Patient Groups, Big Pharma and Medicare Price Negotiation
Overwhelming Majority of Groups Supporting Weakening Medicare Drug Price Negotiations Have Ties to Prescription Drug Corporations and the Health Industry
By Steve Knievel and Rick Claypool
Key Findings
- Out of the 74 organizations that signed onto a recent letter in support of the EPIC Act, which would delay Medicare drug price negotiations for at least eleven years after a drug first receives FDA approval, at least 54 (74%) have direct financial or partnership relationships with prescription drug corporations.
- Out of the 74 organizations that signed the letter, 64 (86%) are funded by or affiliated with corporate interests.
- When combining signatories that are divisions of the same organization, there are 70 signatories, 64 (91%) of which are funded by or affiliated with corporate interests.
Patient Groups and Big Pharma Funding
When patient groups side with the pharmaceutical industry against proposed policy reforms, they lend credibility and a sympathetic voice to industry lobbying efforts. While donations from the pharmaceutical industry no doubt enable patient groups to do work that makes significant, even life-changing impacts in the lives of individuals they serve, it does compromise their independence.
Industry funding tends to make groups more sympathetic to industry positions, and more likely to respond to industry requests to weigh in on policy issues, including matters about which they may have limited expertise. While groups accepting Big Pharma funding should not be foreclosed from participating in public policy debates, the fact of that funding should be disclosed in the context of their policy debate interventions.
The Medicare Drug Price Negotiation Program and the EPIC Act
On August 16, 2022, President Joe Biden signed into law the Inflation Reduction Act (IRA), which for the first time empowers Medicare to negotiate drug prices directly with pharmaceutical manufacturers. The Congressional Budget Office (CBO) has estimated that in the first six years negotiated drug prices are available through Medicare, the government will save nearly $100 billion. Savings are projected to increase with time, reaching $25 billion in 2031 alone. Medicare enrollees will save billions more through lower premiums and reduced out-of-pocket costs stemming from negotiations.
The Medicare Drug Price Negotiation Program established through the IRA represents a monumental step forward in bringing savings to patients and taxpayers through lower drug prices. However, those savings are limited by strict and narrow parameters that determine what prescription drugs are eligible for negotiation, and of those eligible drugs, which and how many the Center for Medicare & Medicaid Services (CMS) is required to select for price negotiations each year. One such provision limits eligibility for Medicare price negotiation to single-source drugs approved at least seven or 11 years ago, for small-molecule drugs and biologics, respectively. Negotiated prices become available through Medicare plans at least nine or 13 years after a product first receives marketing approval.
The EPIC Act would diminish the impact of the program by increasing the negotiation delay period of small-molecule drugs by four years so it is at least 13 years after FDA approval before negotiated prices are available for any drug through Medicare. By delaying drug price negotiations beyond existing delay periods, the EPIC Act would subject seniors and people with disabilities on Medicare to higher prices for longer and erode the savings realized by taxpayers through the negotiation program.
Discussion
One of the key reasons other high-income countries achieve prescription drug prices approximately one quarter to one half of those in the United States is that they negotiate with manufacturers shortly after a product launch. Instead of heeding that lesson, the EPIC Act would take us in the opposite direction by subjecting Medicare beneficiaries to higher prices for longer.
The prescription drug lobby has argued that the delay period for small molecule drugs should be lengthened by four years to match that of biologic drugs. But studies have shown that small molecule drugs typically enjoy market exclusivity for around 12–14 years before generic competitors enter the market. If the negotiation delay period was increased to 13 years for all or some small molecule drugs, it would effectively exclude many of these medicines from negotiations entirely or shorten the period patients have access to lower negotiated prices to only one or two years before generics enter the market, blunting the impact of the law. Indeed, CMS quietly announced that three out of the ten drugs selected in the first year of the Medicare drug price negotiation program will be removed from the program after only one year of being subjected to negotiated prices.
Additionally, many of the drugs that have faced Medicare drug price negotiations so far would have been excluded were the lengthier EPIC Act delay period already in place. In the first negotiating round, Medicare would have been barred from negotiating lower prices for five out of the ten drugs that now have lower, Medicare-negotiated prices that will become effective on January 1, 2026, and more than half of the 15 drugs with negotiated prices effective in 2027.
The bottom line is that no one has access to medicines they cannot afford. Lengthening the negotiation delay period would keep prices higher for longer, costing taxpayers and patients tens of billions of dollars while reducing access to medicines for seniors and people with disabilities.
An overwhelming majority of Americans support Medicare negotiating prices for more drugs, not exempting more drugs from negotiation. Policymakers should reject attempts from Big Pharma and its allies to weaken Medicare drug price negotiation through the EPIC Act or any other legislation.
