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December 5, 2025 (WASHINGTON, D.C.)  The Partnership to Fight Chronic Disease (PFCD) released the following statement in response to the introduction of the Pharmacy Benefit Manager (PBM) Price Transparency and Accountability Act:   “The Partnership to Fight Chronic Disease (PFCD) applauds Senate Finance Committee Chairman Mike Crapo and Ranking Member Ron Wyden for introducing the bipartisan Pharmacy Benefit Manager (PBM) Price Transparency and Accountability Act , which aims to fix market distortions and lower prescription drug costs for patients and taxpayers. For the more than 190 million Americans living with one or more chronic conditions, reforms that increase transparency, fairness, and accountability among PBMs are essential to improving access and affordability.   “Efforts to make America healthier require policymakers to address misaligned incentives that allow PBMs to profit while patients face rising premiums, deductibles, and coinsurance at the pharmacy counter. By delinking PBM compensation from list prices and requiring that Medicaid payments flow more directly to pharmacies and dispensing providers, this legislation moves the system closer to one that prioritizes patients over middlemen.   “This legislation’s provisions to strengthen reporting, audit authority, and ‘any willing pharmacy’ contracting will help safeguard independent and rural pharmacies that many people with chronic conditions rely on for timely access to medicines and counseling. These steps, combined with greater oversight of PBM practices across Medicare and Medicaid, reflect the kind of bipartisan, patient-centered solutions PFCD has consistently championed to protect access while addressing affordability.   “Achieving better health outcomes requires a comprehensive approach that pairs prevention with reliable access to evidence-based treatments. Greater transparency when it comes to cost and access for prescribed treatments is essential for people living with chronic conditions and the providers supporting their care. This bill is an important step in that direction, and PFCD urges Congress to swiftly advance this legislation.”

More than half of American adults manage multiple chronic conditions . The prevalence is enough to strain the U.S. healthcare system and challenge patient access to new treatments. To compound the issue, pharmacy benefit managers (PBMs) and others siphon nearly half of every dollar spent on brand-name drugs, driving up costs for patients. Reform for how Americans access drugs is a primary topic in Washington. Of the two trending options on the table, only one puts patients first. PBM reform and most favored nation (MFN) pricing have gained significant recent traction. One key distinction is the former directly confronts the issue at hand by mitigating the influence of middlemen, whereas MFN imports drug prices set by foreign governments with a riskier range of potential outcomes. Any solution must prioritize patient access. Today, PBMs wield enormous influence over which medicines patients receive and what they pay. Their rebate-driven models, formulary barriers, and use of affiliated group purchasing organizations (GPOs) often prioritize financial return over clinical need. For people managing chronic disease, these practices can delay effective therapy and inflate out-of-pocket costs. PBM reform seeks to restore patient-centered access by curbing opaque pricing practices and ensuring negotiated savings reach patients. By reducing pricing distortions created by PBMs and increasing transparency, reform targets the systemic barriers that most consistently raise costs for patients. In the interim, direct-to-patient (DTP) programs can offer short-term relief. They allow patients to bypass intermediaries altogether and buy medications directly from manufacturers at a transparent, often significantly discounted, price. For some, especially those with high deductibles, limited coverage or no insurance, DTP would address unpredictability at the pharmacy counter and minimize surprise costs. In time, there could be an opportunity to expand DTP, integrating insurance coverage and enabling broader participation. MFN moves the U.S. in another direction. By tying drug prices to those set in foreign markets, MFN would introduce volatility that would limit patient access to new medicines. By undermining the conditions that support steady development, testing, and rollout of new therapies, MFN would jeopardize access for patients who rely on new therapies to manage complex or rare conditions. The pursuit of parity with other nations can come at the expense of timely care for Americans who need it most. Across Europe and Canada, patients routinely face delayed and constrained access to medicines due to government price-setting practices. In Canada, a 2021 Fraser Institute analysis found newly approved therapies often arrive over a year later  than their U.S. equivalents, shrinking treatment windows for people with chronic disease. In the U.K., rare disease patients are frequently denied access  to transformative treatments when the National Institute for Health and Care Excellence deems them not to be “cost-effective”. It would be precarious to address affordability in the U.S. by treating countries with major access concerns as the rubric. It’s also clear from those experiences that we cannot simply adopt foreign prices and still enjoy U.S.-level access to medicines or have the same pace of innovation. PBM reform provides a clearer path forward. While no single solution can fully address the challenges that Americans with chronic disease face, any solution should strengthen the connection between patients and their prescribed therapies, ensuring affordability and consistent access.

Becoming a new mother is often described as one of life’s most extraordinary experiences. Yet for many women, the period following childbirth is also marked by profound physical, emotional, and systemic challenges. As chronic diseases become increasingly common contributors to maternal complications and mortality, understanding and addressing the broader social determinants of health is essential to addressing the realities, especially those facing Black mothers and their babies. Black women and mothers face a disproportionately high risk for a range of cardiovascular conditions. According to the American Heart Association , Black women experience higher rates of hypertension, heart failure, peripartum cardiomyopathy, and stroke, often beginning earlier in life and progressing more aggressively than in other groups. Added elements like chronic stress, limited access to preventive care, and inadequate postpartum follow-up intensify these risks during pregnancy and motherhood. The Partnership to Fight Chronic Disease continues to shine a light on the disproportionate impact of chronic disease on maternal health outcomes. On December 3 rd , PFCD joins California State Senator Dr. Akilah Weber Pierson for another follow up event focused on supporting the health and wellness of Black mothers. This gathering will bring together clinicians, community leaders, researchers, and advocates to discuss how chronic disease management and equitable care access can transform maternal and infant outcomes. A Crisis Rooted in Inequity Black women in California are more than four times more likely  to die from pregnancy-related causes than white women. Nationwide, they are nearly three times more likely  to experience maternal mortality. These disparities cannot be separated from the chronic diseases that disproportionately affect Black women—conditions that often go undiagnosed, undertreated, or unsupported before, during, and after pregnancy. Black women are: 60% more likely  to have high blood pressure At significantly higher risk for diabetes and heart disease More likely to develop gestational diabetes , increasing future risk of Type 2 diabetes More likely to experience worsening hypertension postpartum , raising long-term heart disease risks These chronic conditions can complicate pregnancy, delivery, and recovery, yet the barriers Black women face in accessing consistent, culturally competent care often make managing these problems deeply challenging. Health outcomes are shaped by far mor e than biology. For Black mothers, the following factors play an outsized role in health outcomes : Limited access to high-quality healthcare Insurance gaps Financial stress Under-resourced neighborhoods Lack of culturally competent providers Distance from health facilities Collectively, these systemic inequities not only make it harder to receive timely and appropriate care but more broadly create an environment where Black women must not only adapt to life with a newborn but simultaneously navigate chronic conditions without the level of support they need and deserve. Chronic Disease: A Driving Force Behind Maternal Mortality The connection between chronic disease and maternal health outcomes is stark. From 2020 to 2021 alone, the U.S. maternal mortality rate rose by more than one-third. The rate for Black mothers was more than twice that for white mothers. Even before the pandemic, chronic diseases accounted for half of all maternal deaths  in the United States. They remain the fastest-rising cause of maternal mortality today. In San Diego County, Black infants are nearly three times more likely  to die during their first year of life and are 60% more likely  to be born premature—further demonstrating how chronic disease, inequity, and maternal health intertwine. Sickle cell disease, which disproportionately affects Black women, carries its own heightened risks and women with sickle cell are more likely to deliver younger, live in under-resourced communities, and experience stillbirth. PFCD remains committed to raising awareness, advocating for systemic change, and pushing for policies that eliminate racial discrimination in healthcare and address the social determinants that produce harmful disparities. To meaningfully reduce disparities and improve outcomes, we must: 1. Invest in culturally competent and accessible care. 2. Strengthen chronic disease prevention and management. From early screening to long-term management, prioritizing heart health, diabetes prevention, blood pressure control, and sickle cell care is essential. 3. Expand access to mental health services. Support must be affordable, stigma-free, and rooted in community understanding. 4. Address social determinants of health. Transportation, childcare, housing stability, nutrition, and economic security directly shape maternal well-being. 5. Drive policy based on equity and evidence. ALL mothers deserve not only survival but the opportunity to thrive. By prioritizing maternal health, addressing chronic disease, and confronting the systemic barriers that shape outcomes, we can build a future where every mother has the care, support, and dignity she deserves.

November 26, 2025 (WASHINGTON, D.C.)  The Partnership to Fight Chronic Disease (PFCD) released the following statement in response to the Centers for Medicare and Medicaid Services’ (CMS) announcement of the “maximum fair prices” for the 15 drugs selected for Medicare price-setting in 2027 under the Inflation Reduction Act (IRA): “Nearly 88% of U.S. adults aged 65+ rely on prescription medicines monthly, with 40% using five or more. When considering how best to improve overall health outcomes in the U.S., Medicare beneficiaries need robust access to innovative treatments. However, the IRA’s price-setting program and broader changes to Medicare Part D risk that access going forward. A recent analysis shows  that in response to the IRA, Part D plans are increasing out-of-pocket expenses and formulary barriers for beneficiaries, jeopardizing access for those who need treatment most.​ “The Part D drugs selected for Initial Price Applicability Year (IPAY) 2027 reflect significant cost and coverage implications for Medicare beneficiaries. Many of these medicines are already highly rebated, with seven of the 15 chosen medications having average estimated rebates exceeding 40% . These drugs were utilized by approximately 5.3 million Part D patients between November 2023 and October 2024, accounting for an average of less than $650 a month in Medicare spending per beneficiary – before rebates – during that period. Yet changes under the IRA have led plans to charge patients coinsurance instead of fixed copays, compounding out-of-pocket burdens for patients. “It is clear that the IRA’s price-setting approach to make drugs ‘more affordable for seniors’ will not deliver meaningful savings to patients, with insurers and pharmacy benefit managers (PBMs) merely shifting costs while continuing to profit. Instead of looking for ways to double-down on this approach, PFCD calls on policymakers to focus their attention on bipartisan solutions that protect patient access while also addressing affordability for patients themselves. This includes requiring PBMs to pass on negotiated savings to patients at the point of sale, delinking PBM compensation from the list price of medicines, prohibiting exploitative tactics like copay accumulators, and never allowing discriminatory measures such as the quality-adjust life year (QALY) to shape pricing and coverage decisions in the U.S.   “Making lower health care costs a reality for people managing one or more chronic conditions is not just a matter of price but also access to prescribed medicines that support better health outcomes. PFCD will continue to call attention to how the IRA’s price-setting is failing American seniors. Commonsense reforms that protect patient access must be a priority.”

November 25, 2025 (WASHINGTON, D.C.) The Partnership to Fight Chronic Disease (PFCD) issued the following statement in response to the introduction of the Alzheimer’s Screening and Prevention (ASAP) Act, legislation co-sponsored by Senators Susan Collins (R-ME), Catherine Cortez Masto (D-NV), Shelly Moore Capito (R-WV), Mark Warner (D-VA), and Representatives Vern Buchanan (R-FL) and Paul Tonko (D-NY) to empower Medicare to cover FDA-approved blood-based biomarker tests for the early detection of Alzheimer’s disease and other dementias.   "We applaud Sens. Collins, Cortez Masto, Capito, and Warner and Reps. Buchanan and Tonko for their leadership in advancing this bipartisan, bicameral bill to help make the latest Alzheimer’s early detection tools more widely accessible to patients. The societal burden of this disease is staggering; more than 7 million Americans are currently living with Alzheimer’s and  in 2025 alone, the total cost of dementia in the U.S. will hit $781 billion . Dementia requires direct medical and long-term care costs for families, as well as approximately 6.8 billion hours  of unpaid caregiving by family members and friends to people living with these diseases.   This bill represents a crucial step toward ensuring these tools reach the patients who need them most. Detecting Alzheimer’s disease at earlier, more treatable stages gives patients and families critical hope. The urgency cannot be overstated. Each day, an estimated 3,000 people with Alzheimer's progress beyond the reach of early-stage treatment.    “Recent medical advances have shown remarkable promise in detecting signs of Alzheimer’s even before symptoms appear. The FDA's approval of breakthrough blood-based biomarker testing earlier this year provides healthcare professionals with a less invasive and more accessible tool to detect Alzheimer's at early stages.   “However, these diagnostic innovations mean nothing if patients cannot also access the latest treatments for Alzheimer’s disease. Medicare's current approach of restricting access to FDA-approved Alzheimer's therapies through cumbersome coverage with evidence development (CED) registries creates dangerous delays. Such measures that condition coverage on research participation create administrative quagmires that prevent timely treatment, a dangerous precedent for patient access across chronic diseases.   “PFCD urges Congress to swiftly advance the ASAP Act and calls on policymakers to continue working to streamline access to treatments already deemed safe and effective.” ###

