Healthcare Policy Pop

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  

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  

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  

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  

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  

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  

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  

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  

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  

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  

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

Wayne Winegarden, Senior Fellow at the Pacific Research Institute, discusses the news that AbbVie still controls more than 97 percent of the market nearly a year after Humira biosimilars launched; Darius Lakdawalla, Co-Author of the GRACE Model and Director of Research at the Schaeffer Center for Health Policy and Economics at the University of Southern California, describes how his model is different from what we currently use; and Patients Rising Now is working on its latest report about Formulary Practices. Endpoints News Article: Almost a year since Humira biosimilars launched, AbbVie still controls more than 97% of the US market Pacific Research Institute Webpage The GRACE Model  

George Huntley, CEO of the Diabetes Leadership Council, explains a major victory for patients in a court case regarding Copay Accumulator practices; Cigna has agreed to pay $172 million dollars after allegations the submitted false diagnostic codes to boost reimbursements; and the unions that represent 85 thousand health care workers have reached a tentative agreement with Kaiser Permanente after a strike over wages and staffing. Diabetes Leadership Council Webpage Fierce Healthcare News Article: Court strikes down Trump-era rule that allowed insurers to not count copay assistance Fierce Healthcare News Article: Cigna to pay $172M to settle claims it overcharged Medicare Advantage program U.S. Department of Justice Office of Public Affairs Press Release: Cigna Group to Pay $172 Million to Resolve False Claims Act Allegations AP News Article: Kaiser Permanente reaches a tentative deal with health care worker unions after a recent strike  

Kirsten Axelsen, Senior Policy Advisor with global law firm DLA Piper, explains what Coverage with Evidence Development is and how it restricts patients access; the manufacturers of all 10 of the first drugs announced for Medicare drug negotiation have agreed to negotiate, but it's not that simple; and a new study published in Annals of Internal Medicine says that discount card programs could save people money on out-of-pocket drug costs. DLA Piper Webpage: Kirsten Axelsen NPR News Article: All in – Drugmakers say yes, they'll negotiate with Medicare on price, so reluctantly JAMA Network News Article: Discount Cards Could Save Patients Millions on Drug Costs  

AI has impacted healthcare and where the technology might take us; Brad O'Neil, President and Managing Director of the ICHRA Shop, explains how an Individual Coverage Health Reimbursement Arrangement (ICHRA) works and what it offers to employers and employees; the FDA reopens the comment period on its paper about the use of AI in drug development; and a Kaiser Health News article examines new federal rules for Medicare Advantage plans that take effect in January. The Data Economics Company Webpage The ICHRA Shop Webpage Endpoints News Article: Agency reopens AI discussion paper for comments amid two-day workshop Kaiser Health News Article: Feds Rein In Use of Predictive Software That Limits Care for Medicare Advantage Patients  

John O'Brien, President and CEO of the National Pharmaceutical Council, weighs in on ICER's latest update that we are calling a “faux update”; The American Enterprise Institute has released its perspective on last year's Inflation Reduction Act; and The National Institute on Minority Health and Health Disparities has officially designated people with disabilities as a population with health disparities. National Pharmaceutical Council Webpage: NPC Evaluates ICER's Revised 2023 Value Assessment Framework American Enterprise Institute Webpage: What Does the Inflation Reduction Act Mean for Patients and Physicians? National Institutes of Health Webpage: NIH designates people with disabilities as a population with health disparities  

Jonathan Weiss, Founder and CEO of HealthEngine, discusses why The No Surprise Act so far isn't serving its intended purpose; a new secret shopper study found that hospitals are failing at price transparency for imaging services; and if you want to keep up with the financial penalties levied since the implementation of the No Surprises Act there's a list from CMS. HealthEngine Webpage Journal of the American Medical Association Article: Health Care Transparency—What You See Should Be What You Get Radiology Business News Article: ‘Secret shopper' study co-authored by Mark Cuban finds hospitals failing at imaging price transparency CMS Webpage: Hospital Price Transparency Enforcement Actions  

