Access and Affordability in Chronic Disease Care
Rayna Young, MPP Research Analyst, Congressional Black Caucus Foundation
Diagnosing the Problem
Chronic diseases are long-term, non-communicable illnesses that can be attributed to a combination of genetic factors and social determinants of health — non-medical factors, like class, environment, and race, that influence health outcomes. Chronic diseases disproportionately impact Black Americans, who have higher incidence and fatality rates of diabetes, cardiovascular disease, and cancer than white Americans. i Black Americans are also less likely to be insured than white Americans, raising their costs for chronic disease care. ii The consequences of this can be dire, as nearly two-thirds of Americans with hypertension and diabetes report cost-related nonadherence, meaning they skipped or reduced medical dosages due to affordability issues. iii Policymakers must act in order to ensure that all Americans suffering from chronic diseases can afford the treatments they need.
Fast Facts
21% of Medicaid recipients and Children’s Health Insurance Program (CHIP) enrollees are Black. iv
ONE IN TEN
Medicare recipients are Black.v
11.4% of Black adults are uninsured, compared to 6.4% of white adults.vi
12.9% of Black adults have diabetes, compared to 8.9% of white adults.vii
ABOUT 60% of Black adults have some sort of cardiovascular disease (CVD), while only 49% of all U.S. adults have CVD.viii
Black people are MORE THAN 3 times as likely to have kidney failure compared to white Americans.ix
Black men have 4% HIGHER cancer incidence rates and 16% HIGHER cancer mortality rates than white men.
Black women have 9% LOWER cancer incidence rates and 10% HIGHER cancer mortality rates than white women.x
Federal Interventions
In recent years, the federal government has implemented policies to increase access and affordability to chronic disease care.
President Biden signed the Inflation Reduction Act in 2022, which included historic provisions that are lowering drug prices for Medicare recipients.xi The bill instituted a $2,000 annual cap on prescription drugs taken in non-clinical settings and a $35 per month cap on out-ofpocket insulin costs for diabetic patients. In addition, the Biden Administration negotiated with pharmaceutical companies to lower drug prices starting in 2026 for beneficiaries of Medicare Part D, an optional provision that covers prescription drugs administered in non-clinical settings.xii This agreement marked the first time that the federal
government has succeeded in working directly with drug manufacturers to increase affordability for patients. While the federal government does not disclose the price they pay for medications, a comparison of the out-of-pocket costs of five medications used to treat chronic diseases like diabetes, kidney disease, and heart failure, to the rates for Medicare Part D patients after the negotiations shows that the Biden administration helped reduce the cost of these drugs by nearly two-thirds. This policy will dramatically increase the affordability of medications for the nearly 6 million Black Medicare recipients.xiii
THE TRUMP ADMINISTRATION
On April 15, 2025, President Trump signed an executive order to lower prescription drug prices.xxv The order outlines the Trump Administration’s plan to continue negotiations with pharmaceutical companies for Medicare drug prices in 2027 and expand the list of drugs covered by Medicare to include GLP-1s.xxvi While GLP-1s, like Ozempic and Wegovy, have increased in popularity in recent years, they are not covered by many insurance plans and come with high out-of-pocket costs. Increasing the affordability of GLP-1s can help prevent the development of diabetes in patients who are pre-diabetic, obese, and/or have a family history of the disease. The order also instructs the Food and Drug Administration (FDA) to make recommendations for faster approvals of generic drugs, which would lower prices for all patients.
Some provisions in this order conflict with other White House policies or would exacerbate challenges for the healthcare system. In March 2025, President Trump proposed tariffs that would increase the cost
of importing goods from Canada.xxvii The imposition of Canadian tariffs complicates the order’s goal to make it easier for states to import drugs from abroad. The order also instructs community health clinics to provide insulin and epinephrine at more affordable rates but does not allocate funds to subsidize the specific difference in cost. When President Trump attempted to implement a similar policy in 2020, it created an additional burden for local clinics.xxviii With the recent budget cuts to the Centers for Disease Control and Prevention and other health agencies, community health clinics have fewer grant opportunities to supplement their budgets. As a result, clinics could be forced to shut down, reducing overall access to care. Because Black Americans have higher uninsured rates than white Americans and are less likely to live in proximity to primary care physicians, community health centers are crucial sites of care for Black communities.xxix If this order jeopardizes their funding, Black communities will be left without an important avenue for care.
Policy Recommendations
INVEST IN COMMUNITY HEALTH CENTERS
The federal government must provide consistent funding for community health centers in order for them to provide reliable care to patients with chronic diseases.
EXPAND INSURANCE COVERAGE
Ten states have not expanded Medicaid, which extends coverage to people who live between 133% and 138% of the Federal Poverty Level (FPL).xxx
These states must expand Medicaid to improve the accessibility of healthcare for their residents.