The U.S. spends more on healthcare than any other nation, but that doesn’t mean it overspends on medicine.   According to the new IQVIA  Drug Expenditure Dynamics 2000 - 2022  report, 15% of America’s overall healthcare spending is allocated to drug expenditures. That percentage was also the average among the 12 developed countries IQVIA studied.   This means the U.S., when accounting for its overall healthcare spending, is not an outlier in how much it spends on drugs. By comparison, IQVIA found that Japan (20%), South Korea (19%) Spain (17%), Italy (17%) and Australia (16%) commit a greater share of healthcare spending to drugs.   This context is essential for shaping efforts to lower healthcare costs by reducing the prevalence and burden of chronic disease in America. For example, reducing people's access to treatment may lower costs in the short-term, but increases the burden of disease and long-term costs. Chronic conditions, which include heart disease, cancer, and diabetes, are the leading cause of death in the U.S. and account for 90% of overall healthcare spending. Improving population health is therefore one of the most effective long-term strategies for lowering healthcare costs.   It is true that the U.S, despite affordable generics, spends more on drugs than any other country in terms of absolute spending. But we also spend more overall and on specific healthcare services.   U.S. Drug Spending: Growth with Value While total pharmaceutical expenditures continue to rise in absolute dollars, much of that growth reflects medical  advances, not price inflation.   The U.S. prescription drug market reached roughly $487 billion in net spending in 2024, a 11.4% increase from 2023  amid new therapies for obesity, diabetes and oncology. Yet medicine price growth has remained flat or declined slightly, meaning utilization and innovation, not higher prices, are driving spending.​    When viewed in this context, medicines are a comparatively stable component of the system. Over the past decade, total U.S. drug spending has averaged only 2% annual growth when accounting for rebates and generics entering the market.   Despite that landscape, efforts to enact foreign-reference drug pricing in the U.S. are on the rise. The approach seeks to mandate that manufacturers provide American patients the same prices available in peer nations. While well-intentioned, the approach misdiagnoses the root cause of healthcare cost growth.​   Medicine prices are just one piece of the puzzle, and they’re not the fastest-growing piece. Hospital care, administrative overhead, and the burdening prevalence of chronic disease spending drive far more cost. Policies that focus narrowly on capping drug list prices risk limiting patient access to existing treatments and losing out on innovation for new treatments, especially for therapies that prevent complications and reduce hospitalizations over time.​   Other nations with lower drug prices accept trade-offs, including slower access to new therapies and fewer treatment options. Importing their pricing systems into the U.S. won’t guarantee lower costs for consumers. Significant rebates and discounts taken by pharmacy benefit managers, for example, never reach patients at the pharmacy counter.   A Smarter Way Forward If the goal is meaningful cost reduction, the solution isn’t blunt price-setting.   It’s smarter spending and lowering the need for avoidable healthcare services by preventing and reducing the burden of chronic diseases.   That means building value-based frameworks where payment reflects results, not volume. Medicines often prevent costlier hospital interventions, reduce ER visits, and save lives. Policies should seek to expand access to medicines to achieve system savings, not undermine them.

Nov. 12, 2025 (WASHINGTON, D.C.)  The Partnership to Fight Chronic Disease (PFCD) released the following statement in response to the Centers for Medicare & Medicaid Services’ (CMS) announcement of a new demonstration through the CMS Innovation Center, the GENErating cost Reductions fOr US Medicaid (GENEROUS) Model: “Given PFCD’s well-documented opposition to importing foreign price controls, we have strong concerns about CMS’s proposed GENEROUS Model, which would tie Medicaid prescription drug pricing to foreign ‘Most Favored Nation’ (MFN) benchmarks. Adopting prices from foreign countries means adopting the discriminatory cost-effectiveness standards those countries use to set prices and determine patient access, including the Quality-Adjusted Life Year (QALY). Each of the eight countries this model will use to calculate the MFN price —  the United Kingdom, France, Germany, Italy, Canada, Japan, Denmark, and Switzerland —  use QALYs  to inform coverage and pricing decisions. The QALY-based frameworks used in these nations have frequently led to treatment delays and care rationing for vulnerable populations, including older adults, individuals with disabilities, families navigating rare diseases and those with multiple chronic diseases. The adoption of such a strategy prioritizes government savings at the expense of patient-centered care and may, in fact, worsen access for Medicaid beneficiaries who already pay little or no cost-sharing for their medicines. “As the Trump administration continues to pursue MFN drug pricing proposals, we remain concerned about the impact these policies will have on people living with one or more chronic conditions. MFN poses a significant risk to patient access to prescribed treatments in the short-term and future innovations down the road. The adoption of foreign price controls will only serve to undermine the progress achieved through American medical research and erode incentives for developing the next generation of therapies and cures here in the U.S. “PFCD has long supported the goal of improving affordability for people living with chronic disease, but we urge policymakers to reject foreign pricing models that will not meaningfully improve patient affordability or access.”

Medicare Open Enrollment starts this week and changes coming in 2026 warrant close consideration. Many will face fewer choices and higher costs, particularly for people who rely on traditional Medicare and purchase stand-alone prescription drug plans. Slightly less than half of Medicare’s 63 million beneficiaries enroll in traditional or fee-for-service Medicare (Parts A and B) compared to Medicare Advantage plans (Part C). Among rural beneficiaries, traditional Medicare is particularly popular. Beneficiaries who prefer traditional Medicare purchase stand-alone Part D plans for their prescription drug coverage. Fewer Plans to Choose From The Centers for Medicare and Medicaid Services (CMS) just released new data, and here’s the headline: the Medicare Part D market is shrinking again in 2026. The number of standalone prescription drug plans (PDPs)   will drop by 22%  - from 464 in 2025 to 360 in 2026 The number of Medicare Advantage plans with drug coverage (MA-PDs, not including Special Needs Plans) will also fall by 9% , from 3,246 to 2,967 over the same period That means fewer choices for people shopping for drug coverage this fall. Some insurance companies are pulling out of the market, while others are cutting back on the types of plans they offer. Interestingly, one area that’s still growing is Special Needs Plans (SNPs)   - these are designed for people with certain health conditions or lower incomes, and they’ll increase by 20%  next year. That’s good news for people living with specific needs, including serious chronic conditions, for which SNPs are available . Why All the Changes? The Inflation Reduction Act made significant changes to Medicare Part D. Some of these changes will help beneficiaries manage out-of-pocket costs, including the new annual out-of-pocket cap ($2,100 in 2026) and the Medicare Prescription Payment Plan. Launched in January 2025, the Medicare Prescription Payment Plan  offers seniors with any Medicare Part D plan (including PDPs or MA-PDs) the option to break their out-of-pocket prescription drug expenses into monthly installments to avoid having to make large payments earlier in the year. However, other aspects of the IRA, like the drug pricing provisions, risk undermining the Part D program. In 2026, the Medicare Prescription Drug Price Negotiation program kicks in for the first ten prescription medicines selected for price-setting. How the program affects beneficiary costs at the pharmacy counter and the impact on access restrictions will be closely watched. Expect Higher Premiums Even though Medicare is trying to limit premium increases, many people will still see their monthly drug plan costs go up in 2026. For those not receiving low-income help , average premiums for standalone drug plans are expected to rise by about a third. According to a new analysis by Avalere : About 1 in 4 people  will see their drug plan premium go up by $30 or more per month Around 17%  will see little to no change Most people with Medicare Advantage drug plans (MA-PDs)  will still have a $0 drug premium , but about 16%  will see an increase of $10 or more Fewer Choices for Low-Income Beneficiaries If you get help paying for your drug plan through the Low-Income Subsidy (LIS) , your options are also narrowing. The number of benchmark plans  - the ones available at no extra cost - will dip slightly from 90 in 2025 to 88 in 2026. This erosion of choices continues an alarming decline in the options of LIS plans for low-income beneficiaries. In 2023, before passage of the IRA , there were 191 LIS plan options. In some states, that means people will have only one or two of these no-cost plans to choose or face picking a plan for which they must pay premiums. What This Means for You Bottom line? The 2026 Medicare open enrollment will involve fewer plans and higher premiums . If you’re on Medicare, it’s going to be more important than ever to review your plan during open enrollment this fall. Even if you’re happy with your current plan, take a few minutes to compare your options - you might find that your plan’s price or drug coverage is changing.

The Partnership to Fight Chronic Disease opposes the Trump administration’s “Most Favored Nation” drug pricing proposal because it would import international price controls that threaten patient access, adopt discriminatory metrics of value, pose ethical concerns and stifle U.S. medical innovation.  Leading voices from patient, provider, and other stakeholder communities are raising serious concerns about the impact of the “Most Favored Nation” pricing proposal on patient access in America:  *DOWNLOAD INFOGRAPHIC * Alliance for Aging Research :  “Just as worrisome, international reference pricing policies effectively endorse the use of discriminatory cost-effectiveness standards often used by other governments. Many countries likely to be referenced, such as the United Kingdom and Canada, make drug reimbursement and coverage decisions based on cost-effectiveness assessments that are measured by the quality-adjusted life-year (QALY). These assessments assign a financial value to the patients for whom a given treatment is intended. The Affordable Care Act banned the use of QALYs for coverage and reimbursement decision-making in the Medicare program.  “QALYs originated in the 1960s and have been used by the British government to ration health care for its National Health Service. If we embrace an MFN-type reference pricing policy, it means embracing health care rationing as well. This type of rationing in many European countries has not only resulted in access issues but has also translated into higher mortality rates for chronic diseases, such as cancer. ”  American Society of Clinical Oncology : “High drug prices in the United States must be addressed, but MFN would impose a nationwide, mandatory experiment on people with cancer and their providers that could significantly restrict patients’ access to care—without any evidence that it will actually cut care costs .” Asthma and Allergy Foundation of America :  “The U.S. health care system is complex, and pushing on one lever to reduce costs may unintentionally increase costs to patients by other mechanisms. Without addressing all of the root causes, policies like MFN risk reducing availability or shifting costs elsewhere in the system, which could delay access or limit options for patients. ” “...we are deeply concerned that the proposed Most-Favored-Nation (MFN) pricing framework—while well-intentioned—fails to address the underlying complexities of the U.S. drug pricing ecosystem and risks creating unintended consequences that could restrict access for patients who rely on life-saving medications.” Caregiver Action Network :  “People on Medicaid already have broad access to medicines at little to no cost-sharing. The MFN model could lead to cuts in Medicaid and reduced access to lifesaving treatments for vulnerable populations. ” Coalition of State Rheumatology Organizations : “CMS also acknowledged that ‘beneficiaries may experience access to care impacts,’ including difficulty finding  providers and extended traveling to seek care. These are alarming forecasts  about the future impact of these proposals if applied to Medicaid, which we believe should sufficiently deter members of Congress from advancing this proposal.” Council for Affordable Health Coverage : “Entering critical steps to enact budget reconciliation, Congress should focus on dismantling the drug price control regime that already exists in the U.S. health care system, such as those enacted by the Biden administration in the Inflation Reduction Act — not reinforce it with a European model. European price controls are controversial because they restrict access to treatment, promoting worse health outcomes that cost more. Replacing efforts to control fraud in Medicaid with controversial price controls will hold up progress on the budget bill and should be rejected by Congress.” Healthy Men : “Time and time again, across numerous market sectors, artificially setting prices using foreign reference pricing has been unsuccessful. And when applied to pharmaceuticals,  it could ultimately harm patients and undermine the administration’s important goal of ‘Making America Healthy Again’. ” Let My Doctors Decide : “MFN may appear to lower costs on the surface, but in reality, it imports price controls that could restrict access to life-saving therapies. Countries whose pricing models would be adopted under this proposal routinely deny or delay access to innovative treatments —this includes patients battling cancer and other chronic, complex conditions that need access to new and existing ground-breaking treatments.” National Minority Quality Forum : “The MFN model would encourage a standardization of treatment options, moving away from personalized medicine toward a more limited formulary of options that satisfy price constraints. This is especially concerning for a nation as diverse as the United States , which serves populations with widely varying health needs and often complex, co-occurring conditions” “While making medications more affordable is an admirable goal, applying this price control strategy may unintentionally harm the very patients it aims to help—not just the 77 million Americans on Medicaid, but potentially all Americans if expanded throughout our healthcare system.” Part B Access for Seniors and Physicians (ASP) Coalition : “Linking U.S. health care policy to other countries, that artificially suppress prices through access restrictions and subjective controls, would tie the hands of providers in the United States by narrowing and delaying access to available treatments due to market forces outside of their control. Moving forward with this MFN… would irrevocably change health care in the country by disrupting provider’s ability to deliver patient-centric care  and upending the future development of innovative medicines.” RetireSafe : “By giving other nations the power to effectively control Medicare prices, MFN will decrease access to treatments seniors rely upon. Furthermore, altering the Medicare market could have unintended or unforeseen side effects on senior treatments more broadly, as well as premium costs, and mirroring smaller socialized healthcare markets  would only upend a working program and cause larger cost issues in the long term. ”  Former Congressman Michael Burgess, MD in Dallas News : “Those countries’ socialized health care systems achieve their lower prices, in large part, by negotiating prices which results in routinely delaying or denying access to new therapies. Older adults, people with disabilities, and patients with complex or rare conditions often lack access to lifesaving medicines in those systems. Adopting other countries’ prices would mean far fewer medical advances, and ultimately lead to the same access restrictions that patients face abroad. ” Former Congressman Larry Bucshon, MD in Indy Star : “ If it takes effect, companies will simply stop investing in most new drug research. It's simple economics — kill the potential return, and you kill the risk-taking too.  That'd come at a massive human cost.  New drugs have been responsible for more than a third of the decline in cardiovascular deaths since 1990. They've turned certain cancers from imminent death sentences into manageable, even curable, conditions. Now we're seeing promising treatments for obesity, ALS, and rare genetic disorders. Imagine telling families that future breakthroughs won't be coming — because we chose to import foreign price controls .”

