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The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > ALZHEIMERS Alzheimer's Disease According to the CDC, an estimated 6 million Americans are living with Alzheimer's disease. In 2020, the estimated cost of caring for and treating people with Alzheimer’s - health care, long-term care, and hospice and more - was $305 billion. Supporting efforts to better detect, treat and prevent the onset of this costly chronic disease is critical. For more information on the fight fo Alzheimer's patients, families and caregivers, please visit: WWW.PFCDALZ.ORG LETTER Sign On Letter to Congress re: CMS NCD with CED for Alzheimer's treatments VIDEO Congressional Leaders Champion Access for People with Alzheimer's Disease (April 2023) PATIENT PROFILE Geri Taylor INFOGRAPHIC Leaving Medicare Beneficiaries in Limbo INFOGRAPHIC The Long Road to Treatment: Medicare's CED Clinical Trial Policy INFOGRAPHIC Patient Registries Under CED: Checklist of Endless Difficulties INFOGRAPHIC The Overwhelming Evidence in Support of Amyloid PET INFOGRAPHIC Amyloid Beta PET Scans: By the Numbers INFOGRAPHIC Alzheimers Disease Fact Sheet

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > SUPPORT FOR THE ENSURING PATHWAYS TO INNOVATIVE CURES (EPIC) ACT > SIGN-ON LETTER TO CONGRESS Sign up for: Preserving Accessibility and Incentives for Development of Small Molecule Medicines for Chronic Diseases Thank you for your consideration of this sign on letter highlighting important access issues for patients living with one or multiple chronic conditions. Dear Members of Congress: The Inflation Reduction Act of 2022 (IRA) includes changes to improve medication affordability for some Medicare beneficiaries, such as capping annual out-of-pocket spending, increasing low-income subsidy eligibility, spreading out-of-pocket costs over time, and capping copayments for insulin products under Medicare Part D. Lowering financial barriers will help millions of people reliant on Medicare—particularly those living with one or more chronic conditions—to improve and maintain their health. As we commend these aspects of the IRA, however, we also call for changes to the law to avoid the negative, unintended consequences of provisions that will undermine the progress made on access. In particular, we are concerned about the provisions in the IRA that treat small-molecule medicines--drugs that often come in simple to use forms, such as pills, tablets, and patches--as less important by subjecting them to government pricing 9 years after FDA approval instead of the 13 years afforded to biologics. The bipartisan Ensuring Pathways to Innovative Cures (EPIC) Act, HR 7174, would equalize the timeframe for government pricing at 13 years post-approval for both biologics and small-molecule drugs. We urge you to co-sponsor the EPIC Act and work toward its passage. Both biologics and small molecule medicines are critically important to people living with chronic diseases. Biologics are complex therapeutics derived from living cells or through biological processes. Their large, complex structures make biologics more sensitive to physical conditions, which often requires them to be administered in a physician’s office via an infusion or injection. In contrast, small-molecule medicines have simpler chemical structures and tend to be more stable, meaning they often come in pill or tablet form and therefore can be picked up by patients at their local pharmacy and taken at home. Additionally, because of their simpler structures, small-molecule medicines can be more easily genericized once patent protections expire. Most older adults in the U.S. rely on prescription medicines to maintain their health. Among U.S. adults aged 65 and older, 87.5 percent take at least one prescription medicine a month. Almost 40 percent of these adults take more than five. Not surprisingly, older adults have strong preferences for medicines they can take at home. When asked to rank the importance of benefits that a new treatment offers, 91 percent of respondents to a recent survey indicated that being “able to take the medicine at home” was important or extremely important to them. A review of oncology studies found that people undergoing chemotherapy also prefer oral over IV therapies. Being able to take a medicine at home facilitates greater independence, eliminates transportation needs and expenses, removes caregiving needs associated with transportation or administration, and reduces expenses associated with the drug and administration costs. For people living with disabilities, the ability to self-administer a medication at home also alleviates the need to overcome physical barriers to access and limits physical and emotional stressors associated with leaving home, transportation, and time spent in a medical environment to receive an infusion. Moreover, many offices and hospitals are also often ill-equipped to respond to the needs of older people or those living with disabilities, creating additional treatment barriers. Travel costs, lack of transportation, housing and food insecurity, and the need to secure care for children or aging parents are regular challenges made more burdensome as the duration or frequency of