Medicare Turns 60 and the Kidney Story You Might Not Know

Patrick Meade, Senior Manager, Government Relations

Sixty years ago today, President Lyndon B. Johnson signed legislation establishing Medicare and Medicaid, two of the most significant health programs in American history. Over the decades, these programs have done what they were designed to do: provide essential health care coverage to our nation’s seniors and low-income individuals.

But few know that Medicare plays an especially critical role in caring for Americans with end-stage renal disease (ESRD). While ESRD patients make up only 1% of Medicare beneficiaries, they account for 7% of overall traditional Medicare spending.

Kidney Disease Patients Pave the Road for Expanded Access

In 1971, kidney patient Shep Glazer received dialysis treatment on the floor of the House of Representatives—an advocacy stunt that was controversial at the time. Just a year later, Congress extended Medicare coverage to ESRD patients, a historic moment that stands as the only time Medicare has been expanded to cover a specific disease.

*Shep Glazer demonstrates a dialysis machine in a House Ways and Means Committee hearing in 1971. Source:* *The New York Times*.

This expansion has saved and extended the lives of hundreds of thousands of Americans. For many who rely on dialysis and, ultimately, transplantation, it has meant the difference between life and death.

Access to Dialysis is Only One Piece of the Puzzle

But it’s not enough to keep the system as it is. If the past 60 years were about access, the next 60 must be about improvement, prevention and efficiency. While dialysis can be life-sustaining, it’s incredibly hard on patients. A successful kidney transplant is often the best possible outcome.

That means we need more donor kidneys to help the 13 Americans who will die every day while waiting for an organ that will never arrive. The only way to get there is through stronger policies that protect, support and encourage donation.

Fortunately, there’s promising momentum in Congress, and bipartisan leaders are stepping up:

Organ Transplant Caucus Co-Chairs Representatives Jim Costa (D-CA) and Beth Van Duyne (R-TX), and Kidney Caucus Co-Chairs Suzan DelBene (D-WA) and Carol Miller (R-WV), among others, have introduced transformative legislation aimed at removing disincentives to donation and modernizing how we manage and recover organs.
The Living Donor Protection Act, recently re-introduced in the House of Representatives by longtime transplant champions Don Bacon (R-NE) and Jerry Nadler (D-NY), would prohibit insurers from discriminating against donors in life, disability or long-term care insurance, and ensure that donors are entitled to time off from work to recover through the federal Family and Medical Leave Act (FMLA).
The Reducing Burdens from Organ Donation Act, also recently introduced, would streamline coordination between hospitals and organ procurement organizations (OPOs), ensuring fewer opportunities for donation are missed.

There are also several bills currently under consideration aiming to explore or expand financial support for living donors, underscoring a growing recognition by Congress of the sacrifices donors make.

At CURA, this work is personal. In 2019, we were proud to launch and co-lead the Honor the Gift coalition, a group of over 30 kidney and transplant community organizations united to help pass the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. Affectionately known as the “Immuno Bill,” it closed a long-standing coverage gap: until its passage, Medicare only covered immunosuppressive medications for three years post-transplant. After that, some patients lost access to the medications necessary to keep their new organs functioning—putting them at risk of organ rejection and forcing many back onto dialysis and the transplant waitlist, at a far greater cost to their health and to the system.

*The Immuno Bill was passed by Congress in 2020, following CURA’s partnership with Honor the Gift to secure 140 additional co-sponsors and build a community of over 10,000 advocates.*

Since the Immuno Bill’s passage in December 2020, kidney transplant recipients now receive lifetime coverage for these medications. It was a hard-fought win, proving what’s possible when patients, providers and policymakers come together with a shared mission and a commitment to outcomes over credit.

So today is a day to celebrate Medicare and Medicaid—not just for the coverage they provide, but for the lives they’ve saved. As these programs face political threats, it’s also a time to reflect on the full scope of the patients they serve. Access alone isn’t the end goal. Durable, dignified, patient-centered care is. And for kidney patients, that means protecting the gift of life that is organ donation and ensuring that gift lasts as long as possible.