Childhood health lays the foundation for lifelong health, influencing whether adults thrive or struggle with preventable disease. A solid foundation in childhood creates healthier populations, stronger communities, and a more resilient nation while decreasing the burden on the U.S. health care system. Using new research that will be featured in a broader analysis of medical and economic costs associated with chronic disease among adults, the Partnership to Fight Chronic Disease created a one-page fact sheet  to capture the current state of health for US children and what lifestyle and treatment improvements could mean. Data shows that the U.S. is projected to spend $1.15 trillion over the next 15 years on chronic diseases occurring during childhood, such as asthma, cancers, and obesity. This burden not only disadvantages children and their families, but adds costs for hospitals, schools, and workplaces alike. Prevention, better management, treatment advances, improved adherence and enhanced coverage all represent opportunities that could cut these costs by more than half while saving lives . Children today face personal health challenges unique from ones their parents faced. For example, technology such as video games and social media provide mental stimulation for children that discourage physical activity. Given the prevalence of screen time, it’s no surprise that less than half of high school students meet activity guidelines. Policies that encourage physical activity are increasingly important in the fight for better health, particularly for children. Social media also heightens risks of mental illness. One in five adolescents has a diagnosed mental or behavioral condition, most often anxiety. Among those needing mental health support, more than half report difficulty accessing essential treatment or counseling services. Research and development to drive improvements in medical technology and other tools to prevent and manage chronic disease in children remain essential. Advances in childhood cancer treatments already show what is possible with the potential to save more than 10,000 additional lives. Innovation in prevention and chronic disease management could avert millions of future cases. Policymakers have the opportunity and the responsibility to act. Prioritizing children’s health through sustained investment in research, development and innovation will save lives, reduce costs, and strengthen America’s future. Childhood health is not merely about today. It’s about every stage that follows.

Sept. 11, 2025 (WASHINGTON, D.C.) The Partnership to Fight Chronic Disease (PFCD) has released the following statement in response to the Make Our Children Healthy Again Strategy report. “More than 40% of U.S. children and adolescents have at least one chronic condition, a concerning trend that deserves data-driven research and recommendations. The Make America Healthy Again Commission correctly highlights that improving nutrition, increased physical activity, reduced stress, and curtailing exposure to toxins are essential to health promotion for children. Given the desire to reduce exposure to toxins, we were troubled to see no mention of tobacco use and nicotine addiction prevention and cessation anywhere in the report. Tobacco use remains a major preventable cause of chronic disease, and nearly 90 percent of adults who smoke started before they turned 18 . “Even more concerning is the Commission’s emphasis on ‘overmedicalization’ as a ‘driver behind the rise in chronic disease,’ imprecisely calling it a ‘concerning trend … often driven by conflicts of interest in medical research, regulation and practice.’ Medicine is not the enemy of prevention; it is its partner: ·         One in 15 U.S. children has asthma , and inhalers and other therapies keep symptoms under control and prevent hospitalizations. Preventing exposures to triggers is important to avoid asthma attacks but is not enough for many without the support of medicines that prevent attacks and rescue medicines needed during one. ·         For the 300,000 children and adolescents living with type 1 diabetes , insulin is not optional but life-sustaining. ·         Advances in pediatric oncology have raised the five-year survival rate for childhood cancers above 85% , a direct result of research and treatment. "Getting regular exercise and spending time outdoors certainly do have beneficial effects on stress levels and mental wellbeing. However, to suggest that those activities alone can prevent and treat diagnosed mental illnesses diminishes the reality of these diseases, reinforces stigmas that prevent people from seeking treatment, and risks the health of children and adolescents suffering from mental illnesses. Medical care does not create chronic disease, but rather it allows children to live longer, healthier lives. Suggesting otherwise risks stigmatizing families who depend on these treatments and undercutting the value of efforts focused on delivering innovative treatments and cures to those living with unmet needs. “Any effort to make America healthy should prioritize prevention while also leveraging current and future treatments to better manage the existing toll of chronic disease across the U.S. The best path forward is to invest in healthier environments while strengthening research and health care that saves children’s lives. A comprehensive approach to children’s health must value both prevention and medicine.”

August 1, 2025 (Washington, D.C.)  The Partnership to Fight Chronic Disease (PFCD) issued the following statement in response to President Trump’s most recent efforts to impose “Most Favored Nation” (MFN) drug pricing, which poses considerable risks to patient access, particularly to people living with one or more chronic diseases. “More than one in two adults in the U.S. lives with at least one chronic condition and nearly one in three live with two or more chronic conditions. As such, chronic diseases are the primary driver of health care costs—accounting for 90 cents of every dollar we spend on health care in this country. The burden of chronic disease is clearly one of the costliest challenges we face as a nation and must be a top priority for policy reform. “With that top of mind, PFCD   strongly opposes the Administration’s latest efforts to call for MFN pricing and warns that tying U.S. drug prices to foreign price controls would limit patient access to life-saving treatments, stifle medical innovation, and disproportionately harm those with chronic conditions. “While intended to reduce drug prices, an MFN policy would import foreign price controls from countries that use discriminatory pricing measures like the quality-adjusted life year (QALY) to ration health care. These types of cost-effectiveness measures systematically devalue the lives of seniors, people with disabilities, and those with chronic diseases to deny them access to the treatment their doctors recommend. “Added concerns about how MFN policies would negatively impact people living with chronic disease include: Delays and Denials of Care: Countries the MFN policy seeks to emulate routinely ration care, leaving patients waiting years for access to innovative treatments, if they ever get access at all. Ethical Risks of Foreign Price Controls: MFN would allow foreign governments to dictate what treatments are available to American patients, undermining patient and provider choice. Provider Reimbursement Cuts: MFN’s slashing of reimbursement rates would force providers, particularly in rural and underserved communities, to reduce or eliminate participation in public health plans, further shrinking access for vulnerable populations. Stifling U.S. Medical Innovation: Pegging U.S. prices to foreign benchmarks erodes incentives to develop the next generation of cures for cancer, Alzheimer’s, and other chronic diseases. Threats to Personalized Medicine and Equitable Care for All Who Need It: MFN prioritizes cost over care, hitting minority populations and patients with complex chronic conditions hardest by limiting treatment options. “PFCD urges policymakers to reject MFN and pursue more patient-focused solutions to address rising out-of-pocket costs, like reining in PBMs and insurers. To truly make America healthy, policymakers should seek to expand access to affordable medicines without compromising care quality, innovation, or patient choice.” ###

July 31, 2025 (Washington, D.C.) The Partnership to Fight Chronic Disease (PFCD) has issued the following statement in response to the Senate HELP Committee hearing, “Making Health Care Affordable: Solutions to Lower Costs and Empower Patients”: “The Senate HELP Committee did the American public a tremendous service when guiding today’s informative and eye-opening discussion. We appreciate the leadership of Chair Cassidy, Ranking Member Sanders, and all members of the Committee for addressing the pressing challenges of cost and access in our health care system. “The hearing underscored the growing burden of chronic disease and the structural barriers that make it difficult for patients to manage their health effectively. Conditions such as cancer, diabetes, heart disease and depression affect tens of millions of Americans. For many, coverage decisions, shifting formularies, and limitations on pharmacy access create delays in care, financial stress, and worsened health outcomes. “The Committee’s focus on the role of intermediaries, including pharmacy benefit managers and insurers, is especially important. The impact of opaque pricing and coverage practices reaches across every community, and the need for greater accountability is clear. “We welcome continued collaboration on policies that prioritize the needs of people living with chronic conditions. A stronger commitment to transparency, affordability, and continuity of care will help ensure that individuals can manage their health without encountering unnecessary obstacles. “We thank the Committee once again for convening this important hearing.”

There is never a wrong time to talk about mental health. For millions of Americans, the challenge exists daily, shaping how they connect and cope with their surrounding environment. Here in July, the conversation is especially timely: It is National Minority Mental Health Awareness Month. Mental health, like other chronic conditions, places a disproportionate burden on historically marginalized communities. Higher rates of trauma, discrimination, and chronic stress compound the prevalence and severity of mental illness. Meanwhile, systemic barriers can delay diagnosis and restrict access to care. The Make America Healthy Again Commission recently recognized mental health as essential for national health. This is an important distinction to explore. For nearly two decades, the Partnership to Fight Chronic Disease has observed how mental health influences outcomes across care. People managing diabetes, heart disease or asthma may struggle more to pursue or adhere to treatment when depression or anxiety is left untreated. Of course, acknowledgment is not enough. The MAHA Commission must follow up with recommendations that appropriately recognize high-risk groups. Young people at large, for example, are subject to immense pressure. School demands, social isolation, and online stress contribute to the crisis. Suicide is one of the three leading causes of death for children, adolescents and adults between ages 10 and 24. In rural areas, the situation is especially urgent. Rural residents experience higher rates of depression and rates of suicide relative to Americans in urban communities. Limited access to care further exacerbates the issue. Not only do rural areas have 20% fewer primary care providers than urban areas, but 65% of rural counties lack a single psychiatrist and 95% don’t have a pediatric psychiatrist. Telehealth could help fill the void, but one in three rural homes lacks the requisite internet connection. Risks are also high for LGBTQ+ youth and youth of color. From 2007 to 2020, the suicide rate among Black youth ages 10 to 17 rose by 144%. Teens who identify as gay, lesbian, or bisexual are more than three times as likely to consider suicide than their heterosexual peers. These numbers reflect a system that has failed too many for too long. PFCD understands the opportunity at hand to share practical recommendations as well as the importance of getting the messaging’s language right. Some phrasing in the MAHA Report risks reinforcing outdated, harmful myths, such as that therapy “encourages rumination,” the suggestion that parents or schools are to blame, or that medication and counseling are signs of weakness rather than valid treatments. When mental illness is framed with blame or stigma, people stay quiet. Likewise, language within the MAHA Report supported the notion that depression and other mental illness is over-treated among adolescents. Research says otherwise. According to the National Institute of Mental Health, only 40.6% of U.S. adolescents with a major depressive episode received treatment — and only 44.2% who suffered a major depressive episode with severe impairment. Given the mental health crisis in youth, our greater concern is under-diagnosis and under-treatment of mental illness, particularly among underserved and marginalized communities. It can be counterproductive to broadly stigmatize treatment for children in need of behavioral and medical intervention, including access to effective medications when appropriate. Mental health should be embedded in every effort to modernize care. That means better infrastructure, expanded telehealth, more trained providers, and full parity for insurance coverage. The Commission is on the right track to recognize mental health as a chronic mental condition deserving of parity in care and coverage. PFCD stands ready to help advance the momentum. There is never a wrong time to talk about mental health. There is no better time than now to act.

