American Kidney Fund Policy Agenda 2020

The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through post-transplant living. With programs of prevention, early detection, financial support, disease management, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. AKF is one of the nation’s top-rated nonprofits, investing 97 cents of every donated dollar in programs, and has held the highest 4-Star rating from Charity Navigator for the past 18 consecutive years and holds the Platinum Seal of Transparency from GuideStar.

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. We work with Congress, the Administration, federal agencies, and state governments to make kidney disease a national priority. The following are AKF’s policy priorities for 2020.

Fighting Insurance Discrimination against Patients on Dialysis

For over 20 years, our federally approved Health Insurance Premium Program (HIPP) has supported dialysis patients in all 50 states, consistent with the guidance provided in Advisory Opinion 97-1 (AO 97-1) from the U.S. Department of Health and Human Service (HHS) Office of Inspector General (OIG).  In 2019, AKF’s HIPP program assisted more than 73,000 patients in maintaining the health insurance they selected. Our program is needs-based; to receive help from AKF, patients must demonstrate that without our assistance, they would be unable to afford their coverage.

About 68 percent of our HIPP grants support patients with Medicare Part B, Medigap, and Medicare Advantage premiums. The remaining HIPP grants assist patients with COBRA, employer group health plans and commercial premiums, including about 8 percent of our grants that helped patients access the Affordable Care Act’s (ACA) Qualified Health Plans (QHPs) in the individual insurance market for the 2019 plan year (both on and off-exchange).

Working to ensure that insurance carriers accept charitable payments on behalf of ESRD patients

In March 2014, the Centers for Medicare and Medicaid Services (CMS) released an Interim Final Rule (IFR), entitled the Patient Protection and Affordable Care Act: Third Party Payments of Qualified Health Plans Premiums. CMS stated that insurance carriers must accept charitable premium payments from state and federal organizations, tribal organizations, and the Ryan White HIV/AIDs organizations for the payment of premiums for QHPs.  Since the IFR does not specifically state that insurance companies must accept charitable premium payments from not-for-profit organizations, many insurance carriers are refusing third party payments from AKF on behalf of patients with ESRD who are on dialysis and those who have received a transplant.

Unfortunately, many insurers across the country have extended this practice to other types of insurance coverage beyond ACA Qualified Health Plans, including to Medigap. Several of the plans stipulate that coverage will be terminated if the individual accepts any direct or indirect contribution or reimbursement by or on behalf of any charitable organization, except for the entities mandated by CMS as third-party payers in their 2014 IFR.

AKF is fighting these discriminatory practices and we are advocating for HHS to clarify their position on third-party payments, so insurance companies must accept premium payments made on behalf of individuals with kidney disease. We are also actively communicating with state legislators and insurance commissioners and their staff members about AKF and our HIPP program with the goal of encouraging state insurance departments to direct insurance companies to accept AKF’s charitable assistance payments via formal bulletins, or in the alternative, via directives.

Legislatively, AKF supports the passage of the federal Access to Marketplace Insurance Act, which was introduced in the previous congress and is expected to be reintroduced in the current congress. The legislation would protect patient access to coverage by requiring insurance companies to accept payments from nonprofit charitable organizations like AKF. On the state level, AKF will advocate against state legislation that seeks to limit our ability to provide financial assistance to HIPP grant recipients.

Protecting ESRD patients from insurance carriers pushing them off private insurance

Individuals on dialysis are legally entitled to stay on their group health plan private insurance for 30 months prior to being required to move to Medicare. Many dialysis patients prefer to be on private insurance for as long as legally allowed, and it is their choice. More importantly, staying on employer-based and other commercial insurance is often the only way that ESRD patients can access the specific benefits that they need, including family coverage. Insurance carriers have employed tactics to encourage patients on dialysis to move to Medicare early by offering to pay for the patient’s Medicare Part B premium. Some insurance carriers have told beneficiaries that they must move to Medicare prior to the legal date. AKF is working with state regulators to address these practices.