Methodology
This report’s findings are based on an analysis of patient groups that signed on to a letter supporting the EPIC Act organized by the Global Coalition on Aging. Public Citizen visited each of the 74 groups’ websites seeking disclosures of pharmaceutical industry sponsorships and partnerships. Some groups prominently displayed the logos of industry sponsors; for others, companies sponsored specific events or programs or were listed among organizational benefactors in annual reports and other publications. A full list of the patient groups with links to the source of the groups’ corporate sponsor and partner information is provided below. Groups organized as 501(c)3 and 501(c)4 nonprofit organizations, as most of these are, are not required to disclose corporate contributors. The voluntary disclosures organizations to provide on their websites offer a limited view into their funders and partners, and may not reflect current funding arrangements.
Table: Corporate Allies of Patient Groups Supporting the EPIC Act
Note: Source links available in PDF version of report.
| Group | Corporate and Big Pharma Backers and Partners |
|---|---|
| Global Coalition on Aging | Aegon, Amgen, Bank of America, Bayer, Biogen, Deloitte, Edwards, Eli Lilly, Gilead, GSK, Home Instead, MSD, Novartis, Nutricia, Origin, Pfizer, Philips, Sanofi, Shionogi, TIAA, Uber, UCB |
| Alliance for Aging Research | Amgen, Applied Policy, Biogen, Bristol Myers Squibb, Eli Lilly, Genentech, GSK, Johnson & Johnson, Moderna, Novo Nordisk, Omnicom Health Group, Otsuka America Pharmaceutical, Pfizer, Sanofi |
| 60 Plus Association | Past funding from groups associated with the billionaire Koch brothers |
| ADAP Advocacy Association | Gilead, Merck, Janssen, ViiV Healthcare, Ramsell, ScriptGuide Rx |
| Aging Life Care Association | Numerous nursing homes, medical facilities, home care companies, medical supply companies, healthcare product companies, legal and financial service companies |
| AiArthritis | Bristol Myers Squibb, Novartis, Amgen, Abbie, Janssen |
| Alliance for Women's Health and Prevention | Amgen, Exact Sciences, Guardant, Hologic, Eli Lilly, Novo Nordisk, Bayer, Sanofi |
| American Association of Senior Citizens | Apparent non-profit affiliate of the Koch-backed 60 Plus Association |
| American Behcet's Disease Association | Amgen |
| American College of Clinical Pharmacy | None found |
| American Foundation for Women's Health | Bristol Myers Squibb, Pfizer, Anthos Therapeutics, Johnson & Johnson, Medtronic, Novartis, Sanofi, iRhythm |
| American Society of Consultant Pharmacists (ASCP) | Acadia, Neurocrine Biosciences, Otsuka, Pfizer, PharMerica, Janssen, Sumitomo Pharma, Xeris Biopharma, Premier, Innovatix, GeriMed, MHA, Baxter, Eli Lilly, Sanofi, SoftWriters, RedSail Technologies, Thirdwave, VMI Care |
| American Urological Association (AUA) | Pfizer, Calyxo, Telix |
| Autoimmune Association | AbbVie, Aetna, Amazon, American Eagle Lifecare Corporation, American Express, Amgen, Applied Materials, AT&T, Bank of America, Best Buy, Blackbaud, Bristol Myers Squibb, Chevron, Eli Lilly, EMD Serono, Exelon Corporation, Fossil Group, Genentech, Goodshop, Horizon Therapeutics, IBM, iMD Health, Immunovant, Indie Lee & Co., Janssen, JPMorgan Chase, KPMG, Kroger, Mallinckrodt, Medtronic, Merck, New York Life, Pepsico, Pfizer, PhRMA, Pricewaterhouse Coopers, Shell Oil, Takeda Pharmaceuticals, The Capital Group Companies, The Carlyle Group, Walt Disney, ZS Associates |
| Biomarker Collaborative | Neo Genomics, Protean Biodiagnostics |
| Bone Health and Osteoporosis Foundation | Amgen, UCB Inc, Novo Nordisk, Sandoz, AvoMD, Radius Health, Springer-Verlag London, Sunsweet Growers Inc., Alexion Pharmaceuticals |