FACILITATE
CROSS-SECTOR COLLABORATIONS TO IMPROVE ACCESS TO MEDICATION AND TREATMENT
The federal government should assist states, non-profits, and pharmaceutical companies with operating patient assistance programs, in order to provide low-cost or free medications to uninsured people and those who face affordability challenges.xxxi
Status of State Action on the Medicaid Expansion Decision
Adopted and implemented (41 states including DC) Not adopted (10 states)
Note: * State has a trigger law that would end expansion coverage or require states to take steps to mitigate increases in state costs if federal funding for the expansion is reduced
Source: KFF tracking and analysis of state actions related to adoption of the ACA Medicaid expansion and Searing, Adam. “Federal Funding Cuts to Medicaid May Trigger Automatic Loss of Health Coverage for Millions of Residents of Certain States.” Say Ahhh! Georgetown Center for Children and Families, November 27, 2024
Data Sources
U.S. Department of Health and Human Services. (2025, February 13). Diabetes and Black/African Americans. Office of Minority Health. https://minorityhealth. hhs.gov/diabetes-and-blackafrican-americans. American Heart Association. (2025, February 7). Cardiovascular health risks continue to grow within Black communities, action needed. American Heart Association. https://newsroom. heart.org/news/cardiovascular-health-risks-continue-to-grow-within-blackcommunities-action-needed. Saka AH, Giaquinto AN, McCullough LE, et al. Cancer statistics for African American and Black people, 2025. CA Cancer J Clin. 2025;75(2):111–140. https://www.cancer.org/content/dam/cancer-org/ research/cancer-facts-and-statistics/cancer-facts-and-figures-for-africanamericans/2025-african-american-and-black-stats/caac-2025.pdf
ii USA Facts. (2024, March 15). Who has health insurance? Are rates going up?. USA Facts. https://usafacts.org/articles/share-uninsured-americans-droppedrecent-years-though-racial-and-ethnic-gaps-continue/.
iii Van Alsten SC, Harris JK. Cost-Related Nonadherence and Mortality in Patients With Chronic Disease: A Multiyear Investigation, National Health Interview Survey, 2000–2014. Prev Chronic Dis 2020;17:200244. DOI: http://dx.doi. org/10.5888/pcd17.200244
iv Centers for Medicaid and Medicare. (2021, March 21). Race and ethnicity of the national Medicaid and CHIP population in 2020. Centers for Medicaid and Medicare. https://www.medicaid.gov/medicaid/data-andsystems/downloads/ macbis/2020-race-etncity-data-brf.pdf
v Vanker, P. (2025, April 28). Distribution of Medicare beneficiaries in 2023, by ethnicity. Statista. https://www.statista.com/statistics/248039/distribution-ofmedicare-beneficiaries-by-ethnicity/
vi USA Facts. (2024, March 15). Who has health insurance? Are rates going up?. USA Facts. https://usafacts.org/articles/share-uninsured-americans-droppedrecent-years-though-racial-and-ethnic-gaps-continue/
vii U.S. Department of Health and Human Services. (2025, February 13). Diabetes and Black/African Americans. Office of Minority Health. https://minorityhealth. hhs.gov/diabetes-and-blackafrican-americans
viii American Heart Association. (2025, February 7). Cardiovascular health risks continue to grow within Black communities, action needed. American Heart Association. https://newsroom.heart.org/news/cardiovascular-health-riskscontinue-to-grow-within-black-communities-action-needed
ix National Kidney Foundation. (n.d.). Black Kidney Health Matters. National Kidney Foundation. https://www.kidney.org/black-kidney-health-matters
x Saka AH, Giaquinto AN, McCullough LE, et al. Cancer statistics for African American and Black people, 2025. CA Cancer J Clin. 2025;75(2):111–140. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-andstatistics/cancer-facts-and-figures-for-african-americans/2025-africanamerican-and-black-stats/caac-2025.pdf
xi Cobanski, J., & Neuman, T. (2023, December 12). The New Help for Medicare Beneficiaries with High Drug Costs That Few Seem to Know About. Kaiser Family Foundation. https://www.kff.org/policy-watch/the-new-help-formedicare-beneficiaries-with-high-drug-costs-that-few-seem-to-know-about/
xii Weiland, N., and Robbins, R. (2024, August). U.S. Unveils Price Limits for 10 Costly or Common Medications. The New York Times. https://www.nytimes. com/2024/08/15/us/politics/drug-prices-medicare.html. ; What’s Medicare Drug Coverage (Part D)? | Medicare
xiii National Committee to Preserve Social Security and Medicare. (2021, January 28). Medicare and Medicaid Are Important to African Americans. National Committee to Preserve Social Security and Medicare. https://www.ncpssm. org/documents/medicare-policy-papers/medicare-medicaid-importantafrican-americans/
xiv All Medicare Part D prices came from “Weiland, N., and Robbins, R. (2024, August). U.S. Unveils Price Limits for 10 Costly or Common Medications. The New York Times. https://www.nytimes.com/2024/08/15/us/politics/drug-pricesmedicare.html.”