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Ensuring Adequate Funding for Kidney Research and Promoting Innovation

Appropriations funding is a critical resource in supporting agencies focused on kidney research and public health. These funds allow agencies to support research, award grants to community-based organizations, and make advancements in the development of new life-saving medical treatment and drugs. The National Institutes of Health (NIH) and Center for Disease Control and Prevention (CDC) rely on the United States Congress for the funding needed to deliver services and programs to improve the lives of patients with ESRD.

The American Kidney Fund supports increased appropriations funding to ensure that there are adequate funding levels for programs focused on patients with kidney disease.

Kidney Research Funding

Basic and clinical research is critical to understanding kidney disease—its causes, its progression, and the treatments that can either prevent it from developing or halt its progression. Kidney disease research is funded through the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which is part of the NIH. Federal funding for kidney disease research must be increased, especially given the prevalence of kidney disease and its disproportionately low level of funding compared to other diseases. AKF works to increase funding of kidney disease research.

The Chronic Kidney Disease (CKD) Initiative

CDC classifies chronic kidney disease (CKD) as a serious public health issue. CKD is the ninth leading cause of death in the United States. The CDC’s CKD Initiative was mandated by Congress in 2006 to help solve the growing problem of kidney disease. The CKD Initiative currently funds projects such as surveillance, epidemiology, state-demonstration projects, and economic studies. Early detection and treatment of patients with CKD can help prevent or delay cardiovascular death and progression to kidney failure. Since the program’s inception, Congress has provided direct funding for the CKD Initiative at approximately $2.2 million per year.  AKF supports increased funding for the CKD Initiative.

Kidney Innovation Accelerator Program (KidneyX)

The U.S. Department of Health and Human Services has launched a public-private partnership, KidneyX, to accelerate innovation in preventing, diagnosing and treating kidney diseases. AKF is supportive of this innovation initiative and will be an active participant and help provide the patient perspective as the program progresses.

Kidney Health Initiative

The Kidney Health Initiative (KHI) is a public-private partnership with the U.S. Food and Drug Administration (FDA) that aims to catalyze innovation and the development of safe and effective patient-centered therapies for people living with kidney diseases. AKF is a member of KHI and actively participates in KHI activities to provide insight from the patient perspective. 


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Encouraging Organ Donation

Kidney transplant is considered the best treatment option for many people facing kidney failure because it can increase your chances of living a longer, healthier life and in many cases returning to employment. However, the number of people on the organ transplant waiting list is great—nearly 114,000 Americans are on the list, with 83 percent of those in need of a kidney.  Research has shown that patients who get a kidney from a living donor live longer than patients who get a kidney from a deceased donor. On average, living kidney donor transplants last 15-20 years, and deceased kidney donor transplants last 10-15 years.

AKF supports federal legislation that would encourage organ donation and protect living organ donors, such as the Living Donor Protection Act. The legislation would ensure living organ donors are not denied or given limited coverage or higher premiums for life, disability, and long-term care insurance. It would also clarify that living organ donors may use Family and Medical Leave time to recover from donation surgery and maintain job security. On the state level, AKF supports legislation that provides tax breaks to living donors, as well as state legislation that mirrors the federal Living Donor Protection Act.

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Supporting Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients

Immunosuppressive drugs prevent transplanted organs from being rejected. Medicare currently provides 36 months of coverage for immunosuppressive drugs for non-disabled kidney transplant patients under the age of 65. Patients who stop taking immunosuppressive drugs because they can’t afford them face the loss of their transplanted kidney, necessitating a return to dialysis. Providing extended coverage for these medications would result in better health outcomes for patients, as well as substantial cost savings to Medicare because fewer transplant patients would need to resume dialysis. Recent HHS analyses found potential cost savings of up to $300 million over 10 years if Medicare coverage for immunosuppressive drugs were extended beyond 36 months.

AKF supports the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019, which would extend Medicare immunosuppressive drug coverage for kidney transplant patients beyond 36 months. Kidney transplant patients under age 65 would be eligible to remain in the Medicare program solely for the purpose of receiving these critical medications, and only if the transplant recipient lacks private or other public coverage for these drugs.