| Cancer Support Community | Abbvie, AstraZeneca, BeOne Medicines, Blueprint Medicines Corporation, Bristol Myers Squibb, Costco, Eisai, Freedom Pay Inc, Genentech, Geron, Gilead Sciences, GRAIL, GSK, Jazz Pharmaceuticals, Johnson & Johnson Healthcare Systems, Kite Pharma, Eli Lilly, McKinsey & Company, Medscape Oncology, Merck, MorphoSys, Novartis, Novocure, Pfizer, PhRMA, Sandoz, Sanofi, Sobi, Taiho Oncology, Takeda |
| Caregiver Action Network | First Quality, Eisai, Eli Lilly, Novartis, Otsuka, Teva, Alnylam, Bristol Myers Squibb, Neurocrine Biosciences, Vertex Pharmaceuticals, Acadia Pharmaceuticals, Alkermes, CareScout, Lundbeck, Nomo Smart Care, PhRMA |
| Caring Ambassadors Program | Eisai, Foundation Medicine, Genentech, Gilead, GSK, Pfizer, PhRMA |
| CaringKind, The Heart of Alzheimer's Caregiving | Eisai, Eli Lilly, Axsome Therapeutics, Vireo Health, Acadia Pharmaceuticals |
| Cervivor, Inc. | None found |
| Chronic Care Policy Alliance | None found |
| Coalition of State Rheumatology Organizations | Abbvie, Amgen, Johnson & Johnson, Pfizer, Boehringer Ingelheim, GSK, Novartis, Bristol Myers Squibb, Sanofi, UCB, AstraZeneca, Mallinckrodt, PhRMA |
| Color of Gastrointestinal Illnesses | Johnson & Johnson, Merck, Pfizer, Takeda, Amgen, Ardelyx, Boehringer Ingelheim, Genentech, Eli Lilly, Viatris, Novo Nordisk, Ironwood Pharmaceuticals |
| Community Liver Alliance | Abbvie, Exact Sciences, Exelixis |
| COPD Foundation | GSK, insmed, Sanofi, Regeneron |
| Cutaneous Lymphoma Foundation | Helsinn, Kyowa Kirin, Therakos LLC |
| Depression and Bipolar Support Alliance (DBSA) | Canadian Imperial Bank of Commerce (CIBC) USA, Alkermes, Boehringer Ingelheim Pharmaceuticals, Compass Pathways PLC, Intra-Cellular Therapies (ICTI), Johnson & Johnson, Lundbeck Pharmaceuticals, Myriad Genetics, Neumora Therapeutics, Neocrine Biosciences Inc, Otsuka America Pharmaceutical, Takeda Pharmaceuticals America, Teva Pharmaceuticals, Clexio Biosciences, Axsome Therapeutics, PhRMA |
| Exon 20 Group | ICAN discloses "alliances" with industry-backed groups including the Biotechnology Industry Organization, Alliance for Safe Biologic Medicines, and Personalized Medicine Coalition |
| GJPI INC. | GJPI is affiliated with the Global Coalition on Aging, a business advocacy group whose membership includes Aegon, Amgen, Bank of America, Bayer, Biogen, Deloitte, Edwards, Gilead, GSK, Home Instead, Eli Lilly, MSD (Merck), Novartis, Nutricia, Origin., Pfizer, Philips, Sanofi, Shionogi, TIAA, Uber, and UCB |
| Global Healthy Living Foundation | Abbvie, Allergan, Amgen, Novartis, Ani Pharmaceuticals, Bristol Myers Squibb, Crescendo Bioscience, Genentech, GSK, Horizon Therapeutics, Janssen (Johnson & Johnson), Eli Lilly, Lundbeck, Pfizer, Sanofi Genzyme, Takeda, UCB, Walgreens |
| Health Hats | None found |
| Healthcare Leadership Council | Advent Health, Alvarez & Marsal, Amazon, Amgen, AstraZeneca, Baxter, Blackstone, Cencora, ConnectiveRx, Cotiviti, eHealth, Envision Healthcare, Epic, Ferring Pharmaceuticals, Frist Cressey Ventures, GuideWell, Johnson & Johnson, KPMG, Labcorp, Leidos, LifeScience Logistics, McKesson, McKinsey & Company, Merck, Modern Health, NCD, Novartis, Oracle Health, Pfizer, Premier, Senior Helpers, Stryker, Surescripts, The Cigna Group, Trimedx, UnitedHealth Group, Verily, Vizient, Well, Wellvana Health, ZS |
| Healthy Men Inc | None found |
| HealthyWomen | Amgen, Astellas, Bayer, BIO, Bristol Myers Squibb, Daiichi Sankyo, Edwards Lifesciences, Eli Lilly, GSK, Hologic, Immunovant, Merck, Novartis, Novo Nordisk, Organon, Pfizer, PhRMA, Sandoz, Sanofi Regeneron, Sumimoto Pharma America, UCB, Viatris |
