American Kidney Fund Policy Agenda 2021

We are a strong and independent voice advocating for policies that improve access to health care and that strengthen quality of care for patients with kidney disease. Together with our nationwide Advocacy Network of more than 14,000 Ambassadors, we work with Congress, the Administration, federal agencies, and state governments to make kidney disease a national priority.

Our 2021 policy priorities seek to make more kidney transplants possible, provide equitable access to health insurance, and drive innovation in research and treatment.

Addressing health disparities and advancing health equity

The issue: There are longstanding health disparities in the U.S.—differences in health outcomes and health care among groups of people related to their race, ethnicity, age, disability, gender, geographic location, socioeconomic status and sexual orientation. Kidney failure (end-stage renal disease or ESRD) disproportionately impacts minority populations: Black Americans make up just 13 percent of the U.S. population, but they account for 35 percent of Americans with kidney failure and are almost four times more likely than white Americans to develop kidney failure. Hispanic Americans are 1.6 times more likely than non-Hispanics to develop kidney failure and Native Americans are 1.2 times more likely than white Americans to develop kidney failure.

To address health disparities and advance health equity so that all individuals have the opportunity to be as healthy as possible, AKF advocates for policies that will:

  • Address the social determinants of health (SDOH), which are the social, economic and environmental conditions that affect health and wellbeing and are significant contributors to health disparities. SDOH include income level, educational and job opportunities, access to housing and utility services, workplace safety, gender inequity, racial segregation, food insecurity, early childhood experiences, and exposure to violence and pollution.
  • Ensure equitable access to affordable and comprehensive health insurance coverage.
  • Improve the health care delivery system to make it more equitable, accessible and inclusive, and to ensure high quality care across demographics and geographic regions, including rural and urban areas.
  • Invest in kidney-related research, particularly research on kidney disease in minority populations.
  • Ensure equitable access to all ESRD treatment modalities across racial, ethnic, and socioeconomic populations to support treatment choice that is clinically appropriate for a person’s health needs and their individual circumstances.
  • Mandate that insurers must accept health insurance premiums from charities, as these programs help communities of color who are more likely to be uninsured.
  • Promote the diversification of the health care workforce and ensure proper training for health professionals to recognize and address implicit and conscious bias.

Ensuring equity in the COVID-19 pandemic response

The issue: People with ESRD have experienced a disproportionate impact from COVID-19. Data from the Centers for Medicare and Medicaid Services (CMS) showed that at the end of 2020, Medicare beneficiaries with ESRD had the highest rate of hospitalization among all Medicare beneficiaries—a rate six times higher than the hospitalization rate for Medicare beneficiaries generally. The situation is even more dire for communities of color, who are disproportionately impacted by ESRD and are experiencing higher rates of COVID-19 infection, hospitalization and deaths.  

To ensure equity in the COVID-19 pandemic response, AKF advocates for policies that would:
  • Improve the public health data infrastructure to modernize reporting on COVID-19 and other diseases and conditions, and to improve the collection and reporting of race and ethnicity data.
  • Ensure equitable access to COVID-19 testing, treatment and vaccines for high-risk populations, including communities of color, underserved populations, and people with ESRD who are on dialysis or have a kidney transplant.
  • Prioritize COVID-19 vaccine education and outreach to high-risk populations who have been disproportionately affected by COVID-19, particularly communities of color and underserved populations who have also experienced medical discrimination and may have higher levels of mistrust in the health care system.

Fighting insurance discrimination against patients on dialysis

The issue: Health insurers systematically discriminate against low-income ESRD patients who rely on charitable assistance to afford their health insurance premiums and access the health care they need to stay alive. Over the years, many insurance carriers have refused charitable premium assistance payments from AKF on behalf of ESRD patients. These patients, who are disproportionately members of racial and ethnic minorities, depend on AKF’s federally-approved, 100% needs-based Health Insurance Premium Program (HIPP) to afford the premiums for their Medicare Part B, Medigap, Medicare Advantage, employer group health, COBRA and other commercial plans, including Qualified Health Plans (QHPs).  

