A Donation Advocate by Any Other Name

Funny how things take on a life of their own. Less than 3 years ago when I was interviewed at length on “Your Health” radio show and asked to tell my story about donating a kidney to my son in 2006, I was a bit uncomfortable with their description of me as an advocate for living organ donation. Yes, I was passionate about the subject, never passed up an opportunity to talk about it, and was writing a book on living kidney donation, with a live-donor-kidney recipient (Betsy Crais). I’d also written a couple of op-ed pieces, but “advocate” sounded much more significant (and certainly impressive) than whatever I was doing in my own little ways.

But then I ventured out a bit and spoke at a rotary club and a couple of patient workshops. I started writing blog posts sharing my story. I began to use Twitter and Facebook to talk more generally about the 30 million Americans with chronic kidney disease and the dire need for donors—live and dead. So when two local TV news stations interviewed Betsy and me last year about our book in progress and referred to us as advocates, that time the label felt right.

And now the National Kidney Foundation has made it official, inviting me to join its nearly 200 Kidney Advocacy Committee members nationwide. The NKF advocates

  • Bring the patient/family voice to NKF’s legislative priorities
  • Serve on panels and in conferences hosted by various government agencies….

I am honored and deeply humbled to join the ranks of “donation advocates.” There’s work to be done.

Covering Anti-Rejection Meds Should Be a No-Brainer

You already may know that virtually all (yes, I do 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 were required to take those anti-rejection meds for a maximum of 3 years. No way–see first sentence of this post, which points out that virtually all patients have to take them “for the rest of their lives.”

Photo by rawpixel.com on Pexels.com

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.

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.” [https://aspe.hhs.gov/pdf-report/assessing-costs-and-benefits-extending-coverage-immunosuppressive-drugs-under-medicare]

Bipartisan coalitions in both the House and the Senate are poised to introduce legislation soon after the August recess to extend the Medicare drug coverage. 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.

Good News for Living Donors: Financial Assistance!

You may already know that the costs of the donor testing and surgery are covered by the recipients’ insurance. That’s true whether they have Blue Cross or any private insurance, Medicare, or Medicaid (usually—every state is different). That’s great, right? Absolutely, particularly if you have adequate paid sick leave and no additional childcare or travel and lodging expenses, that is, if the recipient’s transplant center is near you. And, fortunately, job security is now guaranteed for living donation under the Family and Medical Leave Act (FMLA).

But what if you don’t have much if any personal sick leave? The good news is that there are growing options. If you’re a federal employee, you’re entitled to up to 30 days paid leave a year for living organ donation. Most states have similarly begun to offer leave for their state employees, but not necessarily paid leave, so if you’re a state employee, ask the transplant center about the specific policy in your state. More than a dozen states are also starting to extend such benefits to private employees. The National Kidney Foundation has a terrific state-by-state list of donor leave laws and tax deductions/credits for living donors.

In general, in recent years (long after I donated to my son in 2006), several new sources of financial assistance have popped up, and several old sources are expanding eligibility and the expenses they cover.

Here are a few to check out:

*National Living Donor Assistance Center  A federally funded program, NLDAC provides substantial financial assistance to potential living donors for out-of-pocket expenses for travel, food, and lodging, and assistance to low-income donors who do not have other compensation or reimbursement. 

Donor Care Network Living donors who make $62,000 or less per year may be eligible for reimbursement of up to 4 weeks of lost wages. Also available: travel and lodging reimbursement, life and disability insurance, and legal representation. The program works with 12 transplant centers across the United States, so donors can get testing closer to home if needed.

Living Organ Donor Network Some transplant centers participate in this initiative that’s part of the American Foundation for Donation and Transplantation. It provides limited life/disability insurance to the living donors who get care at participating centers.

American Living Organ Donor Fund (ALODF) A nonprofit organization founded by a kidney recipient, its mission is to protect living organ donors from out-of-the ordinary medical and financial hardships through education and financial aid.

American Transplant Foundation ATF offers limited donor assistance grants, through a few transplant centers.

Renewal This orthodox Jewish charity provides information and resources for donors and recipients.

American Kidney Fund This huge nonprofit dedicated to fighting kidney disease mainly helps kidney patients but also provides small grants ($100/year) to living donors. It’s not much, but it’s something.

American Society of Transplantation (AST): Live Donor Financial Toolkit Although this is not a source of funds, it’s an invaluable practical resource to help potential donors in the donation process. Discusses costs in detail, what to expect, and risks; also offers ideas and links.

State-specific nonprofit programs are popping up all the time. Here are a couple of major ones. Ask your nurse coordinator about programs in the state where you or your potential recipient resides.

Georgia Transplant Foundation This Georgia nonprofit was founded in 1992. Living donors can apply for a financial assistance grant if either the donor or recipient resides in Georgia.

Iowa Anatomical Gift Public Awareness and Transplantation Fund Iowa residents who are donors can apply for assistance with certain expenses, up to $4,000.

* At this writing there is a movement in Congress, launched by Washington Rep. Jaime Herrera-Beutler, to expand NLDAC’s coverage to include lost wages. Rep. Herrera-Beutler’s husband donated his kidney to their toddler a few years ago. Contact your representative and ask him or her to support these important efforts. Be sure to share your own story with them. 

If you know of other important sources of financial aid for living donors, please let me know: carol.kidneydonorhelp@gmail.com