By Candace DeMatteis, PFCD Policy Director Alzheimer’s disease is a devastating fatal disease, causing progressive damage that steadily erodes memory, thinking, and daily functioning. Alzheimer’s is the most common cause of dementia – an overall term for a group of neurological conditions affecting cognition, memory, communication, problem-solving, and concentration – that involves specific brain changes, including the excessive accumulation of the protein beta-amyloid and tau proteins. Today, approximately  7.2 million Americans  age 65 and older are living with Alzheimer’s. The societal burden of this disease is staggering; in 2025 alone, the total cost of dementia in the U.S. will hit  $781 billion . Dementia requires direct medical and long-term care costs for families, as well as approximately 6.8 billion hours of unpaid caregiving by family members and friends to people living with these diseases.  Fortunately, recent and ongoing research has shown promise. Medical progress has given us an opportunity to slow disease progression – and one day, could help do so even before symptoms appear. Yet despite the growing promise and treatments currently available to slow the disease, Americans battling Alzheimer’s continue to face enormous hurdles that block access to timely, effective care. These challenges begin with delayed diagnoses and extend through treatment, with disproportionate impacts on underserved communities. One of the most significant barriers today stems from Medicare’s decision to restrict access to FDA-approved Alzheimer’s therapies by requiring enrollment in  cumbersome coverage with evidence development (CED) registries . While meant to support research, conditioning Medicare coverage on participating in research creates administrative quagmires. For patients, their loved ones and caregivers these delays are more than just frustrating – they’re dangerous. Each day, an  estimated 3,000 people with Alzheimer’s  may progress beyond the reach of early-stage treatment. The process patients and their physicians must navigate --ranging from an often lengthy journey to diagnosis to insurance hurdles all along the way -- highlights the added and unnecessary barriers to care. This approach not only threatens current access but sets a precedent for future therapies, potentially deterring innovation and investment in the Alzheimer’s space. It’s time for policymakers to act. Washington can clear the path for Alzheimer’s disease. We must streamline access to treatments already deemed safe and effective .  It’s time to shift the focus from red tape to real solutions – for the millions of Americans who can’t afford to wait.

More than 40% of U.S. children and adolescents have at least one chronic health condition , such as asthma, allergies, obesity, and behavioral or learning challenges. In a recent 73-page report , the Make America Healthy Again (MAHA) Commission confronted the growing crisis, spotlighting underlying challenges like poor diet, environmental exposures, increased screen time, and a lack of physical activity. The Partnership to Fight Chronic Disease (PFCD) welcomes this focus and emphasis on prevention. But to truly maximize the moment and achieve long-term improvements, recommended solutions must be rooted in science and facts, representativeness, and real-world feasibility. Below are five key takeaways from the MAHA Report — along with PFCD’s perspective on where it hit the mark and where elaboration or clarification is needed. 1.      Ultra-Processed Foods (UPFs) Pose Significant Challenges   The report calls out poor diet — particularly the prevalence of UPFs in American diets — as a leading driver in pediatric chronic illness. It notes that nearly 70% of children's calories come from UPFs, which are heavily processed products linked to obesity, diabetes, and metabolic dysfunction.  PFCD agrees that improving the American diet across all ages presents a significant opportunity to improve health. But the report oversimplifies the problem, ignoring key drivers like food affordability and access exacerbated by aggressive advertising. To shift eating habits at scale, policymakers must confront food deserts, invest in nutrition education, and make healthy options accessible and affordable for all families. Recommendations as to the types of food are also important, as science supports plant-based diets and the consumption of whole foods. 2.      Environmental Chemical Exposure Is a Growing Concern   Concern over environmental toxins such as PFAS, phthalates, microplastics, and certain food additives was strongly iterated in the report. The MAHA Commission called for stricter research and regulatory action to reduce exposure. PFCD agrees that   environmental health plays a key role in chronic disease prevention. A narrow focus on individual chemicals, however, risks missing systemic issues that affect vulnerable communities most. Broader action is needed — from addressing pollution in marginalized neighborhoods to improving housing and infrastructure. Environmental factors must be part of the chronic disease conversation. 3.      Physical Inactivity and Chronic Stress Are Key Factors   The Commission identified increased screen time, sedentary behavior, and chronic stress as core contributors to the decline in children’s physical and mental health. We agree, these are serious concerns. But without tackling social determinants like unsafe neighborhoods, poverty, family stress, and a lack of recreational infrastructure, the report’s recommendations fall flat. Real solutions require in-depth analysis into the core causes of these behavioral changes. That way, strategic investment in schools, communities, and public spaces that support movement, connection, and resilience can be executed. 4.      Medical Treatment and Prescription Drug Use Are a Symptom, Not the Problem Prevention is paramount when it comes to health improvement, but preventive lifestyle interventions can and should coexist with medical interventions when needed to reduce health risks, treat disease, and prevent complications. The report warns of growing reliance on medications for children and adolescents, including antidepressants, antipsychotics, GLP-1s for obesity, and antibiotics, while questioning the safety and necessity of some treatments. Appropriate medication use is important in the fight against chronic illness, including risk reduction and complication prevention. The report’s treatment of topics like vaccines and mental health threatens to undermine proven and medically appropriate interventions that are vital to prevent and manage chronic disease. The report, for example, makes misleading assertions about the childhood vaccine schedule and FDA standards and approvals. Vaccines offer protection against a host of high risk, high impact infectious diseases and as such are foundational to the health of America’s children. Rather than casting unfounded aspersions against health care providers, medical journals, and both public and private scientific and medical experts, we must focus on opportunities to prevent mental illness and reduce stressors while expanding access to diagnosis and treatment for those suffering in order to make a difference. Stigma plays an outsized barrier to seeking care, particularly for adolescents. Criticizing parents and health care providers that seek and provide medical treatment will only exacerbate those issues instead of providing necessary supports to improve health outcomes. 5.      The Report Calls for a National Strategy - But Lacks Evidence and Nuance The Commission proposes a national strategy by August and outlines 10 areas for further research, covering everything from reduced-UPF diets to vaccine safety. Research must be unbiased, rigorous, transparent, replicable, and subject to peer review. The report omits several critical issues tied to childhood chronic disease, such as maternal health, gun violence, and substance use, while also citing non-nationally representative studies. Reputable scientific inquiry to identify policy solutions requires drawing conclusions from the evaluation of accurate peer-reviewed data. A meaningful national strategy must reflect the full spectrum of health determinants, grounded in the best available facts and analysis led by the data instead of a search for data points to support predetermined conclusions. The MAHA Report puts an urgent issue front and center: the health of America’s children is at risk. To truly address this crisis, urgency cannot come at the expense of broad input from medical, scientific, patient, and consumer communities. The lack of a public comment on the MAHA Assessment Report limited its accuracy and viability as a rallying cry for change. We strongly urge the Administration to allow for public review and comment on the MAHA Strategy Report that will follow. PFCD believes lasting progress demands a strategy that aligns science, policy, and lived experience. We’re committed to working with our partners, policymakers, and health and community advocates to ensure that any national strategy to address childhood chronic disease reflects both the complexity and opportunity of building a healthier future for all children.

May 15, 2025 (WASHINGTON, D.C.) – The Partnership to Fight Chronic Disease (PFCD) today issued the following statement in response to the House Energy and Commerce Committee’s advancement of reconciliation legislation: “Medicaid is a lifeline to millions of Americans living with chronic diseases and disabilities. PFCD shares concerns about the health and financial impacts of Medicaid cuts on America’s most vulnerable populations. We urge policymakers to tread carefully to avoid diminishing access to the care needed to improve health in America and on which 72 million Americans rely. “At the same time, we support several reforms included in the measure, including provisions increasing transparency, fairness, and accountability among pharmacy benefit managers (PBMs) in Medicaid and Medicare Part D, which enjoy bipartisan support. Reforms like this are essential to improving access and affordability for the more than 190 million Americans living with one or more chronic conditions. “We also support changes to provisions in the Inflation Reduction Act (IRA) that disincentivize researching FDA approved medicines for rare diseases. Inclusion of the Orphan Cures Act addresses that deeply problematic provision in the IRA and will encourage much needed research. “The House, however, left unaddressed another bipartisan IRA reform effort, the Ensuring Pathways to Innovative Cures (EPIC) Act. The EPIC Act would ensure that small-molecule medicines, often preferred by patients because they are easier to take at home, receive the same 13-year exemption timeframe as biologics under the Medicare Drug Pricing Program. Without that reform, the research and development shift away from small-molecule drugs will continue to the detriment of the millions of Americans with unmet medical needs. We encourage the Senate to include this needed reform when they take up the package. “PFCD strongly urges lawmakers to make progress on reform efforts by pursuing comprehensive, patient-centered solutions that promote health, protect access and coverage, enhance medical innovation, and ultimately reduce the burden of chronic disease on individuals, families, and the U.S. health care system.” ###

FULL VIDEO RECORDING

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. SYMPOSIUM PRE-READ DOCUMENT FULL VIDEO RECORDING Questions? Jennifer.Burke@fightchronicdisease.org

May 12, 2025 (Washington, D.C.)  The Partnership to Fight Chronic Disease (PFCD ) issued the following statement in strong opposition to President Donald Trump’s "Most Favored Nation" (MFN) executive order, which aims to tie prescription drug prices in the U.S. to those in foreign countries: “President Trump’s Most Favored Nation executive order mistakenly assumes that America can maintain its world-leading medical innovation while adopting the same foreign government price controls he has long criticized. The unintended consequences of this policy proposal would not only paralyze research, development, and innovation in America but would cause disruption across the U.S. health care ecosystem. Threatening access to lifesaving medicines and discouraging the discovery of breakthrough treatments, especially for millions living with one or more chronic conditions, seems quite counter to efforts aimed at making America healthy now or in the future. "If implemented, this executive order would effectively import the very systems of government intervention that stifle innovation and restrict access abroad. It would have the same harmful impact here at home, undermining progress in treating chronic conditions, like diabetes, cancer, heart disease and many rare diseases in the United States. "Pharmaceutical price controls disproportionately harm the most vulnerable, including both Medicaid and Medicare beneficiaries. These patients deserve better solutions focused on improving their care and overall health outcomes, not policies that delay or deny access to critical treatments. “Compounding these concerns, foreign price setting systems often rely on discriminatory value assessments that restrict access based on a person’s age, health status, or disability. The National Council on Disability has documented these harms, and PFCD stands firmly against discrimination in all forms. “Well more than half of American adults live with at least one chronic condition, and chronic disease accounts for the majority of U.S. health care spending. With the potential to save and improve lives through continued medical advancement, now is the time to foster innovation, not hinder it with misguided policies that are not focused on the realities for patients. “We urge President Trump to immediately withdraw this executive order and instead pursue solutions that protect both patient access and innovation. Americans’ health must be the priority.”

There is no ignoring the facts. The United States faces a chronic disease crisis, and the Trump administration is correct to prioritize addressing it. Conditions like diabetes, cancer, and heart disease affect more than half of U.S. adults and account for 90% of health care spending. Meaningful reforms must prioritize prevention, improve access to recommended care, and support innovation in treatment and care delivery. A healthier America means lower health costs, better quality of life, and a stronger, more productive economy. But another truth is undeniable: The drive to defeat chronic disease stalls if Medicaid patients are placed in the backseat. That’s what makes a recent policy push so counterproductive. The “most favored nation” (MFN) drug pricing proposal being floated in Washington threatens to sink access for millions of chronic disease patients. It would tie Medicaid drug reimbursements to the lowest prices set by foreign countries, where drug pricing is often based on criteria that discriminates against older people, people living with disabilities, and others whom Medicaid is designed to protect. Medicaid currently guarantees the lowest price in the market, as manufacturer rebates reduce drug costs by more than 50% on average. Importing drug prices from countries with discriminatory coverage practices would upheave the system, exposing an already vulnerable population to increased medical complications. Medicaid-enrolled adults (ages 19-64) report higher chronic condition rates than privately insured adults (75% vs. 66%), and nearly one-third report three or more chronic conditions. Medicaid provides essential health care to over 70 million Americans—including a reported 37 million children, millions of seniors, people with disabilities, veterans, caregivers, and low-income working families. It ensures children who need it can access home nursing care, helps veterans and caregivers manage chronic and mental health conditions, supports rural hospital operations, and enables seniors to live independently. Today, the federal program is far from perfect, but it is a lifeline for those who need it, many millions of Americans who are among the most vulnerable in our country. For individuals living with chronic illnesses, intellectual disabilities, cancer, diabetes, or behavioral health conditions, Medicaid is often the only pathway to care. Women, particularly those facing serious diagnoses like breast cancer, and workers in low-wage jobs without employer health coverage, also rely heavily on the program. Research shows Medicaid beneficiaries face provider shortages in every state. Low reimbursement rates make it difficult for patients to find doctors who accept Medicaid — and even harder to receive the consistent, high-quality care required to optimize medical outcomes.   Disrupting reimbursement rates would only increase access barriers for low-income Americans. The MFN approach also endangers the future of medical innovation. The U.S. leads the world in drug discovery because of a market-based system that rewards the development of new therapies. Tying reimbursement to foreign price controls risks choking investment in research and development, just as chronic diseases are poised to rise. Over the next five years, up to 15 million more Americans could be diagnosed with a chronic illness. An estimated 9 million could lose their lives to these diseases. Yet thousands of promising treatments are in development — therapies that could extend life, prevent hospitalizations, and reduce health care costs. This is a time to encourage such discovery, not disincentivize it. The Partnership to Fight Chronic Disease was founded in 2007. Across the nearly 20 years since, various administrations have been largely asleep at the wheel on chronic disease despite the rise in obesity and other related conditions that have worsened the strain on our health care system. The Trump administration’s grip on the wheel and eyes on the road are a welcome change of pace. Still, wrong turns happen. This latest proposal would put the health, dignity, and economic security of these communities at serious risk—forcing hospitals to reduce services or close, eliminating preventive care, and pushing already vulnerable patients into crisis. Medicaid isn’t just a program—it’s the foundation of health access for millions. Congress must dismiss this misguided, risky proposal that would severely jeopardize the vision to make America healthy again.