xv Bristol-Myers Squibb Company. (n.d.). How Much Does ELIQUIS Cost?. Eliquis. https://www.eliquis.bmscustomerconnect.com/price
xvi Ibid.
xvii Novartis Pharmaceuticals Corporation. (n.d.). ENTRESTO® (sacubitril/valsartan) OFFERS SAVINGS AND SUPPORT FROM THE START. Entresto. https://www.entresto.com/financial-support
xviii Ibid.
xix AstraZeneca. (n.d.). Cost and affordability. Farxiga. https://www.farxiga. com/savings-support/afordability?source=FRX_C_C_9429&umedium=cpc&uadpub=MICROSOFT&ucampaign=USA_BI_SEM_B_FARXIGA-DTC-ACTION-SAVINGS-2024&ucreative=Savings&uplace=farxiga+cost&outcome=DTC&cmpid=1&cid=PPC-accountype:MICROSOFT-campaign:USA_BI_SEM_B_FARXIGA-DTC-ACTION-SAVINGS-2024-searchterm:farxiga+cost-adgroup:Savings-keywordid:p79660761355&gclid=ed123bc07459157b47d053c2fa610974&gclsrc=3p. ds&msclkid=ed123bc07459157b47d053c2fa610974
xx Ibid.
xxi Boehringer Ingelheim Pharmaceuticals, Inc. (n.d.). How Much Does Jardiance Cost Per Month?. Boehringer Ingelheim Pharmaceuticals, Inc. https://patient.boehringer-ingelheim.com/us/products/jardiance/ type-2-diabetes/pricing?s_kwcid=AL!6545!10!78821449596283!7882 1839453303&cid=cpc:MSAds:EA_JAR-T2D_DTC_MSADS_US_EN_ BRAND_GENERIC_TRAFFIC_o::Brand_Financial_e_kwd-jardiance%20 cost&gclid=d379ceac138f12706234a6ae82c765d2&gclsrc=3p.ds&msclkid=d379ceac138f12706234a6ae82c765d2&utm_source=bing&utm_ medium=cpc&utm_campaign=EA_JAR-T2D_DTC_MSADS_ US_EN_BRAND_GENERIC_TRAFFIC&utm_term=jardiance%20 cost&utm_content=Brand_Financial
xxii Ibid.
xxiii Janssen Pharmaceuticals, Inc. (2025, March 1). Savings and Support. Xarelto. https://www.xarelto-us.com/xarelto-cost/en/
xxiv Ibid.
xxv The White House. (2025, April 15). LOWERING DRUG PRICES BY ONCE AGAIN PUTTING AMERICANS FIRST. The White House. https://www.whitehouse.gov/ presidential-actions/2025/04/lowering-drug-prices-by-once-again-puttingamericans-first
xxvi Robbins, R., and Sanger-Katz, M. (2025, April). Trump Seeks to Lower Drug Prices Through Medicare and Some Imports. The New York Times. https://www. nytimes.com/2025/04/15/health/trump-executive-order-prescription-drug-pricing.html
xxvii Congressional Black Caucus Foundation. (Apr. 11, 2025). Regulating Imports with a Reciprocal Tariff to Rectify Trade Practices that Contribute to Large and Persistent Annual United States Goods Trade Deficits. Congressional Black Caucus Foundation. Regulating Imports with a Reciprocal Tariff to Rectify Trade Practices that Contribute to Large and by Congressional Black Caucus Foundation - Issuu
xxviii Robbins, R., and Sanger-Katz, M. (2025, April). Trump Seeks to Lower Drug Prices Through Medicare and Some Imports. The New York Times. https:// www.nytimes.com/2025/04/15/health/trump-executive-order-prescription-drug-pricing.html
xxix USA Facts. (2024, March 15). Who has health insurance? Are rates going up?. USA Facts. https://usafacts.org/articles/share-uninsured-americans-droppedrecent-years-though-racial-and-ethnic-gaps-continue/. Caldwell J.T., Ford C.L., Wallace S.P., Wang M.C., Takahashi L.M. Racial and ethnic residential segregation and access to health care in rural areas. Health Place. 2017 Jan;43:104-112. Racial and ethnic residential segregation and access to health care in rural areas - PMC
xxx Healthinsurance.org, LLC. (n.d.). Medicaid Expansion. Healthinsurance.org, LLC. https://www.healthinsurance.org/glossary/medicaid-expansion/
xxxi National Academy for State Health Policy. (2020, October 26). States Curb Racial Inequities in Rx Drug Affordability with Targeted Legislation. National Academy for State Health Policy. https://nashp.org/states-curb-racial-inequities-in-rx-drug-affordability-with-targeted-legislation/.; Johnson & Johnson Health Care Systems Inc. (2025, March 20). Johnson & Johnson Patient Assistance Program. Janssen Care Path. https://www.myjanssencarepath. com/patient-assistance.; Healthwell Foundation. (n.d.). Patients. Healthwell Foundation. https://www.healthwellfoundation.org/patients/