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Supporting Medigap Reform

Most ESRD patients become eligible for Medicare three months after diagnosis, and most patients with ESRD are enrolled in Medicare as their primary health insurance coverage. For many of these patients, private supplemental Medigap insurance is needed to afford their cost-sharing, as Medicare Part B covers only 80 percent of medical care with no cap on out-of-pocket (OOP) expenses. ESRD patients have complex health care needs and face high out-of-pocket costs—the average OOP costs for ESRD patients on Medicare are $7,000 and the average annual income of HIPP grant recipients is just under $25,000. However, in 20 states Medigap is not required to be made available to ESRD patients under the age of 65, and these patients represent a sizable portion of dialysis patients in those states—about 92,000.

On the federal level, we support legislation that would ensure guaranteed availability of Medigap supplemental insurance to all Medicare ESRD beneficiaries, regardless of age. This provision is included in the Chronic Kidney Disease Improvement in Research and Treatment Act, which was reintroduced in this congress. In addition, the Medigap Consumer Protection Act of 2019, which has been introduced in the House and Senate, would provide guarantee issue for Medigap insurance for all Medicare beneficiaries, regardless of age; we support this legislation as well. We also support the passage of state legislation that would require insurance companies that offer Medigap coverage to offer it to ESRD patients under 65 and that would place limits on the premiums charged to ESRD patients so that Medigap is affordable.

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Supporting the Advancing American Kidney Health Initiative

AKF supports HHS’ Advancing American Kidney Health initiative and its main objectives: to increase efforts to prevent, detect, and slow the progression of kidney disease; provide patients with kidney disease with more options for treatment; and deliver more organs for transplant. As HHS implements provisions of the initiative, AKF will provide input and feedback to ensure the patient voice is heard and that rulemaking and programs are designed to achieve the intended goals of Advancing American Kidney Health.

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Fighting Insurance Discrimination against Patients with Chronic Diseases

Despite protections provided to patients through existing statutes, there are still insurer policies and protocols that create barriers to needed care for patients with chronic diseases and can be discriminatory in practice. They include: burdensome prior authorization requirements that can restrict or delay needed treatments; drug formulary exclusions and adverse tiering that make treatments for certain diseases unaffordable; and benefit designs and narrow provider networks that may deter those with chronic diseases from enrolling. AKF will continue to monitor these practices and advocate for public policies that mitigate the ability of insurers to discriminate against patients with chronic diseases.

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Protecting Access to Coverage under the Affordable Care Act

Congress has allowed ESRD patients to stay on private health plans, which provides an option for patients who can afford to stay on their private insurance. This option is particularly important given the lack of access to Medigap supplemental plans for ESRD patients under the age of 65 in nearly half the states. Many low-income individuals need assistance to exercise the option of staying on their private insurance.

Any proposed legislative or regulatory changes to the Affordable Care Act (ACA) should maintain patient protections that help people with chronic conditions such as kidney disease access the services they need to manage their conditions. AKF is fighting to protect the access of patients with chronic kidney disease and ESRD to affordable and high-quality health care. AKF has the following principles to guide our support:

  • Access to comprehensive, affordable coverage – It is imperative that Congress and the administration ensure protections for people with preexisting conditions and maintain the integrity of the essential health benefit (EHB) standards established under the ACA. Doing so ensures that people in need of comprehensive and affordable coverage have access to it. We oppose 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 are able to deny or limit coverage for people with preexisting conditions. The expansion of these plan options will siphon healthier individuals from the risk pool, leading to higher premiums for individuals who purchase comprehensive ACA coverage. We also oppose proposed changes to states’ selection of EHB benchmark plans that could lead to less comprehensive categories of coverage and jeopardize access to life-saving services and treatments such as chronic kidney disease management, dialysis treatment, and kidney transplant.
  • Strengthening the ACA Marketplace – AKF supports proposals that would help strengthen the ACA Marketplace, such as funding reinsurance programs, cost-sharing reduction payments, and ACA enrollment outreach and education activities. We also support proposals that would expand eligibility for cost-sharing reduction subsidies and advanced premium tax credits beyond the current income thresholds of 250 percent and 400 percent of the federal poverty level, respectively. By compensating insurers for high-cost patients, providing subsidies for a greater number of people to help them purchase coverage, and increasing enrollment through outreach efforts, these measures will further strengthen the ACA Marketplace and ensure access to comprehensive, affordable coverage options.