office-based treatment increases. Small-molecule drugs also facilitate greater access for underserved populations and support health equity. Medically underserved populations have less access to specialty care often associated with biologics. The recurring need to travel to a healthcare facility for ongoing treatment is more than an inconvenience, and access issues relating to social determinants of health fall hardest on people of color, people living in rural areas, and people with lower incomes. People living in rural areas also face shortages of specialists like oncologists, neurologists, and rheumatologists, which adds another barrier for patients who are limited to office-based treatment. Given that more than one in five older adults live in rural areas, the unmet need for alternate routes of administration for infused medicines for Medicare beneficiaries is urgent. In contrast, nearly 90 percent of U.S. residents live within 5 miles of a community pharmacy. Prior to the IRA, long-standing federal policies and patent protections allowed drug developers 14 years, on average, to earn a return on their significant investments in research and development. One analysis found that roughly half of this return occurs in years 9 through 13 post-launch. As a result of the significantly truncated timeline created by the IRA, there is evidence that investment in research and development is already shifting away from small-molecule medicines, including those that would treat rare diseases, cancers, and other conditions. The smaller size and simpler structure of small-molecule medicines allows them unique opportunities for treating chronic conditions. Because of their ability to easily penetrate cellular walls, they can deliver medicine directly to the therapeutic cellular target, which is particularly important in the treatment of many cancers. Additionally, while the blood-brain barrier presents challenges for the delivery of medicines to therapeutic targets in the brain, small-molecule medicines are capable of crossing this barrier and are therefore particularly important in the treatment of many neurological conditions, including mental illnesses, epilepsy, stroke, and Alzheimer’s disease. We are concerned that the earlier price-setting timeline for small-molecule medicines compared to biologics creates a significant disincentive for investments into these medicines. As a result, the patients we represent will experience reduced access to new treatments, increased non-medical barriers to care, and worsening health disparities. Thankfully, the fix is straightforward: remove this disincentive by supporting the EPIC Act to set the eligibility for IRA drug pricing at 13 years post-FDA approval for both small-molecule and biologic medications. We urge you to work together to advance this bipartisan bill to preserve access to small molecule medicines before implementation of this program begins in earnest. Without change, the chilling effect on investments today will accelerate with serious consequences for Medicare beneficiaries now and in the future. Sincerely, AiArthritis Alliance for Aging Research ALLvanza Autoimmune Association Biomarker Collaborative Caregiver Action Network Center for Medicine in the Public Interest Chronic Care Policy Alliance Colorectal Cancer Alliance Council for Affordable Health Coverage Epilepsy Alliance America Exon 20 Group Global Coalition on Aging Global Down Syndrome Foundation Healthcare Leadership Council International Cancer Advocacy Network (ICAN) Men's Health Network MET Crusaders National Association for Continence National Grange National Headache Foundation National Hispanic Health Foundation National Minority Quality Forum National Scleroderma Foundation Neuropathy Action Foundation Nevada Chronic Care Coalition No Patient Left Behind Partnership to Fight Chronic Disease (PFCD) PDL1 Amplifieds Pulmonary Hypertension Association Rural Minds Schizophrenia & Psychosis Action Alliance The STARR Coalition Tigerlily Foundation United Spinal Association Name Organization Title Email Address Submit Thank you. 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The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > SUPPORT FOR THE ENSURING PATHWAYS TO INNOVATIVE CURES (EPIC) ACT > SIGN-ON LETTER TO CONGRESS RE. CMS NCD WITH CED FOR ALZHEIMER'S TREATMENTS Sign on Letter to Congress re: CMS NCD with CED for Alzheimer's treatments The Partnership to Fight Chronic Disease (PFCD) and several of our partners are working together to raise awareness and call for reconsideration of the Centers for Medicare and Medicaid Services (CMS) National Coverage Determination with Coverage with Evidence Development for an entire class of new, FDA-approved treatments for Alzheimer's Disease. This decision has ripple effects beyond just the Alzheimer's community and sets a dangerous precedent for other people living with chronic conditions. We have drafted a SIGN ON LETTER and welcome organizations to join us in calling on Congress to take action in requesting CMS to reverse this decision that compromises patients, families, caregivers and providers managing this progressive, debilitating disease. Name Organization Title Email Address Submit Thank you. Your message has been sent.