| Heart Valve Voice US | Abbott Laboratories, Edwards Lifesciences |
| Hepatitis C Mentor and Support Group-HCMSG | Gilead, AbbVie |
| HIV+Hepatitis Policy Institute | Pfizer, Gilead, Amgen, UCB, Genentech, Bristol Myers Squibb, Abbvie, ViiV Healthcare, Avitacare, Johnson & Johnson |
| ICAN, International Cancer Advocacy Network | ICAN discloses "alliances" with industry-backed groups including the Biotechnology Industry Organization, Alliance for Safe Biologic Medicines, and Personalized Medicine Coalition |
| International Pemphigus & Pemphigoid Foundation | Cabaletta Bio, Sanofi Regeneron |
| LUNGevity Foundation | AstraZeneca, Bristol Myers Squibb, Johnson & Johnson, Daiichi-Sankyo, Genentech, Merck, Regeneron, Gilead, Natera |
| Lupus and Allied Diseases Association, Inc. | Abbvie, Alexion, Amgen, Argenx, AstraZeneca, Biogen, Bristol Myters Squibb, Cabaletta Bio, EMD Serono, GSK, Idorsia, Johnson & Johnson, Eli Lilly, Kyowa Kirin, Nkarta, Novartis, Pfizer, Takeda, UCB, Viatris, Zenas BioPharma |
| Mental Health America | Axsome Therapeutics, BASF Corporation, Castle Biosciences, Cerevel Therapeutics, Johnson & Johnson Innovative Medicine, Karuna Therapeutics, Lundbeck, Microsoft, Myriad Genetics, Neurocrine Biosciences, Otsuka America Pharmaceutical, Sage Therapeutics, Teva Pharmaceuticals, West Fraser, X-Flow Games |
| MET Crusaders | Supported by corporate-funded foundations Lungevity and GO2 for Lung Cancer |
| National Association For Continence | Abbvie, Astellas, Axonics, Cook Myosite, Takeda |
| National Black Nurses Association | None found |
| National Grange | None found |
| National Hispanic Health Foundation | Amgen, Otsuka, Eli Lilly, Bristol Myters Squibb, Pfizer, Centene, Genentech, Johnson & Johnson, Novo Nordisk, Sanofi Pasteur, Vertex |
| National Menopause Foundation | None found |
| National Minority Quality Forum | Abbvie, Amazon, Amgen, Ardelyx, Baxter, Biogen, Blue Cross Blue Shield, Bristol Myers Squibb, Centene Corporation, DaVita, Dexcom, Genentech, Gilead, GSK, Health Care Service Corporation, Hologic, Integrative Emergency Services, Ipsen, Jazz Pharmaceuticals, Johnson & Johnson, Eli Lilly, Mallinckrodt, Merck, Novo Nordisk, Pfizer, PhRMA, Regeneron, Sanofi, Takeda, Vertex |
| National Transitions of Care Coalition (NTOCC) | Axa Assistance USA, UnitedHealth Group |
| Neuropathy Action Foundation | None found |
| Organic Acidemia Association | Leadiant Biosciences, Moderna, Nutricia, Eton Pharmaceuticals, Abbott |
| Partnership to Fight Chronic Disease (PFCD) | Astellas Pharma, Biotechnology Industry Organization, Eisai Inc, Eli Lilly, GlaxoSmithKline, Johnson & Johnson, PhRMA, Takeda Pharmaceuticals, US Chamber of Commerce |
| Patient Empowerment Network | Pfizer |
| Patients Rising | Abbvie, AstraZeneca, Biogen, Esai, GSK, Johnson & Johnson, Eli Lilly, Merck, Otsuka, Pfizer, PhRMA, Sanofi, Sarepta Therapeutics, Soleno Therapeutics, Stand Together (Koch-backed foundation), Takeda, Viatris |
| PD-L1 Amplifieds | An apparent project of ICAN (executive director is also the president and CEO of ICAN and the executive director of Exon 20 Group). ICAN discloses "alliances" with industry-backed groups including the Biotechnology Industry Organization, Alliance for Safe Biologic Medicines, and Personalized Medicine Coalition. |
| Pioneer Institute | A "free market" think tank historically backed partly by Koch funding and Boston-area banks and insurance companies. Funders are characterized in a Political Research Associates report as having a "shared interest in opposing government regulation" |