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Protecting Medicaid

Medicaid is a critical source of health coverage and an important safety net for the one in five low-income individuals the program covers. By providing access to care for so many Americans, Medicaid plays a vital role in helping enrollees prevent and manage chronic conditions such as chronic kidney disease and its leading causes, diabetes and hypertension.  

AKF strongly supports 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.” Therefore, AKF opposes policy proposals that would undermine Medicaid’s core objective, such as those included in recent Section 1115 demonstration waivers that have been approved or are pending. Changes to Medicaid eligibility and benefits, such as imposing work or service requirements, lifetime coverage limits, lock-out penalties, elimination of retroactive eligibility, and elimination of non-emergency medical transportation, do not further the statutory purpose of the Medicaid program. Rather, these policy changes will increase administrative burden, complexity and costs, which create barriers to coverage for eligible individuals and lead to fewer people, especially vulnerable populations, with access to health care.

AKF also opposes proposals that would change the Medicaid program’s open-ended federal matching fund structure to a block grant or per capita cap system. Capped spending proposals would lead to decreased eligibility and enrollment, harmful cuts to benefits and care, and lessen the ability of state Medicaid programs to respond to an increased need for coverage, such as during a recession—all of which would be in direct conflict with the statutory purpose of the Medicaid program.

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Protecting Funding for Medicare and Medicaid

Given recent projections for increased budget deficits in future years, policymakers may look to cut spending for the Medicare and Medicaid programs. AKF will work to ensure that funding for these critical health programs, which collectively cover more than 129 million Americans, is not jeopardized.

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Protecting Patient Access to Needed Medications; Supporting Lower Prescription Drug Costs

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. As Congress and the administration explore policies to address the rising cost of prescription drugs, AKF has the following principles to guide our support:

  • Protect patient access to medically-appropriate treatments – AKF supports efforts that encourage the introduction and availability of generic prescription drugs and biosimilars. While many of the drugs prescribed to kidney patients are generics, there still need to be effective safeguards in place 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. We oppose policy proposals that create additional barriers to access for immunosuppressive and other drugs in the protected classes, which could disrupt a transplant patient’s stable drug regimen and jeopardize their health.
  • Lower prescription drug costs and patient out-of-pocket costs – Patients with chronic conditions who rely on prescription drugs are particularly affected by high drug list prices because their cost-sharing obligations are tied to the list price, instead of the lower net price negotiated between drug companies and pharmacy benefit managers. AKF supports policy proposals that would result in lower drug costs and lower out-of-pocket costs for patients. 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.

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Supporting New Medicare Advantage Coverage Options for ESRD Patients

As part of the 21st Century Cures Act, Medicare beneficiaries with ESRD will be able to enroll in Medicare Advantage (MA) plans staring in 2021. AKF supports increased coverage options for ESRD patients. AKF will work with CMS and other stakeholders to ensure that implementation of this new coverage option works in the best interest of patients. Specifically, we will work to ensure that any proposed MA payment system and risk adjustment changes are appropriate, that any proposed ESRD quality measures in MA are meaningful to patients, and that the guidelines for MA plan marketing materials are fair and transparent for ESRD beneficiaries.

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Protecting Patients from Surprise Medical Bills

Surprise medical bills can result from a person receiving emergency care at an out-of-network facility or receiving care from an out-of-network physician/specialist at an in-network facility. Patients then receive an unexpected and costly bill after their care that can cause a significant financial burden. Because kidney disease patients have a chronic condition and possibly other comorbidities that may necessitate emergency care, the issue of surprise medical bills is a concern for AKF. As legislators consider ways to address surprise medical bills, AKF believes proposals should ensure that patients are held financially harmless from additional costs associated with out-of-network care or facility costs that the patient cannot control.

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