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > ARTHRITIS Arthritis According to the Arthritis Foundation, more than 50 million Americans have arthritis, making it the number one cause of disability in the country. With 1 in every 5 adults, and 300,000 children impacted by arthritis, there is also a high likelihood that many struggling with arthritis are also dealing with one or more other chronic conditions. Osteoarthritis and rheumatoid arthritis alone cost more than $156 billion a year in direct and indirect expenses. Prevent Arthritis Like most chronic conditions, some forms of arthritis can be prevented, but also better managed in order to deter further damage and alleviate symptoms. Healthy lifestyle choices like exercise and a balanced diet can help maintain strength and protect joints. Additionally, taking medicines as directed and prioritizing regular visits to your health care provider can help to address and reduce symptoms. Arthritis causes work limitations for 40 percent of the people with the disease and limits the daily activities of 21 million Americans, these limitations can be avoided with the right treatment. STUDY Gout Economic Impact Study

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > SUPPORT FOR THE ENSURING PATHWAYS TO INNOVATIVE CURES (EPIC) ACT 9/13/24 Sign-on Letter to Congress Infographic EPIC Act Needed to Protect Access to Medications for People Living with Chronic Conditions Webinar Preserving Incentives for Development and Accessibility of Small Molecule Medicines Opinion Editorial By Tweaking the IRA, This Legislation Could Save Lives, The Well News, May 1, 2024 Press Release (9/13/24) Chronic Disease Patient Groups Call on Congress to Protect Small Molecule Medicine Access and Innovation Press Release (2/1/24) Preserving Access to Small Molecule Medicines Critical for People Living with Chronic Conditions

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > QUANTIFYING IMPACT OF ACCELERATED APPROVAL DRUGS ON MEDICAID SPENDING > FACES OF ACCELERATED APPROVAL Patient Stories : #Fight4Health: The Food & Drug Administration’s accelerated approval pathway has been essential for speeding up the availability of new and effective treatments for patients with serious and often-life-threatening diseases where there are no other treatments available. Right now, efforts are underway that would undermine the pathway and risk bringing us back to a time when promising therapies languished in regulatory limbo while patients waited without any treatment options. Patients’ voices are often absent from debates about the accelerated approval pathway, so we are sharing their stories here. Learn how patients’ lives have been changed by treatments approved through the FDA’s accelerated approval pathway. Ivy Elkins , Evanston, IL Lung Cancer Billy Ellsworth , Pittsburgh, PA Duchenne Muscular Dystrophy Laura Kelly , Atlanta, GA Nontuberculous Mycobacteria (NTM) Jordan McLinn , Indianapolis, IN Duchenne Muscular Dystrophy Geri Taylor , New York, NY Alzheimer's Disease Teonna Woolford , Owings Mills, MD Sickle Cell Disease Marc Yale , Ventura, CA Mucous Membrane Pemphigoid As we work with partners, like the EveryLife Foundation for Rare Diseases , to build greater understanding around these critical programs and to hold public and private payers accountable to their mission of providing health care access to America’s most vulnerable populations, PFCD encourages you to learn more by visiting www.fightchronicdisease.org/resources/acceleratedapproval which includes backgrounders, economic analyses, American Journal of Managed Care commentary, infographics, opinion editorials and more. To contribute a patient or provider story to this effort, please contact Jennifer.Burke@fightchronicdisease.org .