To protect access to health coverage and protect low-income ESRD patients from insurance discrimination, AKF supports:
  • Federal and state regulation that would ensure insurance carriers accept charitable payments on behalf of ESRD patients.
  • Federal and state legislation that would protect patient access to coverage by requiring insurance companies to accept payments from nonprofit charitable organizations like AKF.

Ensuring adequate funding for kidney research and promoting innovation

The issue: Kidney disease affects 37 million Americans—far more than many other diseases. Yet federally funded research for kidney disease has lagged compared with many other diseases. This has slowed innovation in the diagnosis and treatment of a disease that is the fastest-growing noncommunicable disease in the United States.

To address the underfunding of kidney disease research, AKF supports efforts to:
  • Increase appropriations funding for the National Institute of Diabetes, Digestive and Kidney Disease (NIDDK), which is a part of the National Institutes of Health (NIH). NIDDK conducts and supports medical research and research training and disseminates science-based information on kidney diseases.
  • Increase funding for the Centers for Disease Control and Prevention’s (CDC) Chronic Kidney Disease Initiative, which is designed to provide public health strategies for promoting kidney health.
  • Increase funding for KidneyX, the Kidney Innovation Accelerator Program, a public-private partnership to accelerate innovation in preventing, diagnosing and treating kidney diseases.

Encouraging organ donation and supporting kidney transplants

The issue: Kidney transplant is considered the best treatment option for many people facing kidney failure because it can increase their chances of living a longer, healthier life. However, the number of people on the organ transplant waiting list is great—about 108,000 Americans are on the list, with nearly 85 percent of those in need of a kidney. Many will die before they receive one because of the dire shortage of kidneys for transplant.

To encourage organ donation and increase kidney transplants, AKF supports:
  • Federal legislation, such as the Living Donor Protection Act, that would encourage organ donation and protect living organ donors from discrimination when seeking life, disability and long-term care insurance. It would also codify that living organ donors may use Family and Medical Leave time to recover from donation surgery and maintain job security.
  • State legislation that provides tax breaks to living donors and employers who provide paid leave, as well as state legislation that mirrors the federal Living Donor Protection Act.
  • Legislation and regulatory actions to increase accountability for organ procurement organizations and remove barriers for living donation. 
  • Appropriate implementation of extended Medicare coverage of immunosuppressive drugs for kidney transplant patients. 

Supporting Medigap reform

The issue: Most ESRD patients are eligible for Medicare even if they are under 65. But 20 states do not require health insurers to offer private supplemental Medigap plans to these younger Medicare beneficiaries. Without Medigap, patients face daunting out-of-pocket expenses for the 20% of medical care not covered by Medicare Part B and that is not subject to an out-of-pocket cap.

To protect ESRD patients who do not have access to Medigap, AKF supports:
  • Federal legislation that would ensure guaranteed availability of Medigap supplemental insurance to all Medicare ESRD beneficiaries, regardless of age.
  • State legislation that would require insurance companies that offer Medigap coverage to make it available to ESRD patients under 65 and that would place limits on the premiums charged to ESRD patients so that Medigap is affordable

Ensuring access to high quality, patient-centered care for Medicare beneficiaries with kidney disease

The issue: As the Medicare benefit continues to evolve for ESRD beneficiaries and people with earlier stages of chronic kidney disease, and as policymakers examine ways to improve quality and lower costs, access to coverage options, supporting patient choice in treatment options, and improving care quality and patient education must be at the center.

To ensure access to high quality, patient-centered care for Medicare beneficiaries with kidney disease, AKF supports policies that would:
  • Include coverage of kidney disease screening in the Medicare wellness visit.
  • Expand access to the Medicare Kidney Disease Education benefit, which provides education to patients on how to take the best possible care of their kidneys and the information they need to make informed decisions about their care.
  • Ensure ESRD patients who may want to enroll in a Medicare Advantage plan are not discriminated against through inadequate provider networks for dialysis patients.
  • Maintain flexibilities for the use of telehealth during the COVID-19 public health emergency (PHE) for a period after the PHE ends and make permanent certain telehealth flexibilities. 
  • Ensure mandatory payment models such as the ESRD Treatment Choices (ETC) Model and voluntary Kidney Care Choices payment models preserve or enhance the quality of care and the patient experience and supports a patient in choosing a modality that is clinically appropriate for their health needs.
  • Ensure quality measurement that has the patient perspective in mind, and that furthers the goals of improving patient care, experience and outcomes.

