Search Results

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. 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 > 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.

April 18, 2025 (Washington, D.C.)  The Partnership to Fight Chronic Disease released the following statement on behalf of PFCD policy adviser and former Representative Larry Bucshon, MD, in response to the Trump Administration’s executive order: “With one signature, President Donald Trump potentially did more for U.S. health care than any another person in the Oval Office might in a year. The executive order he signed this week showed great pulse and clear direction on several issues influencing the quality and accessibility of patient care, many of which directly impact my older friends on Medicare. “As a cardiothoracic surgeon, I appreciate medicine’s power to improve health outcomes. I also recognize the many environmental and lifestyle factors that exist outside a medical facility. How closely patients adhere to their drug prescriptions at home is among those external factors. Small-molecule drugs— the pills, tablets, and capsules that occupy medicine cabinets— provide convenience and accessibility for patients and caregivers managing one or more chronic conditions, which is a significant part of our population. It is vital to protect these innovation pipelines. “Ending the pill penalty by aligning small molecules with biologics’ 13-year track until price control eligibility, as the President has suggested, would reinvigorate small molecule research and development. The President also rightly affirmed the importance of intellectual property rights to America’s health care ecosystem. “I also commend the President’s call for greater transparency. By confronting these challenges head-on, the President has charted a path that, in no uncertain terms, puts patients first.” ###

Successfully addressing the true cost drivers in health care requires policies that recognize the promise of small molecules and stop the perils of PBMs April 16, 2025 (Washington, D.C.) The Partnership to Fight Chronic Disease (PFCD) released the following statement in response to President Donald Trump’s executive order that, in part, called for fairness in the treatment of both small molecule medicines and biologics in the context of the Medicare Drug Price Negotiation Program: “PFCD emphasizes the significance of the Trump Administration’s most recent executive action, laying down a marker of support to address a critical imbalance created by the Inflation Reduction Act (IRA) and calling for congressional action to fix it.  As the President acknowledged, the so-called “pill penalty” serves as a significant deterrent for the development of the pills, tablets, patches, and other small molecule medicines on which almost anyone living with a chronic disease relies to improve their health. Amending the IRA to equalize the eligibility timeline for price-setting both small molecule and biologic medicines at 13 years is a critical step in improving overall health outcomes and quality of life for the millions of Americans living with one or more chronic conditions, while at the same time ensuring America remains at the forefront of medical innovation. PFCD remains committed to working with Congress and the Administration on these critical health care issues and calling for passage of the Ensuring Pathways to Innovative Cures (EPIC) Act, which would fix the pill penalty. “PFCD also commends the Trump Administration for its recognition of the role Pharmacy Benefit Managers (PBMs) play in raising the costs of prescription drugs for consumers, employers, and insurers, including Medicare. PBMs impede patient access to the medicines their health care providers recommend and put significant risk on medication adherence which is imperative for people living with chronic conditions. We look forward to working with the Trump Administration and Members of Congress to adopt PBM reforms that facilitate patient access, pharmacy choice, and lower costs for all stakeholders.” ###

PFCD Chair Ken Thorpe & the Partnership to Fight Chronic Disease (PFCD) invites you to join us for this hybrid event focused on an array of issues related to prevention and treatment of costly chronic conditions. RSVP HERE Questions? Jennifer.Burke@fightchronicdisease.org