American Kidney Fund Policy Agenda 2019
Thirty million Americans are living with chronic kidney disease, millions are at risk, and more than 700,000 people in the United States have kidney failure and rely on dialysis or transplantation to survive. Because of our influence on social media, visits to our website, patients served and our financial resources, the American Kidney Fund is the nation’s largest independent not-for-profit organization for people with and at-risk for kidney disease. AKF reaches people no matter where they are in the fight against kidney disease. For those at risk, we provide prevention services. For those living with the disease, we provide disease management education, fund clinical research, and increase awareness of kidney transplant. For those with kidney failure who cannot afford health care, we provide need-based financial support.
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. In 2018, AKF provided assistance to 87,000 end stage renal disease (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.
- Fighting Insurance Discrimination against Patients on Dialysis
- Ensuring Adequate Funding for Kidney Research and Promoting Innovation
- Encouraging Organ Donation
- Supporting Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients
- Supporting Medigap Reform
- Fighting Insurance Discrimination against Patients with Chronic Diseases
- Stabilizing and Improving Access under the Affordable Care Act
- Protecting Medicaid
- Protecting Funding for Medicare and Medicaid
- Protecting Patient Access to Needed Medications; Supporting Lower Prescription Drug Costs
- Supporting Patient-Centered Quality Measurement
- Protecting Patients from Surprise Medical Bills
- Working to Support Policies that Lead to Delaying or Preventing ESRD by Partnering with Diabetes and Heart Groups
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 2018, AKF’s HIPP program assisted more than 75,000 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 66 percent of our 75,000 HIPP grant recipients received our support for Medicare Part B, Medigap, and Medicare Advantage premiums. The remaining grant recipients received AKF assistance for COBRA, employer group health plans and commercial premiums, including about 8 percent who received our assistance to access the Affordable Care Act’s (ACA) Qualified Health Plans (QHPs) in the individual insurance market for the 2018 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 on dialysis.
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.
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, Digestive and Kidney Disease (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 new 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.
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. 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.
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 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.
Previous congresses saw the introduction of the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act, which 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. We support the reintroduction and enactment of this legislation.
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. Most recently, this provision was included in the Chronic Kidney Disease Improvement in Research and Treatment Act, which was introduced in the previous congress and expected to be reintroduced in this congress. 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.
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.
Stabilizing and Improving Access 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.
- Market stabilization – AKF supports proposals that would help stabilize 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 help stabilize premiums in the ACA Marketplace and ensure access to comprehensive, affordable coverage options.
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.
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.
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, and many of the drugs prescribed to kidney patients are generics. However, there 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 also 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.
Supporting Patient-Centered Quality Measurement
Meaningful, patient-centered quality measurement is critical to ensuring quality health care for patients with kidney disease. AKF will continue to provide input and recommendations on potential changes to quality measurement in the Medicare ESRD program with the patient perspective in mind, and that further the goal of improving patient care, experience and outcomes.
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 that the patient cannot control.
Working to Support Policies that Lead to Delaying or Preventing ESRD by Partnering with Diabetes and Heart Groups
As diabetes and heart disease account for 75 percent of all new kidney failure cases, AKF works to educate members of Congress, the Administration, and the public on the link between diabetes, heart disease, and kidney disease. Government proposals that focus on addressing these two chronic diseases, must include information on ESRD. Additionally, AKF aims to partner with these patient groups on issues such as access to affordable insulin and heart medications to prevent or delay ESRD. AKF also intends to work with these patient groups on social determinants of health, nutrition, and exercise to address these chronic illnesses in the United States.