Protecting and enhancing access to health coverage under the Affordable Care Act, Medicaid, and employer-sponsored insurance

The issue: The elimination of preexisting condition exclusions for health insurance under the Affordable Care Act (ACA) has enabled patients with chronic diseases, including kidney disease, to enroll in private commercial health plans that provide comprehensive coverage. Medicaid, which provides health coverage for one in five low-income individuals, plays a vital role in helping enrollees prevent and manage chronic conditions such as chronic kidney disease and its leading causes, diabetes and hypertension. However, administrative actions over the last several years and the COVID-19 pandemic has jeopardized access to affordable, comprehensive coverage for many Americans.

To protect and enhance access to affordable, comprehensive coverage for patients with chronic conditions such as kidney disease, AKF supports policies that would: 
  • Restore the integrity of the ACA essential health benefit (EHB) requirements to ensure patient access to comprehensive benefits and lifesaving services and treatments such as chronic kidney disease management, dialysis treatment, and kidney transplant.
  • Rescind regulations that have led to the expansion of less comprehensive insurance options, such as association health plans and short-term limited duration plans, which are exempt from covering the essential health benefits or can deny or limit coverage for people with preexisting conditions.
  • Strengthen the ACA Marketplace by funding reinsurance programs, cost-sharing reduction payments, ACA enrollment outreach and education activities, and expanding eligibility for cost-sharing reduction subsidies and advanced premium tax credits beyond the current income thresholds.
  • Establish a special enrollment period for ACA Marketplace coverage in response to the COVID-19 pandemic; we also support legislation that would add a new qualifying event and automatically trigger a special enrollment period during future public health emergencies. 
  • Provide subsidies to help individuals who have lost their employer-sponsored coverage during the COVID-19 public health emergency pay for their COBRA continuation coverage so they can maintain continuity of care. 
  • Rescind policies that create barriers to Medicaid coverage by encouraging states to seek changes to Medicaid eligibility and benefits, such as imposing work or service requirements, lifetime coverage limits, lock-out penalties, elimination of retroactive eligibility and increased cost sharing. We support policies that uphold the core statutory objective of the Medicaid program, which is “to furnish medical assistance [to individuals] whose income and resources are insufficient to meet the cost of necessary medical services.”
  • Enhance federal Medicaid funding by automatically increasing federal support to state Medicaid programs during economic downturns and link Federal Medical Assistance Percentage (FMAP) adjustments to state unemployment levels.

Protecting patient access to needed medications; supporting lower prescription drug costs

The issue: Access to medically appropriate prescription drugs for kidney patients must be preserved amid federal efforts to address the rising cost of prescription drugs. Patients with chronic kidney disease, kidney failure and kidney transplants rely on prescription drugs to manage their kidney disease and comorbidities. Patients need access to medically-appropriate prescription drugs that are effective and right for their individual situation, and they must be able to afford them.

To protect patient access to needed medications, avoid disruptions to stable drug regimens, and support lower prescription drug costs for patients, AKF supports:
  • Efforts that encourage the introduction and availability of generic prescription drugs and biosimilars, while maintaining effective safeguards to ensure that patients for whom generic substitution is not medically appropriate still have access to branded drugs that are part of their stable drug regimen. AKF supports maintaining patient access to prescription drugs in the Medicare Part D program as it relates to the six categories and classes of drugs of clinical concern (the six protected classes), which includes immunosuppressive drugs for treatment of transplant rejection.
  • Policies that would result in lower drug costs and lower out-of-pocket costs for patients, including a restructuring of the Part D benefit that creates a true out-of-pocket cap for beneficiaries with a smoothing mechanism. We also support policies that protect a patient’s ability to use drug copay coupons, discount cards, charitable assistance and other assistance to afford needed medications, and to have that assistance count towards their annual deductible and out-of-pocket spending cap.