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Medicare Pricing Exacerbates Access and Innovation Risks to People Living with Chronic Diseases Since 2007, the Partnership to Fight Chronic Disease (PFCD) has been an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease. The Problem: Preventable and Mismanaged Chronic Disease Chronic diseases, such as diabetes, COPD, cancer, depression, obesity and heart disease, are the leading causes of death and disability in the United States and account for the vast majority of health care spending. More than one in two American adults lives with at least one chronic condition and nearly one in three liv e with two or more chronic conditions. Chronic diseases are also the primary driver of health care costs—accounting for 90 cents of every dollar we spend on health care in this country. In 2011, this amounted to $2.3 trillion of the $2.7 trillion spent on health care. Despite these widespread problems, the issue of chronic disease does not register with large segments of the public and policymakers as an issue of primary concern. The Solution: A National Partnership Aimed at Fighting Chronic Disease As the CDC has said, “The United States cannot effectively address escalating health care costs without addressing the problem of chronic diseases.” Added to that, the World Health Organization estimates that as much as 80 percent of premature heart disease, stroke, and type 2 diabetes, and 40 percent of cancers could be avoided entirely if Americans avoided tobacco, developed healthier eating habits, and were more physically active . That’s why a broad group of patient, provider, community, business and labor groups, and health policy experts, joined together to form the Partnership to Fight Chronic Disease (PFCD)—a coalition committed to raising awareness of the rising rates of preventable and treatable chronic diseases. Our Mission: Rising rates of chronic diseases pose an unsustainable burden on our health care system. The viability and strength of the system—now and in the future—rely on a willingness to enact policies that help Americans better prevent and manage chronic illnesses. As a result, the mission of the PFCD is to: Drive awareness of burden of chronic disease and solutions at work shown to improve health for individuals and communities Empower change in how we prevent and treat chronic disease in America to enhance health Challenge decision-makers to adopt policy changes necessary to prevent and lessen burden of chronic disease

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > QUANTIFYING IMPACT OF ACCELERATED APPROVAL DRUGS ON MEDICAID SPENDING Quantifying Impact of Accelerated Approval Drugs on Medicaid Spending: De Minimus Impact, Maximum Attention States seek to limit coverage of drugs approved through the FDA’s accelerated approval pathway designed to accelerate availability of medications that treat serious or life-threatening conditions – many cancers, HIV/AIDS, sickle cell and several other rare diseases. A new national and state analysis of Medicaid spending from 2007 to 2020 shows: From 2007 to 2020, accelerated approval medicines accounted for well under one percent of total Medicaid spending, not including drug rebates. At the national level, spending on accelerated approval drugs also accounted for just 0.5% of overall growth in national Medicaid spending between 2007 and 2020. Hospital spending (30%) and physician and clinical services (15.4%) were the primary drivers of growth. After accounting for drug rebates, retail prescription drugs accounted for 5.0% of growth. Accelerated approval drugs accounted for less than 1% of the growth in Medicaid spending in 48 states and the District of Columbia. Only Alabama (1.3%) and South Dakota (2.1%) were slightly higher. In states requesting Medicaid waivers due to cost concerns, 2020 spending data shows accelerated approval drug spend is miniscule - Massachusetts (0.1%), Tennessee (0.4%) and Oregon (0.1%). These data support preserving access to accelerated approval drugs for the seriously ill. WHITE PAPER May 2022 - Quantifying Impact of Accelerated Approval Drugs on Medicaid Spending: An Update through 2020 and State-Level Analysis WHITE PAPER March 2021 - Quantifying Impact of Accelerated Approval Drugs on Medicaid Spending: De Minimus Impact, Maximum Attention COMMENTARY 6/3/22 – Health Affairs Forefront: Accelerated Approval Drugs Are Not Driving Medicaid Spending COMMENTARY 3/30/21 - American Journal of Managed Care: Limiting Access to Accelerated Approval Drugs: Costs and Consequences LETTER Letter to MACPAC about Considerations on Accelerated Approval Drugs VIDEO Accelerated Approval 101 VIDEO Accelerated Approval: Getting Essential New Treatments to Patients PATIENT VOICES Faces of Accelerated Approval FACT SHEET Patient-Centered Principles: Accelerated Approval INFOGRAPHIC Accelerated Approval Drugs Do Not Drive Medicaid Spending FACT SHEET FDA's Expedited Programs: Getting Essential New Treatments to Patients FACT SHEET What Experts Say About FDA's Expedited Programs PRESS RELEASE 6/3/22 - New Analysis Finds Accelerated Approval Drugs Do Not Drive Medicaid Spending PRESS RELEASE 3/30/21 - New Analysis of Medicaid Spending Reinforces Value and Patient Impact of FDA Accelerated Approval Pathway OPINION EDITORIAL 10/20/21 - FDA's Accelerated Approval Pathway: Separating Fact from Fiction - Pat Furlong, Annie Kennedy & Ken Thorpe OPINION EDITORIAL 5/3/21 - Curtailing Medicaid coverage of accelerated approval therapies threatens patients' access - Terry Wilcox & Teonna Woolford PODCAST Patents and Accelerated Approval for Drugs PODCAST This is Growing Old by the Alliance for Aging Research - Episode 27

