As people who have lived with kidney failure for years, we know all too well the numerous daily challenges confronting anyone living with this disease. Beyond the immediacy of arranging necessary and frequent dialysis care, there are many other life-changing issues with which those with kidney failure must contend: Will I still be able to work and support my family? How does committing to such a rigorous care schedule impact the rest of my life? Will I ever be able to receive a transplant? Can I even afford the care I need to survive?

People diagnosed with kidney failure are burdened with a whole host of uncertainties like these. But questions about how, and if, they can afford treatments that will keep them alive should not be part of the equation.

Decades ago, our nation demonstrated a commitment to caring for people with kidney failure, also known as end-stage renal disease (ESRD), by allowing ESRD patients to enroll in Medicare regardless of age. This safety net has proven to be life-changing to this vulnerable patient population, but it is simply not enough. Medicare coverage for ESRD only covers 80 percent of an individual’s health care costs, leaving ESRD patients who don’t have supplemental coverage saddled with the responsibility for the remaining 20 percent of costs—an amount that has no cap. Facing a lifetime of medical treatments is daunting, but adding the financial impact of this disease can be almost too much to handle. Fortunately, there is a way to alleviate this problem: expand and improve access to Medicare supplemental coverage to ensure everyone who needs it can purchase it.

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Medigap coverage, also known as Medicare Supplement Insurance, helps fill "gaps" between Medicare coverage and remaining health care costs, but it’s a safety net that has troubling holes. Twenty states do not guarantee ESRD Medicare beneficiaries under 65 access to Medigap—meaning where you live can have a profound impact on your ability to afford care. More than half of all individuals with kidney failure may not have access to this safety net. A recently released report card on the accessibility and affordability of Medigap coverage found that 61 percent of patients living with ESRD are under the age of 65, but only 11 percent of those under 65 on Medicare have Medigap coverage.

Sadly, even when individual states do require insurers to offer Medigap coverage for those younger than 65, it’s often financially out of reach. The same report card indicated that only eight states received an ‘A’ grade for requiring “all or most” Medigap plans to be offered and affordable for those with ESRD who are younger than 65. Twenty-one states were graded ‘D’ or ‘F’ for 1) lack of affordability; 2) not requiring Medigap coverage for those under 65 with ESRD; or 3) excluding these patients from Medigap eligibility altogether.

The inequities do not end there. The ESRD patient population is disproportionately made up of Black Americans and other minority populations who face financial disparities regardless of whether they have ESRD. Black Americans comprise 13 percent of the U.S. population but comprise 35 percent of those on dialysis. Black individuals are also less likely to be identified as kidney transplant candidates, less likely to be referred for transplant evaluation, and less likely to be placed on transplant waiting lists — where they ultimately wait longer than white individuals. These startling statistics underscore the immediate need to shore up Medigap coverage to protect our most vulnerable groups from financial challenges which may prevent them from getting the care they need.

Today, the state in which you live may be a key factor in whether or not an ESRD patient can afford care. For example, Alabama (graded D) — a state with no consumer protections for Medicare-eligible patients under 65 — has only a handful of insurers who offer Medigap plans, and those plans that do are at liberty to charge whatever premiums they want. Many ESRD patients in Alabama cannot afford the current high monthly premiums required for securing Medigap coverage, which can mean less access to care.

Similar to Alabama, the state of California (graded F) explicitly exempts insurers from having to offer individuals with ESRD under 65 with Medigap plans while inexplicably requiring that those options be available to all other individuals with disabilities. The incongruous Medigap and Medicare coverage for people who require dialysis or a kidney transplant, adds another layer of problems accessing care and paying for it. Some patients even end up on Medicaid/Medical so they can afford the high out-of-pocket costs of care.

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It’s simply incomprehensible that people with kidney failure under 65 who are on Medicare can’t access Medigap. Patients with kidney failure are fighting to survive, they shouldn’t also have to fight against inequities built into the system that expose you to Medicare’s high and uncapped 20 percent out-of-pocket costs.

This year, we hope Congress will take on the glaring disparities related to affordability and access for ESRD treatments by passing the bipartisan Jack Reynolds Memorial Medigap Expansion Act (H.R. 1676) — which would expand Medigap coverage for those under 65 who suffer from ESRD and ensure access to lifesaving medications, dialysis, and kidney transplants. Introduced by Reps. Cynthia Axne (D-Iowa) and Jaime Herrera BeutlerJaime Lynn Herrera BeutlerIt's time for Congress to guarantee Medigap Health Insurance for vulnerable Americans with kidney disease Washington redistricting panel reaches late agreement on new lines Trump criticizes McCarthy for treatment of Greene in new book MORE (R-Wash.), the policy change would help any American with kidney failure — regardless of age — afford and access the care they need, as was Medicare’s original intent in covering individuals with ESRD of any age many decades ago. The provision has also been included in the comprehensive bipartisan kidney care community bill, the Chronic Kidney Disease Improvement in Research and Treatment Act (H.R. 4065/S. 1971), introduced by Reps. Terri SewellTerrycina (Terri) Andrea SewellIt's time for Congress to guarantee Medigap Health Insurance for vulnerable Americans with kidney disease It's time to make access to quality kidney care accessible and equitable for all Pressure builds on Democratic leadership over HBCU funding MORE (D-Ala.) and Vern BuchananVernon Gale BuchananMORE (R-Fla.) and Sens. Ben CardinBenjamin (Ben) Louis CardinIt's time for Congress to guarantee Medigap Health Insurance for vulnerable Americans with kidney disease Senators call for Smithsonian Latino, women's museums to be built on National Mall Democrats plow ahead as Manchin yo-yos MORE (D-Md.) and Roy BluntRoy Dean BluntRepublicans seem set to win the midterms — unless they defeat themselves This Thanksgiving, skip the political food fights and talk UFOs instead It's time for Congress to guarantee Medigap Health Insurance for vulnerable Americans with kidney disease MORE (D-Mo.).

Americans with ESRD should not be confronted with a life-threatening health diagnosis only to learn that they have no way to afford the care they need to survive, even with guaranteed Medicare coverage. We must do better as a nation to ensure that Medigap plans with affordable premiums are available to all Americans who have kidney failure and require lifesaving care. 

Lori Hartwell is CEO of Renal Support Network; Andrew Conklin is president, Dialysis Patient Citizens; Cherrie Crockett is patient ambassador of The American Kidney Fund