Bill Smith, Director of the Life Sciences Initiative at the Pioneer Institute, dives into the so-called update to ICER's value assessment framework; Congresswoman Cathy McMorris Rodgers explained earlier this year why she was against the QALY measurement; and Patients Rising Now along with several other groups have issued statements denouncing the ICER update. Pioneer Institute Webpage Patients Rising Podcast Episode: Healthcare Protections for Rare Diseases with Rep. Cathy McMorris Rodgers Patients Rising Now Webpage: Patients Rising Now Statement – ICER's ‘Updates' are Thinly Veiled Strategy to Continue Discriminatory Tactics National Pharmaceutical Council Webpage: NPC Evaluates ICER's Revised 2023 Value Assessment Framework – A Missed Opportunity for Patients and the Field Biotechnology Innovation Organization Webpage: ICER's updated treatment assessment still ignores patient concerns  

Kirsten Axelsen, Senior Policy Advisor at DLA Piper, says some of the fallout from CMS announcing price controls is already happening; the E&C Oversight and Investigations Subcommittee held a hearing on the IRA's price-setting; and Patients Rising Now reacted with a statement on the hearing.  DLA Piper Webpage: Kirsten Axelsen E&C Subcommittee Hearing: At What Cost – Oversight of How the IRA's Price Setting Scheme Means Fewer Cures for Patients Patients Rising Now News Release: Patients Rising Now Issues Statement on E&C IRA Hearing  

Gavin Clingham, Public Policy Director for the Alliance for Patient Access, discusses reasons behind drug supply shortages and some possible solutions; Patients Rising Now submitted questions to the E&C Oversight and Investigations Subcommittee pertaining to the IRA's drug price setting; and CMS will host listening sessions for the first 10 drugs named for price setting, but Patients Rising Now says more needs to be done. Alliance for Patient Access E&C Oversight and Investigations Subcommittee Hearing: "At What Cost: Oversight of How the IRA's Price Setting Scheme Means Fewer Cures for Patients" CMS Webpage: Medicare Drug Price Negotiation Program Patient-Focused Listening Sessions  

Peter Kolchinsky, Managing Partner at RA Capital Management, breaks down a new white paper with Entity rRisk that aims to get the math correct when measuring the value of new medicines; a new report says the HHS Office for Civil Rights wants an update to a 50-year-old law to prevent disability-based discrimination; and Patients Rising Now is supporting The Protecting Health Care for All Patients Act. RA Capital Management U.S. Department of Health and Human Services Webpage: HHS Issues New Proposed Rule to Strengthen Prohibitions Against Discrimination on the Basis of a Disability in Health Care and Human Services Programs Congressional Budget Office Webpage: H.R. 485, Protecting Health Care for All Patients Act of 2023  

Joseph Hammang, Ph.D., Partner at Vital Transformation Healthcare Consultancy, says some of the backlash against accelerated approval comes from those not informed on the process; Hammang also says impacts from the Inflation Reduction Act have some investors wary; and The Wall Street Journal has a new article stating generic drugs should be cheaper, but insurers are charging thousands of dollars for them. Vital Transformation Webpage The Wall Street Journal News Article: Generic Drugs Should Be Cheap, but Insurers Are Charging Thousands of Dollars for Them  

John Stanford with Incubate explains how the Inflation Reduction Act has already begun to deter investments in drug research and development; Patients Rising issues a statement calling for progress on several key healthcare issues, including PBMs; and a new white paper from Sen. Bill Cassidy looks at the impacts of AI on healthcare, including patient privacy.  Incubate Webpage Axios: Drugmakers, investors say they've already changed bets in IRA's first year Patients Rising Now Webpage: Patients Rising Now Issues ‘Must Pass for Patients' List for Congress Ranking Member Cassidy Releases White Paper on Artificial Intelligence Listen: AI Privacy Concerns + Accelerated Approval Benefits  

In the wake of Medicare's announcement of the first 10 drugs subject to price negotiations, Patients Rising CEO Terry Wilcox outlines the need for greater patient involvement in this process; Taylor Schwartz of Avalere explains a new white paper that analyzes the use of patient-centered outcomes in ICER reviews; CMS issues draft guidance on new Medicare Part D smoothing program. Patients Rising Calls on CMS to Engage with Patients in Drug Price Negotiations Patients Rising Now Comments: Medicare Drug Price Negotiation Program Guidance Memo CMS Webpage: Medicare Drug Price Negotiation Program Avalere Webpage: Use of Patient-Centered Outcomes in ICER Assessments