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > DEFINING "UNMET MEDICAL NEED" Defining "Unmet Medical Need" Patients, people with disabilities, and their caregivers want their experiences and outcomes that matter to them to be considered when the government or other payers make decisions about their treatments. The Inflation Reduction Act (IRA) directs the U.S. Federal government to establish the price for some of the highest selling drugs in the Medicare program based on a number of factors including whether the drug serves an “unmet medical need” relative to other therapeutic options. This report highlights the perspectives of the patient community on “unmet medical needs” based on survey research and public comments from patient advocacy groups and compares those findings to the government’s proposed approach to consider unmet medical needs under the IRA. WHITE PAPER Defining "Unmet Medical Need" in the Inflation Reduction Act for the Maximum Fair Price Reflecting Patient Input

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > OBESITY Obesity #Fight4Health: In 2013, the American Medical Association declared obesity a disease. Since then, the prevalence and impacts of this disease have been even further widespread. Policy support on the national and state level is urgently needed to better address this costly chronic disease. Obesity in the U.S. amounts to about $173 billion a year in healthcare costs. Obesity spans all ages and ethnicities. VIDEO Obe$ity in America: Making Cost Reducation a Reality BLOG America Has Both an Obesity and a Health Care Cost Problem TAKE ACTION Making America Healthy Can't Wait - Petition & Letter Opportunities WEBINAR Weighing In: How Can We Make the Most Impact on Obesity? INFOGRAPHIC Obe$ity is an increasingly costly disease Journal 12/5/24: JAMA Network Estimated Reduction in Health Care Spending Associated with Weight Los in Adults Press Release 12/5/24: New Analysis Shows Weight Loss Saves Employers and Medicare Health Care Costs 2/26/24 PFCD Chair Ken Thorpe in Medical Economics "The burden of obesity isn't measured just in pounds" 2/26/24 PFCD Chair Ken Thorpe in Medical Economics "The burden of obesity isn't measured just in pounds" 11/14/2023 American Medical Association (AMA) urges insurance coverage parity for emerging obesity treatment options NIDDK Overweight & Obesity Statistics 2023 CDC Adult Obesity Prevalence Maps U.S. DATA MAP:

Partnership to Fight Infectious Disease is a group of patients, providers, community organizations, business and labor groups, and health policy experts working to advance awareness and action on antimicrobial resistance. PFCD in the States As lawmakers continuously review changes to our health care system, it is incumbent upon leaders on both sides of the aisle to acknowledge the single largest driver of health care spending – chronic disease – and present a concrete plan for addressing this human and economic threat. Ninety cents of every health care dollar spent is spent on treating people with chronic disease. Chronic diseases are the leading causes of death and disability. One in two Americans lives with at least one chronic condition and almost three in four older Americans have one or more than one chronic condition. The good news is that most chronic diseases are preventable or manageable. With a health care system that better detects, treats, and manages chronic disease, we can change our nation’s health care story, improve the lives of millions of Americans, and strengthen our economy by tackling chronic disease. Join us in the #Fight4Health and demand leadership on the issue from all our policymakers.

