Good News and Bad News

If you’re anything like me, you’ll want to read the bad news first. (I’ve never understood why anyone would want to hear good news first, feel terrific, only to then be brought back down and left with sad or depressing news.)

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So, first the bad news:

The Living Donor Protection Act, which was first introduced in 2014, still hasn’t crossed the finish line on its way to becoming law. It would provide basic protections against discrimination by insurance companies, as well as job protections for taking time off work to donate. Remember the latest big push during the meetings with lawmakers we had in the fall? We were SO close to finally getting this thing passed. I’m not sure if it’s still technically possible, but it’s as good as impossible. That means we start all over in the next session of Congress. We”ll also need a new House sponsor because Rep. Jaime Herrera Beutler wasn’t reelected.

Now the good news!

Even though it didn’t make it into law, the LDPA had the most cosponsors ever: 158 in the House and 43 in the Senate. That has to translate into increased bipartisan support in the next Congress. In other words, we shouldn’t need to start from scratch. They all know about the act now, and, given that nearly 100,000 people in this country are waiting for a lifesaving kidney, most lawmakers understand its importance.

$$$ for Kidney Disease Awareness and More: Congress just released its final appropriations bill that includes substantial increases in funding for federal programs that promote kidney disease awareness, education, and research. Sure, we need more living donors and must remove obstacles to donation, and yes we need an implantable artificial kidney, but ultimately the best way to meet the critical need for kidneys and save lives by reducing kidney failure, is to PREVENT chronic kidney disease in the first place. So, education and research are absolutely essential.

The Immuno Drug Bill (aka Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act), which finally passed at the end of 2020, goes into effect very soon: January 1, 2023. Believe it or not, this one had been kicking around way longer than the LDPA: 20 years! The kidney community has been fighting to change the law that arbitrarily cuts off Medicare coverage for transplant recipients who don’t otherwise qualify for it–for example, those under 65– after 36 months post transplant. The Immuno bill now ensures that people with no other health plan to pay for their critical antirejection meds will be able to have these drugs covered for the life of the transplant.

Eligible individuals can start applying for the Medicare immuno drug coverage right now. If you have questions, contact the toll-free help line at 855.NKF.CARES (855.653.2273) or .

For related posts, resources, and information on my book, The Insider’s Guide to Living Kidney Donation,

please be sure to explore the rest of my website.

“Good News” on Immuno Drug Bill Is Now Great News!

The good news in my last post was that the House had passed the Immuno Drug Coverage bill extending Medicare coverage for kidney transplant recipients’ medications past 3 years. Next step was the Senate. I’m thrilled to report now that after nearly 20 years of advocacy by the transplant community, this bill is finally going to become law. The Senate has passed it, again with strong bipartisan support, and Trump is expected to sign it.

That means that kidney patients who qualify for Medicare only through the ESRD–kidney failure–category (and have no other coverage) will be able to afford the critical, very expensive, antirejection meds that recipients must take for the life of the kidney. Patients who stop taking their meds because they can’t afford the few thousand dollars a month cost usually lose that new kidney and end up back on dialysis. Many of them die.

Honor the Gift is the name of the most recent ambitious campaign to get this long-overdue legislation passed. Safeguarding the precious gift of life is the best way to honor that gift and save lives. This great news is a big win for kidney patients and advocates–not to mention decency and common sense (it even saves Medicare money).

My fellow National Kidney Foundation kidney advocates and I spread the word about the merits of the immuno drug bill and others when we met with members of Congress during NKF’s virtual kidney patient summit in September. One of the bill’s co-sponsors is my own congressman, Rep. David Price. (That’s him at the bottom of the photo from one such zoom meeting.)

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