Avalere releases a study focused on ICER assessments and whether or not they take into account the patient experience when creating their reports; Wayne Winegarden, a Senior Fellow with the Pacific Research Institute explains how new Humira biosimilars have affected the market and their possible effect on PBMs; and drug shortages are worsening, and this time they're affecting diabetes medications. Avalere Webpage: Use of Patient-Centered Outcomes in ICER Assessments Patients Rising Now Comments Fierce Pharma News Article: Eli Lilly's Mounjaro shortage worsens ahead of potential obesity FDA approval  

MacKay Jimeson, Acting Executive Director of Patients Rising Now, wants lawmakers to stand behind the accelerated approval program; Jody Quinn, a patient from Massachusetts' 13th congressional district who lives with psoriatic disease, says  prior authorization led to long-term joint damage after her treatment was denied three times; and the Patients Rising community will observe the 33rd anniversary of the Americans with Disabilities Act on July 26th. Patients Rising Now Report: The Value of Accelerated Approval for Patient Access & Future Medical Advances Bloomberg Law News Article: Alzheimer's Drug Approval Fuels Debate on Medicare's Decisions House Committee on Energy & Commerce Meeting Health Leaders News Article: Most Patients Experiencee Barriers to Care from Insurers ADA Anniversary  

MacKay Jimeson, Acting Executive Director of Patients Rising Now, previews Monday's accelerated approval hill briefing, which is open for staff to attend; Mel Mann, the longest-living Gleevec patient, discusses how accelerated approval saved his life and will speak at Monday's hill briefing. Sign Up: The Value of Accelerated Approval for Patient Access & Medical Advances House Energy and Commerce Committee: Chair Rodgers Opening Statement on Spurring Lifesaving Medical Innovation The Mel Mann Story: From Terminal Cancer to 28 Year Survivor (Long Version) Patients Rising Podcast  

Bill Smith, Senior Fellow at the Pioneer Institute, explains a ruling from the Supreme Court regarding the 340B program; Patients Rising Now's briefing on Accelerated Approval will be held Monday, July 24th; Ted Okon, Executive Director of the Community Oncology Alliance, updates us on where we're at with the cancer drug shortage and gives policy solutions; the Senate Finance Committee has announced the July 26th markup of their PBM proposal; and the House Energy and Commerce Committee is urging CMS to provide transparency to patients in the coverage determination process.  Register for Briefing: The Value of Accelerated Approval for Patient Access & Future Medical Advances Pioneer Institute Webinar: The Patient Cost of Copay Accumulator & Maximizer Programs Senate Finance Committee News Release: Wyden, Crapo Announce Finance Markup of Pharmacy Benefit Manager Proposals Energy and Commerce Committee News Release: Chairs Rodgers, Smith Lead Members in Urging CMS to Provide Transparency to Patients in Coverage Determination Process  

Brett Meeks, Executive Director of the Health Innovation Alliance, is working to make sure everyone gets on the same page on the issue of health privacy and AI; The Pioneer Institute on Public Policy Research will host a webinar next week; Patients Rising Now will host a briefing on Accelerated Approval on Monday, July 24th; and Ivy Elkins, a patient advocate from Illinois' 9th Congressional District, says she wouldn't be alive without accelerated approval. Register for Briefing: The Value of Accelerated Approval for Patient Access & Future Medical Advances Health Innovation Alliance U.S. Senate Committee on Judiciary Hearing: Artificial Intelligence and Intellectual Property Pioneer Institute Briefing: The Patient Cost of Copay Accumulator & Maximizer Programs Patients Rising Stories  

Sue Peschin, President and CEO of the Alliance for Aging Research, says Medicare coverage for Alzheimer's drugs is something millions across the country truly care about as an election year nears; the Biden Administration is taking action to limit insurance “junk fees” for patients; Patients Rising Now will host a Hill briefing on Accelerated Approval on Monday, July 24th; and Sarah Ikenberry, Senior Communication Advisor for the Office of Therapeutic Biologics and Biosimilars at the FDA, discusses the biosimilar landscape as new Humira biosimilars hit the market. Alliance for Aging Research Poll: Huge Majorities Want Medicare to Cover Cost of Alzheimer's Drugs Register: The Value of Accelerated Approval for Patient Access & Future Medical Advances Event FDA Webpage: Biosimilars Real Clear Markets OpEd: Promising New Alzheimer's Drug Calls for CMS to Rethink Access Restrictions

