American Kidney Fund Policy Agenda 2017

Thirty million Americans are living with chronic kidney disease, including more than 468,000 individuals who have kidney failure and rely on dialysis or transplantation to survive. As the nation’s largest not-for-profit organization serving people with, and at-risk for, kidney disease, the American Kidney Fund is 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 advance our legislative and regulatory policy agenda.

In 2016, AKF provided assistance to 98,000 ESRD patients with treatment-related costs—not only health insurance premiums, but also treatment-related expenses not covered by insurance; emergency aid during times of natural disaster; and free medications to treat common complications of kidney failure.  For 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 2016, AKF’s HIPP program assisted 82,000 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 60 percent of our 82,000 grant recipients received our support for Medicare Part B and Medigap premiums. The remaining 40 percent received AKF assistance for COBRA, employer group health plans, and commercial premiums, including fewer than 7,600 who received our assistance to access the Affordable Care Act’s (ACA) Qualified Health Plans (QHPs) in individual insurance market for the 2016 plan year.

Fighting insurance discrimination against patients on dialysis

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 end-stage renal disease (ESRD) on dialysis.

Unfortunately, this practice has been extended to other types of insurance coverage beyond ACA Qualified Health Plans, including to Medigap.   The plans stipulate that that coverage will be terminated if the individual accepts any direct or indirect contribution or reimbursement by or on behalf of any charitable organization, with the exception of the entities mandated by CMS as third party payers in their 2014 IFR.

AKF is fighting these discriminatory practices and we are advocating for the Department of Health and Human Services (HHS) to clarify their position on third-party payments, so insurance companies accept premium payments made on behalf of individuals with kidney disease.

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. 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.

Return to top

Health Care Reform

End-stage renal disease is not only physically overwhelming but can also be financially devastating. Although most ESRD patients become eligible for Medicare three months after diagnosis, Medicare requires patients to pay a 20 percent coinsurance with no out-of-pocket limit —patients average $7,000 in out-of-pocket costs annually. And in 23 states, Medigap is not required to be made available to ESRD patients under age 65. 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.  Many low-income individuals need assistance to exercise the option of staying on their private insurance.
As Congress attempts to repeal/repair/replace the Affordable Care Act, the American Kidney Fund is fighting to protect the access of patients with ESRD to affordable and high quality health care.   AKF has a list of principles to guide our support:

  • Pre-existing Conditions – Prior to the ACA, there were individuals who could not find insurance due to a pre-existing condition. Pre-existing condition clauses made it nearly impossible for ESRD patients on dialysis to find an insurance plan because, from the insurers’ point of view, they are too expensive to cover. ESRD patients are unique in that many patients find out they are in kidney failure and need to start dialysis immediately; they don’t have time to prepare for a transition to dialysis and finding alternative insurance. If, for instance, an ESRD patient were on an employer’s insurance and lost that coverage due to leaving work, they would not be able to find another plan. AKF opposes continuous coverage provisions because ESRD patients would find themselves in similar situations as they did prior to the ACA. Most ESRD patients are too ill to work, and they lose their insurance due to leaving their job. If they get a kidney transplant or become healthy enough to work, they will not be able to access the private insurance market if the only protection is found in “continuous coverage.”
  • Adequate Premium Tax Credit – The replacement plan must have an adequate premium tax credit to ensure that consumers can afford health insurance plans. ESRD patients must have dialysis or a transplant to survive. Most patients go to dialysis three times a week for four to six hour sessions. The time needed for proper care takes away from the time that someone can work, and dialysis patients are usually too sick to work. The lack of an income means that in order to fully access the private insurance market, they need premium tax credits that cover enough of the premium so ESRD patients can exercise their choice to buy the private insurance plan.
  • Market Stability – The timeline for repeal of the ACA should correspond to the replacement of a new plan. The continuity of access to health insurance is especially important for individuals with ESRD who need continual access to dialysis. Ensuring that they have health insurance options is a matter of life and death to ESRD patients, and Congress should provide consumers with a seamless transition from the ACA to a replacement plan. Any aspects of the repeal plan that may make health insurance out of reach to a consumer, such as prematurely ending advance premium tax credits (APTC) or cost-sharing funds, should be rejected. Insurers will need time to craft the new health plans that adhere to new laws, and ESRD patients will need to be able to access ACA plans until the new plans are an option.
  • Working to ensure access to ESRD pharmaceuticals on insurance drug formularies
    Creating formularies that treat drugs for chronic diseases differently than other drugs is a way insurance carriers can deter those with chronic diseases from buying their insurance plan. Insurance carriers can put all needed drugs in the top tier, which means that consumers would have to pay the most expensive copay. They can also limit certain drugs to the most expensive plans that are not eligible for tax-credits. AKF continues to monitor these practices.
  • Essential Health Benefits – Retention of essential health benefits in any new plan is vital for consumers. Health insurance policies can be complicated, and individuals believe that when they purchase health care insurance, their health care needs will be met. If insurers are allowed to return to creating policies that don’t cover certain ailments, there will inevitably be consumers who are left without coverage. There needs to be a baseline of benefits that will cover the health needs of the person who purchases it. Since people don’t know what their medical conditions may be, they need to be assured that their health plan will cover whatever disease or illness they may get. It is especially true of individuals who find themselves diagnosed with a chronic diseases like ESRD. If insurers are allowed to write policies that do not cover chronic illnesses, consumers will be hurt. Only with mandating that insurers cover these illnesses, will insurers create plans that provide all of the health care services that the consumer may require.
  • Election of Tax Credit Instead of Government or Group Plans – ESRD patients are eligible for Medicare 90 days after starting dialysis treatment. However, some ESRD patients would prefer to stay on private insurance. In the new health care law, AKF supports continuing to allow individuals to choose to utilize tax credits to pay for their private insurance rather than going on Medicare.

Return to top

Comprehensive immunosuppressive drug coverage for kidney transplant patients

Most recently introduced in the last Congress, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act would provide lifetime immunosuppressive drug coverage for kidney transplant patients under Medicare Part B. Kidney transplant patients under age 65 would be eligible to remain in the Medicare Part B program solely for the purpose of receiving these critical medications.

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 lifetime 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.

We strongly support re-introduction and passage of this legislation.

Return to top

Adequate funding for research and kidney programs

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 end stage renal disease (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

Medical research is critical to finding a cure for kidney disease. Kidney disease research is funded through the National Institute of Diabetes, Digestive and Kidney Disease (NIDDK), which is part of the National Institutes of Health (NIH). The amount of research dollars allocated for kidney disease research needs to be increased. There are currently 30 million Americans with kidney disease, and the amount allocated for research for kidney disease was $585 million in FY 2014. The amount is small when compared with FY 2014 funding level for other diseases: HIV/AIDS was funded $2.9 billion; cancer was funded at $7.9 billion; and heart disease was funded at $1.6 billion. The American Kidney Fund works to increase funding of kidney disease research.

The Chronic Kidney Disease (CKD) Initiative

The Centers for Disease Control (CDC) classifies chronic kidney disease (CKD) as a serious public health issue and is recognized as the ninth leading cause of death in the United States. The CDC’s Chronic Kidney Disease (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 CKD program at approximately 2.2 million per year.  AKF supports increased funding for CKD Initiative to help support more research and other related initiatives on prevention, education and research.

Return to top