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 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.” ###

May 5, 2025 (Washington, D.C.) The Partnership to Fight Chronic Disease (PFCD) today called on Congressional leaders and the Trump Administration to ensure that treatment access for people living with chronic diseases in Medicaid remains a priority across new policies that aim to make America healthy now and in the future. As chronic conditions such as diabetes, cancer, and heart disease affect more than half of all U.S. adults and account for 90% of the nation’s health care costs, we call on decision makers to take patient-focused action to improve health outcomes across America. Any serious Medicaid reform must prioritize prevention, improve access to recommended care, reduce waste, and foster innovation in treatment and care delivery. A healthier America translates to lower health costs, better quality of life, and a stronger, more productive economy. These priorities are particularly critical for Medicaid-covered individuals living with multiple chronic conditions and rural communities facing persistent health disparities.  Special attention must be paid to America’s Medicaid population, which includes about 37 million children, many living with rare diseases, elderly nursing home residents, individuals living with disabilities, and pregnant women. These vulnerable populations face disproportionate barriers to care. Medicaid-enrolled adults have significantly high rates of chronic illness, with nearly one-third living with three or more chronic conditions.  Recent policy proposals that harm Medicaid coverage and access, including a "most favored nation" (MFN) drug pricing model, risk undermining access to the care and medicines on which Medicaid beneficiaries rely for their health. Provider shortages and other access challenges already plague Medicaid and hinder health improvement and cost savings. Tying drug prices to foreign standards, where value assessments often discriminate against people with disabilities and chronic illnesses, could severely limit access to essential treatments, destabilize the very safety net programs that support our most at-risk citizens, and stifle medical innovation. Low provider reimbursement, persistent shortages, and shrinking pharmacy access already make it difficult for Medicaid patients to receive consistent, high-quality care. Any cuts to coverage or reductions in provider payments and reimbursement schemes will only deepen these challenges. With millions more Americans expected to be diagnosed with chronic diseases in the coming years, now is the time to advance policies that support, not hinder, access to treatment, especially for those who need it most. As lawmakers consider efforts to make America healthy again, we urge them to reject proposals that jeopardize coverage and care access for America’s most vulnerable populations. Instead, we need solutions that support access to recommended care and work to advance health innovations that strengthen the nation’s response to chronic disease. ### Media Contact: Jennifer.Burke@fightchronicdisease.org

Results Show Interest in the Medicare Prescription Payment Plan Increases as American Seniors Learn More About It April 3, 2025 (WASHINGTON, D.C.) The Partnership to Fight Chronic Disease (PFCD) today released new polling data showing a majority of seniors with Medicare prescription drug coverage are unaware of the Medicare Prescription Payment Plan, a new program designed to help manage out-of-pocket costs. The findings highlight the need for greater education and outreach to ensure eligible seniors can take advantage of this cost-saving opportunity. The survey, conducted by independent research firms GQR and Public Opinion Strategies, found that just 26% of seniors knew some or a lot about the program, while nearly half (48%) had heard nothing at all. However, once respondents received more information, interest in the program significantly increased. Launched in January 2025, the Medicare Prescription Payment Plan offers seniors with Medicare Part D or Medicare Advantage plans the option to break their out-of-pocket prescription drug expenses into monthly installments to avoid having to make large payments earlier in the year. The new program is a part of a broader series of changes Medicare is making to Part D this year, including an automatic cap on out-of-pocket costs at $2,000 per year. As the survey results demonstrate, greater awareness of the program can lead to increased participation, ensuring more seniors can benefit from this financial flexibility. “These results show that too many seniors are missing out on a program that could help them better manage their prescription drug expenses simply because they don’t know it exists,” said Candace DeMatteis, policy director at the Partnership to Fight Chronic Disease. “When they learn about the Medicare Prescription Payment Plan, they see its value. The low awareness presents the opportunity for policymakers and stakeholders to better communicate how this program can help Americans on Medicare budget for their healthcare expenses more effectively." Additional key findings include: 74% of seniors say they’d heard little to no information about the Medicare Prescription Payment Plan. Seniors say the ability to opt in at any time during the year (76%) and the assurance of no additional costs (75%) are the most convincing reasons to sign up. After receiving information about the program, nearly half (48%) of seniors who report spending more than $1,000 per year on prescription drugs say they would likely use it. 81% of seniors think their Medicare plan or Medicare itself is responsible for making sure they have information about programs like this. “Seniors shouldn’t have to navigate complex healthcare costs without clear information,” GQR senior partner Anna Greenberg said. “By raising awareness and providing accessible information, more Medicare beneficiaries can take advantage of this important cost-saving option.”   “When it comes to their healthcare expenses, seniors want predictability, and the Medicare Prescription Payment Plan can offer exactly that,” Public Opinion Strategies partner Nicole McCleskey said. GQR and Public Opinion Strategies designed and administered this survey of 500 Medicare recipients who have additional prescription drug coverage (either Medicare Part D or Medicare Advantage) from Jan. 27 to Feb. 2, 2025. Most respondents (397) were selected from online opt-in panels, and 103 were contacted by phone to increase coverage of minority and rural respondents.  View the detailed findings here , and visit fightchronicdisease.org  to learn more.

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.” ###

Their coexistence is not coincidental. New data application from a recent study further illuminates the relationship between the two major issues, revealing if every American living with obesity hypothetically reduced their body mass index (BMI) by 5%, the cumulative effect would save $68.1 billion in private health insurance spending annually and $21.7 billion in Medicare.   A 10% BMI reduction (i.e. a drop from 30 to 27 BMI; from 40 to 36 BMI, etc.) from every American with obesity, defined as having a 30 BMI or higher, would save $128.3 billion in private insurance and $41.6 billion in Medicare. A 25% BMI reduction annually saves $270 billion and $92.9 billion, respectively. Dr. Ken Thorpe, professor at Emory University and chairman of the Partnership to Fight Chronic Disease, based these findings on figures from his December research study, Estimated Reduction in Health Care Spending Associated With Weight Loss Among Adults . VIDEO: Obe$ity in America: Making Cost Reduction a Reality That study, which used dollars from 2023, explored how lower health care spending is associated with a 5-25% BMI reduction. While BMI is considered an imperfect obesity marker, not accounting for such composition factors as muscle mass, the macro picture paints a clear image of how obesity and health care costs are intertwined. Obesity, itself categorized as a disease, is associated with various chronic diseases. “When reducing body weight and mass, you often reduce blood pressure, cholesterol and blood sugar levels,” Thorpe said. “You alleviate physical stress that can lead to severe complications, including a stroke or heart attack. If we had a different BMI distribution in adults, we would spend less on health care than we do today.” The findings inform a financial lens through which to view personal health. From gym and class memberships, athletic equipment to non-processed groceries, positively associated habits like exercise and nutrition carry a clear, initial financial cost. The same applies for FDA-approved GLP-1 drugs, as the weekly injections have been shown in randomized trials to reduce body mass and lower the likelihood for Type II diabetes and cardiovascular disease, among other benefits. Such dollar signs stare at Americans in plain sight, influencing their daily decision-making. But there is a financial cost, too, for not preventing or mitigating obesity. As Thorpe’s research shows, it’s significant.

January 17, 2025 (WASHINGTON, D.C.) Today, the Partnership to Fight Chronic Disease (PFCD) released the following statement in response to the Biden Administration’s announcement of 15 new drugs selected for Medicare price negotiations under the Inflation Reduction Act:  "Tens of millions of Americans living with chronic diseases like diabetes, cancer, and high blood pressure rely on prescription drugs to manage their conditions and avert costly and life-threatening health emergencies. Improving access to medications to treat these conditions is critical, but government pricing has the opposite effect. We encourage the incoming Administration and new Congress to revisit the flawed program and pursue reforms that preserve access and promote innovation for people living with chronic disease.   “Each of the drugs CMS selected for pricing are small molecule medicines that are not only essential to the treatment of many chronic diseases but also are favored by seniors for their ease of use and accessibility. IRA provisions disadvantage these medicines in favor of medicines that require administration by a healthcare provider, which greatly hinders access in rural and other underserved areas. Patient advocates have repeatedly called for reforms like the bipartisan EPIC Act  to preserve access to small molecule medicines. CMS’s latest list makes the EPIC Act and other reforms even more urgent.  “CMS also continues to stretch its overly broad definition of “qualifying single source drug” to treat distinct products with different medical uses and subject to individual FDA approvals as a single selected drug. This action ignores clinical realities, the research and development efforts involved, and severely undermines the development of new products that address unmet medical needs.  “Despite concerns raised by patients and providers, CMS has refused to require protections for patient access including increased prior authorization requirements that risk patient health and burden providers. Along with significant premium increases and loss of Part D plan options, these flaws provide ample justification for the incoming Administration to delay implementation and allow time to revisit and reform the program.  "Moreover, government price setting policies are not addressing the true cost drivers in our health care system. Just this week, the Federal Trade Commission found that PBMs pocketed more than 7 billion dollars by inflating drug prices from 2017-2022 alone. Ignoring the role that insurers and pharmacy benefit managers play in increasing costs at the pharmacy counter isn’t going to deliver any savings to the people who need it.  "Currently, more than half of Medicare beneficiaries are managing three or more chronic conditions, and as Medicare enrollment continues to rise, so do the associated costs. Rather than attempting to curb these expenses with price controls, policymakers must work to better address the rise in chronic disease by elevating prevention and eliminating increasing barriers to care and treatment.  "There is great urgency to reform IRA policies that ignore the real needs of Medicare beneficiaries. Unresolved concerns over the significant harm to patient access and clear evidence of R&D funding shifting away from small molecule medicines highlight the immediate need to revisit and reform the IRA’s drug pricing program before allowing it to continue. PFCD stands ready to advance policies that realistically account for the true burden of chronic disease in our country and genuinely support effective chronic disease management aimed at better overall health outcomes in the U.S."