| PlusInc | Avita Care Solutions, Bristol Myers Squibb, Gilead, Johnson & Johnson, Merck, PhRMA |
| Prevent Blindness | ABB Optical, AbbVie, AEG Vision, Alcon Vision, Alcon Laboratories, Inc., Alexion Pharmaceuticals, Inc., Alkeus Pharmaceuticals, Inc, Amgen, Apellis Pharmaceuticals, Inc., Astellas Pharma, Bausch & Lomb, Inc., BioCryst Pharmaceuticals, Biotechnology Innovation Organization, Clearvision Optical Company, CooperVision, DigitalOptometrics LLC, East Optical, Essilor Laboratories of America LP, EssilorLuxottica, Europa Eyewear, EyeMed Vision Care, Genentech Inc., Gilbert Displays, Glaukos Corporation, Haag-Streit, Immunovant Inc., INVISION – SmartWork Media, Janssen Pharmaceuticals, Jobson Interactive, Jobson Medical Information LLC, Jobson Optical Group, Johnson & Johnson Innovative Medicine, Johnson & Johnson Vision, Keplr Vision, Kyowa Kirin Inc., L’Amy America, Liberty Sport, MacuHealth, Mallinckrodt Pharmaceuticals, Marchon Eyewear Inc., Marcolin USA Eyewear, Match Eyewear, The McGee Group, MyEyeDr., National Vision Inc., Neurolens, NeuroVisual Vision Institute, New York Eye, Novartis Ophthalmics Inc., Ocuco Inc., Ocular Therapeutix, OCuSOFT Inc., Paradigm Medical Communications, Pharmaceutical Research and Manufacturers of America, Regeneron Pharmaceuticals Inc., RegenxBio, Safilo USA Inc., Shamir Insight Inc., Silhouette, Spark Therapeutics, Topcon Medical Systems, Tourmaline Bio, United Health Care, Valeant – Bausch & Lomb, Viatris, Viridian Therapeutics, Vision Expo, Vision Service Plan, Vision Source, Walman Optical, WestGroupe USA Inc., Zeiss, Zenni Eyewear, Zyloware Eyeware |
| Pulmonary Hypertension Association | Johnson & Johnson, Gossamer Bio, Liquidia, Merck, Accredo, Bayer, CVS, United Therapeutics |
| Red Hot Mamas North America Inc. | None found |
| RetireSafe | PhRMA, Pfizer, Amgen, BIO |
| Second Wind Dreams, Inc. | Sunrise Senior Living, ADP, Atrium Hospitality, Home Depot, Lexis Nexis, Workday, Aramark, Audicus |
| Spondylitis Association of America | Abbvie, Novartis, Amgen, Bristol Myers Squibb, UCB, Augurex |
| StopAfib.org | A project of the American Foundation for Women's Health, which is supported by Bristol Myers Squibb, Pfizer, Anthos Therapeutics, Johnson & Johnson, Medtronic, Novartis, Sanofi, iRhythm |
| The Bonnell Foundation: Living with Cystic Fibrosis | Vertex Pharmaceuticals |
| The Mended Hearts, Inc. | Alnylam Pharmaceuticals, Amgen, Bayer, Bristol Myers Squibb, Johnson & Johnson, Pfizer, Kardigan, Novartis, Abbott, AstraZeneca, Boehringer Ingelheim, Bridge Bio, Cytokinetics, Edgewise Therapeutics, Edwards, Eli Lilly, Merck, Novo Nordisk |
| Tigerlily Foundation | Amgen, Astellas, AztraZeneca, Bayer, Bristol Myers Squibb, Exact Sciences, Genentech, Genmab, Gilead, GSK, Hologic, Jazz Pharmaceuticals, Labcorp, Eli Lilly, Macrogenics, Merck, Novartis, Pfizer, PhRMA, Seagen, Takeda |
| Vasculitis Foundation | Amgen, AstraZeneca, GSK, Novartis |
| Voices of Alzheimer's | Biogen, Eisai, Novo Nordisk, Eli Lilly, Otsuka, Bristol Myers Squibb, Prothena |
| Washington Health Innovation Council | Membership includes "Healthcare investors, trade associations, provider societies, medical technology innovators, biopharmaceutical manufacturers" |
| WHAM (Women's Health Access Matters) | Walgreens, Ask Bio, Ferring Pharmaceuticals |
| ZERO Prostate Cancer | Pfizer, Abbvie, Astellas, AstraZeneca, Bayer, Boston Scientific, Dendreon, Lantheus, Sanofi, Johnson & Johnson, Novartis, Daiichi-Sankyo, Bristol Myers Squibb, Merck, Exact Sciences, Exelixis, Foundation Medicine, Intuitive, Macrogenics, Accord BioPharma, Tolmar, Sonablate HIFU, Viatris, Amgen, Promise., Telix, Mack Weldon |