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease What's the Latest Chronic Disease Patients Prioritized in Trump Administration Executive Order Successfully addressing the true cost drivers in health care requires policies that recognize the promise of small molecules and stop the... 16 hours ago April 30 - Symposium: Prevention & Treatment of Chronic Disease in the Southeast PFCD Chair Ken Thorpe & the Partnership to Fight Chronic Disease (PFCD) invites you to join us for this hybrid event focused on an array... EVENT 2 days ago Partnership to Fight Chronic Disease Statement on Americans’ Access to Anti-Obesity Medications April 4, 2025 (Washington, D.C.) – The Partnership to Fight Chronic Disease (PFCD) released the following statement in response to the... PRESS RELEASE Apr 3 New Poll: Majority of Seniors with Medicare Prescription Drug Coverage Remain Unaware of New Payment Options Results Show Interest in the Medicare Prescription Payment Plan Increases as American Seniors Learn More About It April 3, 2025... PRESS RELEASE Apr 2 New Research Shows Prescription Drug Affordability Boards Will NOT Benefit Patients Findings Show Upper Payment Limits (UPLs) Could Increase Costs and Restrict Access to Critical Medicines March 31, 2025 (Washington,... PRESS RELEASE Mar 30 America has both an obesity and health care cost problem. Their coexistence is not coincidental. New data application from a recent study further illuminates the relationship between the two... BLOG Feb 21 Biden Administration’s Latest List of Drugs Selected for Medicare Pricing Exacerbates Access and Innovation Risks to People Living with Cancers & Other Chronic Diseases January 17, 2025 (WASHINGTON, D.C.) Today, the Partnership to Fight Chronic Disease (PFCD) released the following statement in response... PRESS RELEASE Jan 17 NEW ANALYSIS SHOWS WEIGHT LOSS SAVES EMPLOYERS AND MEDICARE HEALTH CARE COSTS Modest weight loss among adults with obesity cuts health care spending by 15%, reduces costs across comorbidities December 5, 2024... PRESS RELEASE Dec 5, 2024 New Poll: Bipartisan Majority Believes Medicare Beneficiaries Should Have Access to FDA-approved Early Alzheimer's Medications the Same Way They Do for All Other Diseases American voters are willing to pay more to ensure access and want Congress to step in if Medicare continues restricting access to... PRESS RELEASE Oct 9, 2024 Chronic Disease Patient Groups Call on Congress to Protect Small Molecule Medicine Access and Innovation September 13, 2024 (Washington, DC) The Partnership to Fight Chronic Disease (PFCD) released the following statement upon delivery of a... PRESS RELEASE Sep 12, 2024 NEW DATA ILLUSTRATE HUMAN IMPACTS OF FEWER TREATMENTS RESULTING FROM INFLATION REDUCTION ACT’S PRICE CONTROLS Case studies highlight peril to treatment advances across several disease states August 14, 2024 (WASHINGTON, DC) The Partnership to... PRESS RELEASE Aug 14, 2024 Prescription Drug Affordability Board might not deliver savings to patients By Hannah Pfeiffer and Candace DeMatteis June 5, 2024 Boulder Daily Camera A group of unelected state officials is pondering a decision... BLOG Jun 4, 2024 New Insurer Perspectives Highlight Considerable Patient Challenges Anticipated from Prescription Drug Affordability Boards April 2, 2024 (Washington, DC) Today the Partnership to Fight Chronic Disease (PFCD) released a new white paper, “ Health Plans... PRESS RELEASE Apr 1, 2024 PRESERVING ACCESS TO SMALL MOLECULE MEDICINES CRITICAL FOR PEOPLE LIVING WITH CHRONIC CONDITIONS February 1, 2024 (Washington, D.C.) Today the Partnership to Fight Chronic Disease (PFCD) applauded Representatives Greg Murphy (R-NC),... PRESS RELEASE Feb 1, 2024 NEW ANALYSIS FINDS ACCELERATED APPROVAL DRUGS DO NOT DRIVE MEDICAID SPENDING Findings Published in Health Affairs Forefront Precedent-setting policies to restrict access to accelerated approval drugs do not reduce... PRESS RELEASE Jun 2, 2022 Compromising Patient Access Is Not a Path Forward for Alzheimer’s Disease CMS decision harms current and future treatment options for Alzheimer's and other chronic disease populations April 8, 2022 (Washington,... PRESS RELEASE Apr 7, 2022 NEURODEGENERATIVE DISEASE COSTS EXCEED $655 BILLION A YEAR IN MEDICAL EXPENSES AND ECONOMIC LOSSES Lack of cures combined with minimal viable treatments compounds increasing health and caregiving costs May 27, 2021 (WASHINGTON, D.C.)... PRESS RELEASE May 26, 2021 NEW ANALYSIS OF MEDICAID SPENDING REINFORCES VALUE AND PATIENT IMPACT OF FDA ACCELERATED APPROVAL PATHWAY Data support preserving access to accelerated approval drugs for the seriously ill Commentary in the American Journal of Managed Care... PRESS RELEASE Mar 29, 2021