Modest weight loss among adults with obesity cuts health care spending by 15%, reduces costs across comorbidities December 5, 2024 (Washington, D.C.)  Obesity is quickly rising to the top of the list of chronic conditions in the U.S. with more than 40 percent of adults having obesity, with the highest prevalence seen among adults aged 40-59 years – prime working years. [1] Obesity also increases the risk of developing a host of other chronic conditions including diabetes, cardiovascular disease, and many cancers. Addressing obesity by promoting weight loss, accordingly, should reduce costs not only related to obesity but also these comorbid conditions. Recent research by Emory University Professor and Partnership to Fight Chronic Disease (PFCD)  Chair Ken Thorpe published today in JAMA Network Open  – Estimated Reduction in Health Care Spending Associated With Weight Loss Among Adults – highlights the potential savings resulting from modest to moderate weight loss by adults with obesity, including savings by comorbid condition, represented by reduced health care spending among U.S. adults with employer-sponsored insurance or Medicare. Key findings from the research include: Economic Burden of Obesity : In 2023, obesity cost employers and employees $400 billion, with health care costs accounting for less than half that total. Obesity-related higher medical costs alone added $1,514 per person. [2] This new research shows that modest to moderate weight loss would significantly reduce those costs: For individuals with employer-sponsored insurance: A 5% weight loss reduced health care spending by $670 or 8% per person annually. A 25% weight loss reduced spending by $2,849 annually or 34%. For weight loss of 5-20%, individuals with the following comorbidities would realize the greatest reductions in annual health care spending: Obesity and diabetes - $1,840-$5,821 Obesity and arthritis - $1,917-$6,143 Obesity and chronic back problems - $1,422-$4,729 Medicare stands to save even more: A 5% weight loss reduced spending by $1,262 (7%) per person annually. A 25% weight loss reduced spending by $5,442 (31%) per person annually. Lifestyle Intervention Implications : Lifestyle programs that promote healthy eating and exercise coupled with evidence-based treatment interventions (e.g., bariatric surgery or novel weight-loss medications/GLP-1 agonists) are effective tools but may face coverage restrictions that limit access. Expanding access to evidence-based treatments for obesity could yield substantial health care savings. These findings highlight the significant potential for achievable weight loss among adults with obesity to reduce health care costs and the economic burden of disease, particularly for those living with multiple chronic conditions or high BMI levels. This is especially promising relative to last week’s proposal by the Centers for Medicare & Medicaid Services to cover anti-obesity medicines under Medicare Part D and Medicaid when used to treat obesity. If finalized, this broad new coverage would have a profound impact on the ability of Americans to access these novel medications that could significantly reduce obesity-related health care spending and improve overall health. “We must address obesity as the disease it is by focusing on prevention and treatment that empowers people to lose weight and maintain a healthy weight while improving their health. Reducing obesity lowers costs across several chronic conditions and should be a priority focus for employers, Medicare and other payors moving forward,” urged Thorpe.  For the full research and more information on efforts to address obesity: www.fightchronicdisease.org/obesity . https://www.businesswire.com/news/home/20241205473135/en/New-Analysis-Shows-Weight-Loss-Saves-Employers-and-Medicare-Health-Care-Costs [1]   https://www.cdc.gov/nchs/products/databriefs/db508.htm [2]   https://ehdinsurance.com/report-obesity-cost-employers-and-employees-ove...$1%2C514%20in%20higher%20medical%20costs,$2%2C427%20in%20higher%20presenteeism%20costs

American voters are willing to pay more to ensure access and want Congress to step in if Medicare continues restricting access to Alzheimer's treatments. WASHINGTON, DC / ACCESSWIRE / October 10, 2024 / More than four in five voters (82%) favor requiring Medicare and other insurance companies to cover early Alzheimer's treatments approved by the U.S. Food and Drug Administration (FDA) -- including 65% who strongly favor this policy even if it increases health insurance premiums -- according to a new poll conducted by Lake Research Partners and Public Opinion Strategies. Nearly three-fourths of voters (73%) would be willing to pay $5 more each month to make it happen. "Voters agree that Medicare beneficiaries should have access to these medicines," said Celinda Lake, president of Lake Research Partners. "At their core, Democrats, Republicans, and independents alike believe that people with Alzheimer's shouldn't be treated any differently from those with other diseases. Few other issues show these levels of consensus and urgency amongst voters." "The public also believes that it's wrong for Medicare to require that beneficiaries participate in clinical research as a condition of coverage for receiving these new Alzheimer's medicines," said Neil Newhouse, partner and co-founder of Public Opinion Strategies. "It's remarkable that they're willing to pay more for insurance coverage if it helps expand access to novel therapies for people with Alzheimer's." The poll was commissioned by the  Alliance for Aging Research ,  UsAgainstAlzheimer's , and the  Partnership to Fight Chronic Disease (PFCD) .  Since April 2022, the Medicare program has required "coverage with evidence development" (CED) for all FDA-approved early Alzheimer's therapies. Under a CED, Medicare indiscriminately mandates that beneficiaries enroll in clinical studies for coverage of selected treatments, or else coverage will be denied. The program also imposes strict eligibility criteria on the health professionals and hospitals that can qualify to collect data and run the studies. The net effect is  only a small fraction of Medicare beneficiaries   have gotten access to the two current early Alzheimer's treatments available, Leqembi and Kisunla. No other FDA-approved drugs for on-label use in other diseases have been subject to CED. Other public and private payers have followed Medicare's lead, including TRICARE and Cigna. Several other private payers use complex guidelines to deter utilization.   The polling data shows voters - both Democrat and Republican - disagree with the CMS's restrictive policies: 92% of voters agree that Medicare should provide all beneficiaries access to FDA-approved Alzheimer's drugs, just as they do to FDA-approved drugs for all other diseases. 78% of voters strongly agree. 89% of voters agree that Medicare should immediately cover the costs of these FDA-approved Alzheimer's drugs. 77% strongly agree. 78% of voters agree that the government should not require patients to participate in medical research studies on any FDA-approved drug in order to get access to that drug. 65% strongly agree. 90% of voters agree that Medicare should cover all FDA-approved drugs and therapies for Alzheimer's disease and allow patients and their doctors to make decisions based on risks, benefits, and individual health needs. 77% strongly agree. 78% of voters agree that if Medicare does not act, Congress should step in to require that Medicare cover FDA-approved drugs and therapies that can slow the progression of early Alzheimer's disease. 65% strongly agree with congressional intervention. 58% of voters said they would be more likely to vote for a candidate for elected office if that candidate supported requiring Medicare to cover FDA-approved drugs and therapies that can slow the progression of early Alzheimer's disease. Just 3% of voters would be less likely to vote for them. "The American people get that Medicare is a payer, and it's their job to cover and pay for FDA-approved medications, not to dictate clinical care. Voters know that doctors and families with Alzheimer's are more than capable of making treatment decisions based on risks, benefits, and individual health needs-and they'll vote for candidates who promise to make sure that happens,"said Sue Peschin, president and CEO of the Alliance for Aging Research. "They don't like what Medicare has done to restrict access to Alzheimer's treatments, and they want Congress and the President to step in if the agency doesn't change its ways."  "More than half of all Americans know someone who is living with Alzheimer's or another form of dementia. This is a deeply personal issue for all Americans," said George Vradenburg, chairman and co-founder of UsAgainstAlzheimer's. "That's why people of all political persuasions are dismayed with Medicare's approach to Alzheimer's. This is the first time in history patients have had to jump through these tremendous hoops to gain Medicare access to FDA-approved drugs they need to live longer healthier lives. The American people clearly want Medicare to cover Alzheimer's medicines approved by FDA the same way cancer and other FDA-approved medicines are covered." "People stand for fairness in Medicare coverage and reject Medicare's policies that erect barriers to treatment," said Ken Thorpe, Chair of the Partnership to Fight Chronic Disease. "The American people recognize the importance of quality time for patients and families navigating Alzheimer's and support policymakers who act to ensure access." ### For more information or to schedule an interview with a representative from any of the organizations named above, please contact John O'Connor at  john@keybridge.biz  or (202) 981-5042. About the Survey Lake Research Partners and Public Opinion Strategies designed and administered a phone survey of likely 2024 voters that was conducted August 26 to September 3, 2024, using professional telephone interviewers. A portion was also completed online, after part of the sample received a text to their cell phone with a link to complete the survey online. The survey reached a total of 1,400 likely 2024 voters nationwide which includes a base sample of 1,000 likely 2024 voters and oversamples of 100 Black voters, 100 Latino/a voters, and 200 voters across the following battleground states: Arizona, Georgia, Michigan, North Carolina, Nevada, Pennsylvania, and Wisconsin. The oversamples were weighted down into the base sample to their proper proportions of the universe for a total sample size of 1,000. The margin of error is +/- 2.6%. About the Alliance for Aging Research The Alliance for Aging Research is the leading nonprofit organization in the U.S. dedicated to changing the narrative to achieve healthy aging and equitable access to care. The Alliance strives for a culture that embraces healthy aging as a greater good and values science and investments to advance dignity, independence, and equity. The Alliance believes advances in research help people live longer, happier, more productive lives and reduce healthcare costs over the long term. For more information, visit  agingresearch.org . About the Partnership to Fight 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. For more information, visit  www.fightchronicdisease.org . About UsAgainstAlzheimer's UsAgainstAlzheimer's is engaged in a relentless pursuit to end Alzheimer's, the sixth leading killer in America. Our work centers on prevention, early detection and diagnosis, and access to treatments -- all regardless of gender, race, or ethnicity. To achieve our mission, we give voice to patients and caregivers while partnering with government, scientists, the private sector, and allied organizations -- the people who put the "Us" in UsAgainstAlzheimer's. For more information, visit  UsAgainstAlzheimers.org .

September 13, 2024 (Washington, DC)  The Partnership to Fight Chronic Disease (PFCD)  released the following statement upon delivery of a sign on letter to Congress  from more than 30 patient and consumer advocacy groups calling for support of the bipartisan Ensuring Pathways to Innovative Cures (EPIC) Act, HR 7174 : “The Inflation Reduction Act (IRA) has begun to impact medicine costs for beneficiaries, notably capping insulin costs at $35 per month for Medicare enrollees and setting a $2,000 annual limit on out-of-pocket prescription drug costs starting in 2025. While these measures provide significant savings, the IRA has unintended consequences, particularly in steering research funding away from certain types of drugs.   “In particular, the IRA enables Medicare to set prices for certain prescription drugs but sets different timelines for doing so: 13 years for biologics and only 9 years for small molecule drugs. This discrepancy discourages investment in small molecule medicines, which often come in pill form and are therefore more accessible and convenient for managing chronic conditions compared to biologics, which often require a physician to administer them. “The IRA's implementation is already affecting R&D decisions and investments to favor biologics over small molecules for many chronic diseases. This shift could harm patients who rely on the convenience of being able to take medicines at home. Small molecule medicines are also adept at crossing the blood-brain barrier, which allows them to be used in the treatment of neurological conditions such as epilepsy, Parkinson’s disease, depression and other mental health conditions. “To correct this imbalance and improve the lives of the millions of individuals and families managing chronic conditions across the US, a bipartisan bill called the EPIC Act proposes equalizing the timeline for Medicare drug pricing at 13 years for both small molecules and biologics. This would encourage continued investment in small molecule drugs to address unmet medical needs and preserve access to the next generation of innovative medicines for patients.” For the full letter to Congress and more information on the value of small molecule medicines for millions of people living with chronic disease across the US: https://www.fightchronicdisease.org/resources/EPIC-Act .

Case studies highlight peril to treatment advances across several disease states August 14, 2024 (WASHINGTON, DC) The Partnership to Fight Chronic Disease (PFCD) today announced the release of a new data set that highlights critical risks posed to the development and delivery of new treatments and cures for patients living with lung and rare cancers, autoimmune and mental health conditions, stroke, cardiovascular disease and diabetes. The analysis, conducted by Lumanity , explores the treatment advances that likely would have been lost had the Medicare Drug Price Negotiation Program of the Inflation Reduction Act (IRA) been in place 10 years ago. By using real life examples of innovation losses, the extent of the unintended consequences of the IRA to some of our country’s most vulnerable patients is evident. “Advances in medicine help us manage our health, but poor policy choices lessen our ability to address unmet medical needs of people living with chronic disease. These case studies demonstrate in real terms the advances that stand to be lost without reforms to the IRA that disincentivize specific types of innovation,” stated PFCD Chair Ken Thorpe. “PFCD and our partners have long worked to support access and affordability for prescription medicines and to address rising costs by improving transparency, fixing flawed systems, and removing administrative obstacles.” The overarching takeaways from these case studies in innovation lost are the significance of post-approval research and how the IRA’s timeline for Medicare pricing disincentivizes research into areas of the greatest unmet medical needs for patients. The repercussions are especially acute for people living with autoimmune and rare diseases, mental illnesses, cardiovascular conditions and many cancers. Key findings include: One in five people treated for depression would have stopped taking their medicines because of side effects but for the development of second-generation anti-depressants. Of 80,000 people receiving a drug with indications for multiple rare cancers: 51,300 were treated for the cancer type with the largest indication and the remaining 28,000 had some other cancer. The IRA puts these individuals and treatments resulting from post-approval research at risk. Post-FDA approval research on diabetes proved a medication class’s positive effects that reduced the damage of diabetes on the heart and kidneys. Without that research, in a ten-year period the healthcare system would have incurred an addition of $7 billion for hemodialysis, and $1.3 billion for post-stroke treatment and rehabilitation. In addition, 14,000 deaths would be prevented. Without new medicines for early lung cancers, only half as many people with non-small-cell lung carcinoma (NSCLC) would be cancer free and alive five years after treatment. The full collection of fact sheets can be found at: www.fightchronicdisease.org/resources/new-data-illustrate-human-impacts-fewer-treatments-IRA . For more information on the unintended consequences of the IRA and the resulting challenges posed to chronic disease patients, please visit: https://www.fightchronicdisease.org/resources/ira

