Covering Anti-Rejection Meds Should Be a No-Brainer

Ever hear of the Immunosuppressive Drug Coverage for Kidney Transplant Patients Act? I didn’t think so, but we need to make sure that members of Congress hear about it.

You already may know that virtually all (yes, I know of one exception) kidney transplant patients, unless they got the new kidney from their identical twin, have to take anti-rejection meds for the rest of their lives. That’s so their body’s immune system doesn’t see the organ as a foreign body and pounce on it the way it’s designed to do.

You may also know that Medicare provides health coverage for patients of any age with kidney failure—ESRD, or end stage renal disease (a name, incidentally, that scared the hell out of me when we were first told that was my son’s condition). That’s a good thing, right? Of course, though, there are a few catches, like needing to accumulate enough work quarters or credits, as my son described in a post here recently.

But here’s the real, global problem. For some unfathomable reason, the coverage ends 36 months after the transplant.

That might make sense by some logic if most patients needed to take those anti-rejection meds for a maximum of 3 years. No way–see second paragraph of this post, which points out that virtually all patients have to take them “for the rest of their lives.”

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Now, you may be thinking, well, these drugs are probably available for a nominal charge given that these are life-and-death medications. Think again: they run into the thousands of dollars per month for direct pay. So, depending on what kind of health insurance you have—and if indeed you have any at all—you may very well not be able to afford them. You know what happens when people skip doses or stop taking these essential medications completely? Their bodies reject the transplanted kidney and they’re back on dialysis—or they die.

The campaign to push for extending immunosuppressive drug coverage is called “Honor the Gift”–that is, honor the gift of life by protecting that precious kidney–and it’s supported by virtually every major kidney and organ donation organization in the country. Clearly, it makes no sense either medically or morally to stop this life-sustaining drug coverage at an arbitrary point, when it’s so obviously still needed.

Medical and moral justifications should be reason enough, but there’s a strong economic one, too: in the long run, an organ transplant costs the federal government far less than years of dialysis for those patients. In fact, an analysis by ASPE, a federal agency within the US Department of Health and Human Services, concluded in May 2019 that extending the Medicare drug coverage beyond the 3 years “would result in ten-year accumulated savings of approximately $73 million.”

Bipartisan coalitions in both the House and the Senate have been poised to introduce legislation to extend the Medicare drug coverage. The bill has been introduced more than a dozen times in the past 15 years. Tell your senator and member of Congress that supporting this legislation is a no-brainer for families–like mine–struggling with a loved one’s kidney failure and for society in general.

Power Player- Carol

May 7, 2018

….I’ve always been a wimp: I faint at flu shots, IVs, blood tests. And yet, in June 2006, I donated a kidney to my son, Paul. The reason is simple: his kidneys were failing and I was the only willing one who could. Wimp or not, of course, I’d do it.

He was in his early 20s when he developed ESRD [end stage renal disease]. He’d been diagnosed with IgA nephropathy when he was in college, following a lingering strep infection—not uncommon. Yeah, no hereditary disease, no diabetes or high blood pressure. He wasn’t obese. He just had rotten luck. So, in other words, what happened to Paul—and to our family—could happen to anyone.

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5 Truths about Becoming a Living Donor

This is from my original 2017 post on the National Kidney Foundation website.
 
…Throughout the donor testing—blood draws, X-rays, a stress cardiogram, CT angiography, lung function test, and more—the nurse coordinator was just a phone call away. She offered gentle encouragement, useful tips (like lidocaine to numb my arm for blood draws), and, thankfully, a sense of humor.  
 
After each test I’d call her nervously to see if I’d passed. How would I really feel if I were disqualified? Would I secretly be relieved? To my surprise, I realized I’d be crushed.
 
So when the psychologist asked if I was sure I wanted to do this, I laughed. “Trust me,” I said. “You can skip to the next question.”

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