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > PRESCRIPTION DRUG AFFORDABILITY BOARDS WILL LIMIT ACCESS TO LIFESAVING MEDICINES Press Statement New Insurer Perspectives Highlight Considerable Patient Challenges Anticipated from Prescription Drug Affordability Boards White Paper Health Plans Predict: Implementing Upper Payment Limits May Alter Formularies and Benefit Design But Won’t Reduce Patient Costs Avalere Insights Blog Research Explores Health Plan Perceptions of PDABs and UPLs PDAB Overview Infographic Prescription Drug Affordability Boards: Promise ≠ Reality PPT Overview Insurer Perspectives on PDABs OpEd Boulder Daily Camera: Prescription Drug Affordability Board Might Not Deliver Savings to Patients State boards of unelected bureaucrats are poised to have a devastating impact on patient access and affordability. Right now, the state of Colorado is actively trying to lower out-of-pocket costs on prescription medications for patients – an important and admirable goal. And Colorado is not alone. However, the legislature has moved forward with a poorly designed plan despite the repeated warnings of rare and chronic disease patients: the Prescription Drug Board will limit access to critical medicines. The Prescription Drug Board will allow a group of unelected bureaucrats to set reimbursement limits on medications. While policymakers argue that this will create savings for patients, they cannot guarantee that patients will actually see savings at the pharmacy counter or, even more grimly, continue to enjoy widespread medication access. It is more likely that any reduction in cost will go to health insurance plans who will keep any difference as profit rather than passing them on to the patients they cover. Further, the Board’s power to create upper limits on how much insurers reimburse for drugs in the state could prevent patients from accessing their medicines. If a hospital or pharmacy cannot obtain a medication at the reimbursement rate the Board has set, then they will not acquire and sell it, sell it for a loss, or find a way to cover the added cost including charging the patient the difference. This will hit people living with rare and chronic diseases the hardest. Join with us to highlight the consequences of allowing unelected bureaucrats to determine who gets their medicines and who doesn't.

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Who We Are PFCD Team Kenneth Thorpe, PhD, Chair Candace DeMatteis, Policy Director Jennifer Burke, Communications Director PFCD Partners PFCD is a 501(c)4 not-for-profit organization. The following list includes organizations we have partnered with on various projects and programs since PFCD's inception in 2007 but does not imply support for all of our public policy initiatives. Academy of Nutrition and Dietetics Advanced Medical Technology Association (AdvaMed) Alliance for Aging Research Alliance for Patient Access Alzheimer's Foundation of America American Academy of Family Physicians American Academy of Nursing American Association of Colleges of Nursing American Association of Colleges of Pharmacy American Association of Diabetes Educators American Association of Nurse Practitioners Autoimmune Association American Cancer Society Cancer Action Network American College of Lifestyle Medicine American College of Physicians American College of Preventive Medicine American Dental Education Association American Geriatrics Society American Kidney Fund American Medical Association American Medical Women's Association American Osteopathic Association American Pharmacists Association Foundation American Sleep Apnea Association American Society of Addiction Medicine American Society of Health-System Pharmacists America's Agenda: Health Care for All Arthritis Foundation Asian Pacific American Institute for Congressional Studies (APAICS) Association of State and Territorial Public Health Nutrition Directors Astellas Pharma Inc. Asthma and Allergy Foundation of America Biotechnology Industry Organization Building Healthier America Caregivers Action Network Community Health Charities The COSHAR Foundation Dialysis Patient Citizens Easter Seals Eisai Inc Eli Lilly Endometriosis Association FasterCures Genesis Philanthropy GlaxoSmithKline Healthcare Leadership Council HolaDoctor Integrated Benefits Institute International Association of Fire Fighters International Health, Racquet & Sportsclub Association Johnson & Johnson LeadingAge League of United Latin American Citizens (LULAC) The Leapfrog Group Lupus Foundation of America Marshfield Clinic Medical Fitness Association Men's Health Network Mental Health America Milken Institute NAACP National Alliance for Caregiving National Alliance of State Pharmacy Associations National Asian Pacific Center on Aging National Association of Chronic Disease Directors National Association of Manufacturers National Association of Public Hospitals and Health Systems National Association of VA Physicians and Dentists National Black Nurses Association National Caucus and Center on Black Aged National Coalition for Promoting Physical Activity National Community Pharmacists Association National Council for Mental Wellbeing National Forum for Heart Disease & Stroke Prevention National Health Council National Health Foundation National Health Policy Group / Special Needs Plan Alliance National Hispanic Council on Aging National Hispanic Medical Association National Indian Council on Aging National Kidney Foundation National Medical Association National Minority Quality Forum National Pharmaceutical Council National Recreation and Park Association NTM Info & Research (NTMir) The Ohio State University Ovarian Cancer National Alliance Pharmaceutical Research and Manufacturers of America Pharos Innovations Pharmaceutical Industry Labor-Management Association (PILMA) Population Health Alliance Prevent Blindness America ProMedica RetireSafe Sepsis Alliance Sheet Metal Workers International Association Sporting Goods Manufacturers Association STOP Obesity Alliance Takeda Pharmaceuticals U.S. Chamber of Commerce U.S. Preventive Medicine Vision Council of America WomenHeart YMCA of the USA