By Hannah Pfeiffer and Candace DeMatteis June 5, 2024 Boulder Daily Camera   A group of unelected state officials is pondering a decision with enormous consequences for thousands of Colorado patients battling chronic diseases. In 2021, Colorado established a Prescription Drug Affordability Board (PDAB) with the power to determine whether certain medications are affordable. If the PDAB deems a drug unaffordable, it can establish an upper payment limit — or price cap — limiting how much insurers can reimburse clinics and pharmacies for a particular medicine. This is already happening for medications that treat Crohn’s disease, psoriasis, arthritis and many other conditions. This might sound like a positive development for patients who struggle to afford necessary prescriptions. But a mounting body of evidence shows that the PDAB is unlikely to generate significant savings at the pharmacy counter, and could actually jeopardize Colorado patients’ access to cutting-edge therapies. A new report analyzing insurers’ perspectives on PDABs found that payment limits could make it harder for patients to access the medicines they need. For instance, if one drug in a therapeutic class is assigned a payment limit, health plans could direct patients toward that drug, even if they prefer to take a different drug in the class. The same report found that limiting how much insurers and their pharmacy benefit managers (PBMs) reimburse pharmacies and clinics could have unintended consequences on patient access. There’s a risk this exact scenario could play out here in Colorado. Earlier this year, Colorado’s PDAB determined that one treatment for autoimmune diseases — including several types of arthritis and psoriasis — was unaffordable. Now, the board will determine whether, and at what level, to set the upper payment limit. If the board proceeds, it’ll be the first state-level drug payment cap in American history. The predictably devastating, and now insurer-validated, consequences the decision could have on patients’ health should concern us all. Lowering patient costs is an important goal. But medications must also still be available. With the distortions PDAB’s upper payment limit could introduce, access could suffer. Many pharmacies, clinics and hospitals might no longer be able to stock certain drugs because the PDAB cap on reimbursement will shrink their margins to almost nothing. They could even lose money on some drugs. Consider drugs that must be administered under the supervision of a physician, or ones that must be delivered through a specialty pharmacy. The providers purchase the drugs directly and are reimbursed for them by insurers. If the PDAB sets the state’s upper payment limit far below the cost of acquisition, those providers may stop providing those medicines to patients altogether. While well-resourced clinics and specialty pharmacies in affluent areas may be able to absorb some loss, rural clinics and facilities in underserved communities may not. Many of them are barely able to keep their doors open right now. The impact on Black and Latino populations could be severe. A Health Affairs study noted that there were far more “pharmacy deserts” in Black or Latino neighborhoods than in White or mixed-race communities. In fact, Black patients spend an average of ten minutes longer traveling for health care needs than their white counterparts. The impacts of upper payment limit implementation will only exacerbate existing access challenges, while doing little to save patients money or improve health outcomes. Payment limits could even affect patients who don’t currently take the medicine in question. That’s because insurers and their pharmacy benefit managers (PBMs) will inevitably try to steer patients toward the medicines with the largest profit margins. For instance, insurers and PBMs may require doctors and patients to obtain “prior authorization” before agreeing to pay for a medicine — but erect no such barriers for a competing drug with an upper payment limit. Similarly, if one drug in a therapeutic class is assigned an upper payment limit, health plans could force patients to try that drug first, even if a patient’s doctor recommends a different treatment in the same class. These policies aren’t just a headache. They have real-world consequences on health. It’s well documented that switching stable patients from one drug to another can harm patients’ health since different drugs affect people differently. This is especially true for people managing multiple chronic conditions who have to avoid interactions between different medications. In essence, doctors’ clinical judgment will take a back seat to health plans’ financial considerations. Colorado’s PDAB is playing with fire — but it’s Colorado patients living with serious chronic illnesses who will get burned. Hannah Pfeiffer is a cystic fibrosis patient and advocate living in Parker, Colorado. Candace DeMatteis, JD, MPH is the Policy Director for the Partnership to Fight Chronic Disease.

April 2, 2024 (Washington, DC)  Today the  Partnership to Fight Chronic Disease (PFCD)  released a new white paper, “ Health Plans Predict: Implementing Upper Payment Limits May Alter Formularies and Benefit Design But Won’t Reduce Patient Costs ,” which details feedback from executives of six different health plans insuring nearly seven million lives with direct prescription drug affordability board (PDAB) implementation experience. The findings in the paper resulted from in-depth interviews conducted by Avalere. Two of the six health plans have direct experience in Colorado.   Along with several stakeholders across patient communities, PFCD is working to elevate concerns about the potential negative impact PDABs will have on people living with chronic diseases and their access to medications. While proponents of PDABs claim they will lower costs and improve access to medicines for patients, this research demonstrates that even insurers are dubious about those claims. The Colorado PDAB is tasked with setting an upper payment limit (UPL) for drugs it deems “unaffordable” in the state. A UPL affects insurers and PBMs directly, not patients.  Insurers, PBMs and other payers, in turn, will continue to make the decisions about what patients pay out-of-pocket and any conditions patients must meet for coverage like requiring step therapy or prior authorization. The white paper presents payer reactions to UPLs and anticipated shifts in plan benefit design, and importantly, how these changes will impact patient access and costs. The paper also notes insurer perspectives on how providers who purchase medicines, including physicians who buy and administer drugs, will be affected given the financial risks of spending more on a medicine than a UPL will allow them to be reimbursed. Insurers confirm what patient advocates fear: UPLs will not lower patient costs and will increase barriers to access. The white paper includes insurer feedback related to the impact on plan benefit design, patient cost sharing, provider reimbursement, and contracting and reimbursement changes due to a UPL. The paper also includes several recommendations for ways to lower costs for people living with chronic illness and assuring greater transparency and patient advocate participation in the PDAB consideration processes. “Having health plans confirm that patients are likely to experience greater barriers to access across classes of medicines and will not see lower premiums or other out-of-pocket costs is a clear red flag related to PDAB efforts,” stated PFCD Chair Ken Thorpe. “While many share the goal of lowering patient costs for drugs, accomplishing it must focus directly on costs to the patient, not the payer. Comprehensive and sustainable solutions that facilitate patient access to recommended care would improve health outcomes and lower the burden of illness for patients and the system overall.” For more information please visit, www.fightchronicdisease.org .

February 1, 2024 (Washington, D.C.)  Today the Partnership to Fight Chronic Disease (PFCD) applauded Representatives Greg Murphy (R-NC), Don Davis (D-NC), and Brett Guthrie (R-KY) for their leadership in support of millions of Americans living with chronic disease and the introduction of the Ensuring Pathways to Innovative Cures (EPIC) Act ( H.R. 7174 ). Unintended consequences of the Inflation Reduction Act (IRA) arise from the discrepancy in price-setting timelines between small molecule drugs and biologics. Recently, twenty healthcare groups signed onto a  letter voicing their support for responsive legislation, like the EPIC Act, to reverse this disincentive and implement the same 13 years post-FDA approval timeline for biologics and small molecule medicines alike under the Medicare Drug Price Negotiation Program. The bipartisan introduction of legislation to address the small molecule penalty is a critical step forward in protecting access to prescribed medicines for older adults and people with disabilities. 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. [1] Small molecule drugs often come in simple to use forms, like pills, tables, and patches. These medicines allow greater independence and quality of life, two important benefits that extend beyond the patient and onto caregivers as well. “Access to small molecule drugs is crucial for underserved populations, including those in rural areas, and supports health equity. The IRA's shortened timeline for small molecule drug pricing will not only result in serious consequences for Medicare beneficiaries in the present and future but will also exacerbate access barriers to new treatments and further health disparities,” said PFCD Chair Ken Thorpe. “We stand ready to support Reps. Murphy, Davis and Guthrie in raising awareness of this important healthcare issue, rallying their colleagues and advancing the EPIC Act into law.” ###

Findings Published in Health Affairs Forefront Precedent-setting policies to restrict access to accelerated approval drugs do not reduce health care spending but rather harm America’s most vulnerable patients   June 3, 2022 (WASHINGTON, D.C.)  The Partnership to Fight Chronic Disease (PFCD)  today released, “ Quantifying Impact of Accelerated Approval Drugs on Medicaid Spending: An Update through 2020 and State-Level Analysis ,” an updated and enhanced economic analysis examining the impact of the Food and Drug Administration’s (FDA) accelerated approval pathway on Medicaid spending. The findings were simultaneously published in a Health Affairs Forefront  commentary titled " Accelerated Approval Drugs are Not Driving Medicaid Spending .” Authored by Kenneth Thorpe, PhD, Chair of PFCD and of the Department of Health Policy & Management for the Rollins School of Public Health at Emory University, the analysis found that drugs approved through the accelerated approval pathway accounted for less than one percent of annual Medicaid spending year-over-year between 2007 and 2020, on both the national and state level. The key findings of the report include:  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%).  The Health Affairs Forefront commentary , coauthored by Thorpe and Thomas Johnson, Principal, Johnson Health Ventures, and former CEO of Medicaid Health Plans of America, explores the findings through the lens of the ongoing debate about the pathway and its potential health equity implications. “The accelerated approval pathway delivers breakthrough treatments to millions of patients and families who are facing serious diseases with no options. In addition, the pathway has spurred invaluable research and development efforts in many fatal cancers and rare diseases, like sickle cell disease,” stated Thomas Johnson. “To compromise access to these treatments for Americans with Medicaid health coverage is bordering on unethical.” Misunderstanding and misperceptions about accelerated approval have contributed to several recent and concerning proposals to alter the pathway itself and restrict coverage of accelerated approval drugs in the Medicare and Medicaid programs. For example, the Medicaid and CHIP Payment and Access Commission (MACPAC) recommended to Congress that manufacturer rebates be increased for certain drugs approved through the pathway. Similarly, several states, including Massachusetts, Oregon, and Tennessee, requested the ability to waive their federal requirement to cover accelerated approval medicines for patients reliant on Medicaid, often citing cost concerns. Notably, the Centers for Medicare and Medicaid Services’ (CMS) recent National Coverage Determination for a new class of Alzheimer’s treatments, singles out those relying on the accelerated approval pathway for differential, restrictive coverage treatment .  “The accelerated approval pathway has become a red herring in the debate over drug prices. Given the tremendous impact of accelerated approval drugs on patients’ lives and the minimal impact found on Medicaid budgets, efforts to deny patients access to these therapies should be considered baseless, discriminatory, and counter-productive,” said Kenneth Thorpe. “Chronically ill patients with life-threatening diseases have no time to waste. That’s precisely why the FDA originally established the accelerated approval pathway, and it has worked as intended for 30 years, giving patients and their families faster access to safe and effective treatments where none previously existed.” The report  released today and the Health Affairs Forefront commentary build on the original analysis by Thorpe and the data-driven commentary co-authored by Thorpe and American Action Forum President Douglas Holtz-Eakin published in the American Journal of Managed Care in March 2021. Today’s update incorporates the latest available national spending data and adds a state-by-state analysis. For the full analysis and related resources, please visit: https://www.fightchronicdisease.org/resources/accelerated-approval About the Accelerated Approval Pathway   Since 1992, the FDA’s accelerated approval pathway has delivered more than 270 treatments to patients with life-threatening diseases who previously had limited or no treatment options.  The pathway was created to address unmet medical needs of people living with HIV/AIDS and over time extended it to include cancer treatments. In 2012, Congress modernized and enhanced the pathway to expand its use for rare diseases. The pathway employs the same rigorous standard for evaluating safety and efficacy as FDA’s traditional approval. Under accelerated approval drugs are approved based on a surrogate endpoint — a metric for which the evidence demonstrates is reasonably likely to predict clinical benefit – with a post-marketing confirmatory study requirement to verify the predicted clinical benefit. Accelerated approval is one of several FDA expedited approval programs. To learn more about the pathway and the patients who have been helped by accelerated approval treatments, please visit: https://www.fightchronicdisease.org/resources/accelerated-approval   ### https://www.businesswire.com/news/home/20220603005266/en/New-Analysis-Fi ...

