We Are
HealthEngine Webpage: Jonathan Weiss
The Hill OpEd: Legislation expands access to breakthrough Alzheimer’s treatments
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Pam Andrews, Mother of Two Children with Niemann Pick Disease Type C1, discusses how The Promising Pathway Act could help her children with an approved treatment; and Senator Mike Braun delivered marks about The Promising Pathway Act to the Special Committee on Aging.
Promising Pathway Act
United States Senate Special Committee on Aging Webpage: Braun – Patients deserve a promising pathway at the FDA
The Firefly Fund Webpage
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MacKay Jimeson, Executive Director of the Patients Rising Patient Access and Affordability Project, tells us about their newly-released working paper called ”Prescription Drug Formularies Transparency and Reform.”; Ike Brannon, Senior Fellow at the Jack Kemp Foundation, explains why the CBO is looking for more research on obesity; and the FDA is authorizing more AI-enabled medical devices.
Patient Access and Affordability Project Webpage: Equitable Access – Examining Discriminatory & Restrictive Practices in Prescription Drug Formularies
Congressional Budget Office Webpage: A Call for New Research in the Area of Obesity
CATO Institute Webpage: The Costs of the New Weight Loss Hope Could Be Very High
STAT News Article: After a lull, the pace of FDA authorization of AI-enabled medical devices is rising
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Dr. Benson Hsu, Professor of Pediatrics at the University of South Dakota Sanford School of Medicine, discusses the ins and outs of the Kaiser Permanente Strike and tells us that while this strike is over there is still a lot of work to be done; and Patients Rising Now is releasing its latest report called ”Prescription Drug Formularies Transparency and Reform.”
NPR News Article: After historic strike, Kaiser Permanente workers win 21% raise over 4 years
University of South Dakota Webpage: Benson Hsu
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