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > NATIONAL PANDEMIC PREPAREDNESS STRATEGY STATEMENT OF PRINCIPLES National Pandemic Preparedness Strategy Statement of Principles To anticipate and prepare for future pandemics, the United States needs to develop an effective National Pandemic Preparedness Strategy (NPPS) focused not only on the infectious pathogen, but also resulting, collateral health care challenges we can anticipate. National health emergencies threaten everyone, but pose a particularly acute danger to those with chronic and underlying conditions and those facing barriers to accessing care and other health disparities. BACKGROUND National Pandemic Preparedness Strategy Statement of Principles

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > DEFINING "UNMET MEDICAL NEED" U.S. Burden of Neurodegenerative Disease Neurodegenerative disease arises when nerve cells in the brain or other parts of the nervous system lose function and eventually die. Currently available treatments may relieve some of the associated symptoms, but there are no known cures. Neurodegenerative disease (Alzheimer’s disease and related dementias or ADRD, Parkinson’s disease and motor neuron diseases including amyotrophic lateral sclerosis, spinal muscular atrophy, hereditary spastic paraplegia, primary lateral sclerosis, progressive muscular atrophy, and pseudobulbar palsy) collectively affected 4.7 to 6.0 million individuals in the U.S. between 2016-2017. These diseases were responsible for 272,644 deaths and 3,011,484 disability adjusted life years in 2016. LITERATURE REVIEW U.S. Burden of Neurodegenerative Disease INFOGRAPHIC Neurodegenerative Disease Costs Exceed $655 Billion a Year in Medical Expenses and Economic Losses PRESS RELEASE Neurodegenerative Disease Costs Exceed $655 Billion a Year in Medical Expenses and Economic Losses

Partnership to Fight Infectious Disease is a group of patients, providers, community organizations, business and labor groups, and health policy experts working to advance awareness and action on antimicrobial resistance. Fact Sheet: Human & Economic Toll of Increase in Resistant Infections (In the States) Click on each state to download the correspondent fact sheet: OH KY WV NY PA NH CT NJ MD DE GA ME MA VT VA AZ NM AR MI OR AL CA CO ID IL IN IA KS LA MN MS MT NE NV ND OK SD TN TX UT WY AK HI WA MO WI DC RI FL NC SC

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease Resources RESOURCES > FEWER TREATMENTS RESULTING FROM IRA PRICE CONTROLS 11/12/24 Lumanity's IRA Webinar Series - Part 2: IRA Impact on Innovation in Drug Development Press Release Case studies highlight peril to treatment advances across several disease states Fact Sheet Anticoagulants Fact Sheet Autoimmune Diseases Fact Sheet Diabetes Fact Sheet Mental Illness Fact Sheet Rare Cancers