CMS decision harms current and future treatment options for Alzheimer's and other chronic disease populations April 8, 2022 (Washington, D.C.) The Partnership to Fight Chronic Disease (PFCD) released the following statement from Chair Ken Thorpe regarding the Centers for Medicare and Medicaid Services (CMS) National Coverage Determination requiring Coverage with Evidence Development (NCD) for monoclonal antibodies (mABs) targeting amyloid for the treatment of Alzheimer’s disease.  “We have serious concerns about how the NCD severely limits access to an entire category of new treatments for Alzheimer’s disease and will exacerbate health disparities. The unparalleled precedent this week’s decision makes has compounded those concerns across the chronic disease community. CMS’s decision not only sets back access and hope for the well more than six million Americans living with Alzheimer’s disease, their families, and caregivers, it sets a dangerous precedent for others living with serious or life-threatening illnesses with limited to no treatment options. By singling out drugs approved through the FDA’s accelerated approval pathway, the decision sends shockwaves far beyond the Alzheimer’s community, impacting millions more living with serious chronic conditions including cancers and rare diseases. “This decision threatens access for all Alzheimer’s treatments within the class identified as well as any new therapies for which Medicare deems FDA approval and associated clinical data provide insufficient evidence of clinical benefit to Medicare beneficiaries. The clinical trial criteria outlined will exacerbate known health disparities by raising barriers to access. These barriers disproportionately affect people living in rural areas and people of color already underrepresented in clinical research. “Further, it puts at risk future innovations seeking the FDA’s accelerated approval pathway which has been delivering breakthrough treatments for three decades now and transforming the lives of some of our nation’s most vulnerable patients. “People living with chronic diseases, in consultation with their care partners and treating physicians, should have the option to use FDA-approved therapies and CMS should not undercut those treatment options by compromising access and coverage. By setting an unprecedented new standard for coverage of FDA-approved therapies and significantly undermining FDA’s authority on the safety and effectiveness of therapeutics, this decision will have a devastating effect. “We have waited decades for disease-modifying treatments for Alzheimer’s disease. A thousand people a day progress from mild Alzheimer’s disease to moderate disease and, accordingly, become ineligible for these treatments. CMS’s decision affects an entire promising class of new, disease-modifying treatments by making what is in essence a non-coverage decision with limited exceptions. This decision will set back innovation for Alzheimer’s disease significantly.”

Lack of cures combined with minimal viable treatments compounds increasing health and caregiving costs   May 27, 2021 (WASHINGTON, D.C.)   The Partnership to Fight Chronic Disease (PFCD)  today released a literary review and infographic data on Alzheimer’s disease and related dementias (ADRD), Parkinson’s disease and motor neuron diseases, specifically amyotrophic lateral sclerosis (ALS) and spinal muscular atrophy (SMA). The data review examines specific disease burden, economic burden, individual costs, and caregiver burden for these neurodegenerative diseases. The annual cost for these conditions in the U.S. was $655 billion in 2020, including direct medical and non-medical costs and indirect costs from lost productivity and uncompensated caregiving hours. Neurodegenerative disease arises when nerve cells in the brain or other parts of the nervous system lose function and eventually die. While there are some viable treatments currently available that may relieve some of the associated symptoms, only SMA has disease-modifying treatments available. Collectively, these diseases affected 4.7 to 6.0 million individuals in the U.S. between 2016-2017, were responsible for more than 272,000 deaths and more than 3 million disability adjusted life years in 2016. “The enormous burden of these illnesses is felt not just by the patient but also their families and caregivers,” emphasized Ken Thorpe, PFCD Chairman. “The vulnerability of people living with these conditions, the increasing demands of their illness and the prevalence projections we are seeing all point to a dire need for reforms to support those diagnosed and their caregivers and to encourage and prioritize research and innovation that leads to new treatments and cures.”  The data review notably highlights: Ethnic, demographic and education metrics, Direct and indirect medical costs, Specific health care cost components, Progressive productivity losses, and Unpaid caregiving costs. “The very nature of neurodegenerative disease commands a greater understanding of the growing numbers, the increasing needs and related costs for people living with these types of health conditions as research continues for urgently needed treatments,” said Dr. Allan Levey of the Department of Neurology and Goizueta Alzheimer’s Disease. For the full literature review and infographic overview on related issues, please visit: www.fightchronicdisease.org/resources/us-burden-neurodegenerative-disease .   ###  The Partnership to Fight Chronic Disease (PFCD ) is an international coalition of patient, provider, community, 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.

Data support preserving access to accelerated approval drugs for the seriously ill   Commentary in the  American Journal of Managed Care  warns that restricting access to accelerated approval therapies has minimal budget implications, but poses significant harm to patients   March 30, 2021 (WASHINGTON, D.C.)  The Partnership to Fight Chronic Disease (PFCD)  today released, “ Quantifying Impact of Accelerated Approval Drugs on Medicaid Spending: De Minimus Impact, Maximum Attention ," an economic analysis examining the impact of the Food and Drug Administration’s accelerated approval pathway on Medicaid spending. A commentary based on the analysis was simultaneously published in the American Journal of Managed Care, " Limiting Access to Accelerated Approval Drugs: Costs and Consequences ." The analysis, authored by PFCD Chairman and Chair of the Department of Health Policy & Management for the Rollins School of Public Health at Emory University Kenneth Thorpe and American Action Forum President Douglas Holtz-Eakin , found that drugs approved through the FDA’s accelerated approval pathway accounted for less than one percent of annual Medicaid spending between 2007 and 2018. “Understandably, states are looking for effective means to manage their health care budgets. This was true before the COVID-19 pandemic and it is even more true today,” said Holtz-Eakin. “Through this analysis of Medicaid spending, we found that policies aimed at restricting access to therapies approved under the FDA’s accelerated approval pathway are not effective levers to address budget shortfalls. Given the unequivocally positive impact of these treatments on people living with diseases where there are no other treatment options, it is unacceptable for state and federal official to continue to pursue these ineffective policies.”  The accelerated approval pathway was initiated in 1992 to address unmet medical needs of oncology and HIV/AIDS patients. The pathway allows drugs for serious conditions to be approved by the FDA based on a surrogate endpoint — a measure that is reasonably likely to predict clinical benefit– with a post-marketing confirmatory study requirement to verify the predicted clinical benefit. In 2012, Congress modernized and enhanced the pathway to expand its use for rare diseases. The pathway has been credited with significant advances in the treatment of life-threatening diseases where patients have limited or no treatment options.  “The FDA accelerated approval pathway has given hope to countless patients struggling with life-threatening diseases, including cancer, HIV/AIDS and thousands of rare conditions,” said Annie Kennedy, chief of policy and advocacy at the EveryLife Foundation . “The burden of these diseases is so massive – from the individual patient and family burden to the broader societal and economic impact. It’s unthinkable to deprive patient communities the life-saving and life-altering benefits of these therapies that have potential to significantly alleviate those burdens. The findings published today demonstrate that therapies that meet the rigor of FDA approval through the accelerated approval pathway should not be candidates for Medicaid budget cuts.”  Medicines approved via accelerated approval meet the same standards for safety and efficacy as all FDA-approved medicines. Despite this, the accelerated approval pathway has come under scrutiny by public and private payers for its use of surrogate endpoints as the means to determine whether a drug works and because accelerated approval drugs are perceived as drivers of health care costs. Over the years, state Medicaid programs have inappropriately limited access to accelerated approval drugs and proposed excluding them from formularies, despite federal law requiring Medicaid to cover any FDA-approved treatment that meets the definition of a covered outpatient drug as defined in federal statute. For example, Massachusetts and Tennessee have formally requested waivers from the Centers for Medicare & Medicaid Services that would exempt them from this longstanding federal requirement.  Thorpe and Holtz-Eakin’s analysis yielded the following key findings:   Spending on drugs approved through the accelerated approval pathway accounted for less than one percent of annual Medicaid spending between 2007 and 2018. Spending on accelerated approval drugs remained steady at 0.6% to 0.8% beginning one year after the 2012 passage of the Food and Drug Safety and Innovation Act, which expanded use of the pathway to rare diseases. Hospital spending consumed the largest share of Medicaid spending year-over-year (34.5%), followed by physician and clinical services (11.7%) and all prescription drugs (8.9%). Contributors to the growth in overall Medicare spending from 2007 to 2018 included hospital spending (29.2%), all prescription drugs (16.7%), and physician and clinical services (16.2%). Accelerated approval drugs accounted for 1.3% of Medicaid spending growth from 2007 to 2018. “These data clearly support preserving access to accelerated approval drugs for seriously ill patients within Medicaid programs,” stated Thorpe. “State schemes to avoid coverage requirements directly undermine Congress’s intent in establishing, and later enhancing, the accelerated approval pathway and raise serious concerns that certain Medicaid patients are not being offered equal access to life-saving medicines.”  For the full analysis of Medicaid spending on accelerated approval treatments and more information and resources on the issue, please visit: www.fightchronicdisease.org/resources/acceleratedapproval . ###  The Partnership to Fight Chronic Disease (PFCD) is an international coalition of patient, provider, community, 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.   Media Contact: Jennifer Burke Jennifer.Burke@fightchronicdisease.org

Findings Show Upper Payment Limits (UPLs) Could Increase Costs and Restrict Access to Critical Medicines March 31, 2025 (Washington, D.C.)  The Partnership to Fight Chronic Disease (PFCD) today released new research demonstrating that state Prescription Drug Affordability Boards (PDABs) and associated Upper Payment Limits (UPLs) may have unintended consequences that could negatively impact people living in with chronic diseases.  Interviews and a survey of health insurers confirm concerns many have raised: UPLs will likely increase patient costs and hinder access to prescribed medicines. These findings directly contradict assertions that state PDABs will improve affordability and access. A survey of regional and national health plan payers with PDAB-related experience and covering hundreds of millions of lives revealed significant concerns regarding the implementation of UPLs: 77% of health plan payers  believe UPLs would disrupt patient access to prescription drugs due to coverage changes, tiering adjustments, increased cost-sharing, or supply chain complications, including pharmacies potentially refusing to stock medicines with UPLs. 67% of payers  anticipate that patient cost-sharing for UPL-designated drugs will either increase (50%)  or remain the same (17%), while 70%  expect out-of-pocket (OOP) costs for drugs in the same class to either rise   (53%)  or stay unchanged (17%). 57% of payers  foresee increases in health insurance premiums if a UPL is enforced. 50% of surveyed payers  indicated that utilization management restrictions  on UPL-designated drugs would likely increase . 73% of respondents  expressed concerns that UPLs could lead to shortages  of critical medicines, with 60%  believing pharmacies might be unable to stock these drugs. 57% of payers  agreed that UPLs could result in providers receiving lower reimbursements for administering affected drugs, potentially reducing availability for patients. State lawmakers have introduced PDABs and UPLs in an effort to control health care costs and lower patient spending on prescription drugs. As of March 2025, eight states—Colorado, Maine, Maryland, Minnesota, New Hampshire, New Jersey, Oregon, and Washington—have enacted PDAB legislation, with four (Colorado, Maryland, Minnesota, and Washington) authorized to establish UPLs for drugs deemed “unaffordable.” However, definitions of “unaffordable” vary by state, and at least one PDAB has struggled to define this concept. While the intention behind PDABs and UPLs is to alleviate financial burdens on patients, the findings suggest that these policies may instead create significant disruptions, leading to higher patient OOP costs, premium increases, restricted pharmacy reimbursement, and reduced medicine availability. “People living with chronic diseases face constant challenges when it comes to managing their health, and prescription drug affordability boards are not a solution. Rather than improving affordability, UPLs could have the opposite effect—leading to increased costs for patients and limiting access to the medications they rely on to manage chronic conditions,” said Ken Thorpe, Chair of the Partnership to Fight Chronic Disease. “Policymakers should carefully consider the unintended consequences of these measures before implementing policies that may do more harm than good for the millions of people across the U.S. living with one or more chronic conditions.”  The full white paper can be viewed HERE .  An Avalere Insights piece can be viewed HERE .   ###

April 4, 2025 (Washington, D.C.)  – The Partnership to Fight Chronic Disease (PFCD) released the following statement in response to the announcement of the Contract Year (CY) 2026 MA and Part D final rule that will not include coverage of anti-obesity medications (AOMs). “There are many factors that contribute to America’s obesity epidemic. There are also many pathways to address it. Today’s decision blocks a major avenue for millions of Medicare and Medicaid patients who, without plan coverage, will not be able to access anti-obesity medications. “Patients and doctors deserve to have the latest scientific innovation on the table when making medical decisions. We are hopeful that, given the Trump administration’s mission to combat chronic disease, an alternative path will soon emerge, one that expands access to this important class of medications and eases obesity’s economic toll on our health care system.” For more information, please visit www.fightchronicdisease.org/obesity . ###