Joanne Cunningham, CEO of the Partnership for Quality Home Healthcare, discusses the robust support for home health even as CMS aims to cut funding; Jeffrey Oldham, Director of State Government Relations and Advocacy for the Rare Access Action Project, explains how his group is working to expand access and coverage for patients with rare disease; the Patients Rising's Patient Access and Affordability Project will host a Hill briefing on accelerated approval on Monday, July 24th; and Patients Rising Now has submitted comments to the FDA on its incorporation of patient experience data when making decisions on new drugs. Partnership for Quality Home Healthcare Webpage Rare Access Action Project Webpage The Value of Accelerated Approval for Patient Access & Future Medical Advances Event  

Dr. Marion Mass, a pediatrician, has seen up close and personal what supply chain shortages can do; a news article from Oncology Business Review says that the proportion of oral cancer drugs that needed prior authorization increased from 53 percent to 96 percent between 2010 and 2019; Diane Talbert, patient correspondent from MD-05, discusses the devastating effects of prior authorization; and Ella Balasa, a cystic fibrosis patient advocate, tells us the importance of the PASTEUR Act being reintroduced. Healthcare Policy Pop Episode: Crises in Drug Shortages + Medical Supplies Frank Pallone Jr. News Release: Pallone Calls on E&C Republican Leaders to Address National Shortages Crisis as Part of PAHPA Reauthorization Oncology Business Review News Article: Cancer Drugs Needing Prior Authorization Almost Doubled, Lives at Risk Patients Rising Stories PASTEUR Act  

Ronda Miller-Ernest, a Pediatric Nurse Practitioner for more than 30 years, discusses the importance of RSV vaccines and the Vaccines for Children Program in the wake of an ACIP meeting; the FDA has opened up its public comment period for guidance regarding how to incorporate patient experiences into the drug development and regulatory review process; Jodie Solari, Communications Lead for the Galactosemia Foundation, explains a clinical trial took place where the drug did not meet all of the FDA's established markers, but the improvements to families should not be ignored; and the FDA and several other agencies are some of the few recipients of increased funding thanks to a new bill from the Senate Committee on Appropriations. Patients Rising Podcast Webpage: The Fight Against RSV Revs Up CDC Webpage: ACIP Presentation Slides – June 21-23, 2023 Meeting CDC Webpage: Vaccines for Children Program FDA Comment Period Webpage Galactosemia Foundation Webpage

Anne Cassity, Senior Vice President of Government Affairs at the National Community Pharmacists Association, says community pharmacists are concerned about several PBM tactics that make delivering care more costly to them and the patients; several bills that address PBM tactics have been introduced in the Senate and House; Amy Gietzen, co-founder of “Waiting Room Entertainment” from New York's 26th district, explains what her organization aims to do for other patients like her; and patients are watching the increase of prescription drug affordability boards in state legislatures across the country.  Senate Finance PBM Bill Waiting Room Entertainment Pagosa Daily Post News Article: Colorado Panel Will Decide Which Medicine to Make Affordable  

Terry Wilcox, CEO of Patients Rising Now, outlines the top priorities for this year's We the Patients Fly-In, including PBM reform; and Dorothea Lantz, a caregiver from Florida's 27th Congressional District, says its important for lawmakers to listen to people who live with healthcare policy issues every day because they know the intricacies of what they deal with. Patients Rising Now Webpage  

Michael Riotto, a patient advocate from PA-01, says the QALY is top of mind for him as he attends the 2023 Patients Rising Now ‘We The Patients' Fly-In; Tomiyo Williams, a patient advocate from GA-6, shares how step therapy policies hurt her daughter's care. Patients will also be talking about the Dental and Optometric Care Access Act at the Fly-In; and Patients Rising awards eleven companies with its annual “Health Plan Hero” distinction, which recognizes companies with stellar health plans.  Patients Rising Now Webpage: We The Patients Fly-In U.S. Representatives News Release: Carter, Clarke, Sessions introduce bill to Ensure Access to Quality Dental and Optometric Care Patients Rising Podcast Webpage: Better Care, Lower Costs Video: Stop Vision Benefit Manager Abuses Michael Riotto's Story

The Patient Access and Affordability Project, a program of Patients Rising, releases principles for CMS to harness the power of patients as the agency implements the Inflation Reduction Act; CMS is foregoing some of the normal requirements for adequate public comment and review times; Patients Rising Now submitted a letter of support for Bill S0799 in Rhode Island and signed onto a joint testimony against a bill limiting patient access to biomarker testing. Patient Access and Affordability Project Webpage: CMS Principles Patient Access and Affordability Project Webpage Patients Rising Now Webpage: Rhode Island Letter Rhode Island State Legislature Webpage: Senate Bill 799 Patients Rising Now Webpage: Biomarker Letter  

Russ Paulsen, Chief Operating Officer for UsAgainstAlzheimer's, explains how some recent coverage decisions from CMS are affecting thousands of patients a day; ACIP's public comment period RSV vaccines is officially open; Tony Newberne, a patient advocate from NC's 14th congressional district, discusses his policy priorities, including QALY reforms, as he gets ready for Patients Rising Now's Washington D.C. We The Patients Fly-In; and Patients Rising Now has submitted a letter to the Massachusetts Joint Committee on Health Care Financing supporting bill S754 which would mandate comprehensive coverage for obesity treatment. UsAgainstAlzheimer's Webpage: New Poll: Huge Majorities Want Medicare to Cover Cost of Alzheimer's Drugs CDC Webpage: ACIP Meeting Information Massachusetts Legislature Webpage: Bill S.754  

Dr. Bruce Hennessy, a gastroenterologist with the American Society for Gastrointestinal Endoscopy, discusses UnitedHealthcare's decision to require new prior authorization for 61 procedures, including colonoscopies. In response to provider and patient concerns, UHC has amended its prior authorization requirements. The Medicaid work requirement has been stripped from the debt ceiling negotiations bill; Valerie Jensen, Associate Director for Drug Shortages in the Center for Drug Evaluation and Research at the FDA, outlines the challenges and potential solutions to the ongoing drug shortages; and the Consumer Product Safety Commission recently released some new stock photos that include people with physical disabilities. UnitedHealth backs off contentious prior authorization plan UnitedHealthcare Letter FDA Report: Drug Shortages NPR News Article: People with disabilities aren't often seen in stock photos. The CPSC is changing that  

On Wednesday, 19 bills were set to be marked up including the PATIENT Act of 2023, and a 340B transparency bill; the House Committee on Oversight and Accountability held a hearing to investigate PBMs; and Patients Rising Now has compiled a Patient Impact Report on the impacts of PBM practices on patients. House Committee on Energy and Commerce Markup Buddy Carter Report: PBM Abuses Patients Rising Now Webpage: Patient Impact Report – Pharmacy Benefit Managers  

The House Energy and Commerce Health Subcommittee planned to markup 17 bills, but instead, the subcommittee only worked on six; Federal Trade Commission expands its probe into pharmacy benefit managers and group purchasing organizations; Carl Schmid, Executive Director of the HIV and Hepatitis Policy Institute, explains what alternative funding vendors are and how they're another deterrent to patients getting affordable care; and the House Appropriations Committee releases an FDA funding bill. Patients Rising Now Statement: Patients Rising Now CEO Wilcox Offers Statement on Senate Introduction of Copay Accumulator Legislation House Energy and Commerce Health Subcommittee Meeting Fierce Healthcare News Article: FTC expands probe into pharmacy benefit managers to GPOs Patients Rising Webpage: Patients Rising Stories  

Dr. Clive Fields, Co-Founder of VillageMD, discusses the current healthcare worker shortage and some possible solutions; the Senate Finance Health Care Subcommittee holds a hearing to improve access to rural healthcare; the House Energy and Commerce Health Subcommittee holds a markup of 17 bills including a 340B bill for transparency; and patient correspondent Montana Kirby explains why Medicaid Expansion in North Carolina is so important for chronic disease patients. VillageMD Webpage Senate Finance Webpage: Improving Health Care Access in Rural Communities: Obstacles and Opportunities House Energy and Commerce Webpage: A Health Subcommittee Markup of 17 Bills Patients Rising Webpage: Patients Rising Stories