Happy World Kidney Day–with a shout-out to women!

March 12 is World Kidney Day, and it seems fitting to continue our theme of women and kidneys (two of my favorite subjects). In a recent post, I pointed out that neither gets the respect and attention they/we deserve. It’s mostly because most people just don’t know a whole lot about what they do: in the case of women, we hold up half the sky, as the African proverb says. And kidneys do much the same for the body, quietly keeping it functioning as it should, balancing nutrients, eliminating dangerous toxins, regulating fluids and salt content, promoting bone health. I could go on.

Now how do I tie this back to women, you ask? Let’s consider living kidney donors. Not surprisingly, most are women. When I participated in setting the Guinness World Record for largest gathering of living donors in April 2018, it was clear that the vast majority of us donors there were women. Now, it’s tempting to say that’s all due to our natural empathy and nurturing instincts. I do believe that’s partly responsible, but I know it’s more complicated than that.

For one thing, donating a kidney, like any major surgery, usually entails taking off work for at least a couple of weeks, if you have a sedentary job as I did (editor/writer). If you’re a laborer, however, because of a restriction on lifting anything over 10 pounds for about the first 6 weeks after surgery, that obviously could mean a lot longer interruption.

Donors who are lucky enough to have sufficient paid sick leave (or any at all) don’t have to worry about lost pay. But for anyone who doesn’t, that’s a major road block to being a live donor. The reality is that, in a lot of families, it’s still harder to get by without the man’s earnings. The National Living Donor Assistance Center has been offering much-needed financial help with travel and lodging costs for some donors who need to travel to their recipient’s transplant center. It’s a wonderful program, but it hasn’t covered lost pay and other uncovered expenses. Now there’s a plan to significantly expand that assistance to cover a donor’s lost pay and major “incidental” expenses like child care and elder care. But it needs a major boost in funding from the House Appropriations Committee. Please contact your representative and tell him or her to get behind this important effort. Helping living donors helps to save lives.

Protecting Living Donors from Discrimination

This week I met with North Carolina Rep. Verla Insko, my state legislator, and Katey Cipriani, the National Kidney Foundation’s regional community outreach director. The topic was living donation, of course. We were seeking Rep. Insko’s support for a Living Donor Protection Act in our state, as we had with other legislators just a few months ago at the legislature. The General Assembly is between sessions now, so this meeting was more informal, a pleasant chat in a quiet local coffee house in Chapel Hill. I was there to share my story of donating to my son and offer some personal insights into why we need to protect living donors from discrimination.

Katey (far right) and I (far left) with fellow donor Dolores McGrath and Young Bae, Rep. Insko’s legislative assistant, who set up our meeting with Rep. Insko.

So why might donors ever be discriminated against for saving a life? Let me give you an example. To be approved as a living donor, I had to pass numerous tests that looked at my heart, lung, kidney, general fitness, myriad blood tests… Thirteen and a half years post donation, my kidney function is fine and I’m still in excellent health at 71. I’m active, enjoy Zumba a few times a week, and walk regularly. Nothing remarkable there, but I have donor friends in their 50s and 60s who run marathons. And yet…

If we apply for a life insurance policy tomorrow, there’s a chance an insurer could either deny coverage or up the premiums. Some cap coverage much lower than requested. Doesn’t make sense, does it–not to mention that it’s morally indefensible? It doesn’t happen often, but a study found that about one in four living donors had experienced some type of insurance discrimination–mainly due to misinformation about the negligible impact of living with one kidney. Did you know that many healthy people were born with one kidney? Donors do lose some kidney function, but the other kidney gets plumper and takes on part of the job of the “missing” one. As a result, donors have sufficient function to live normal productive lives.

Among other things, a state Living Donor Protection Act would prohibit insurance companies from denying or limiting coverage–or charging higher premiums–for life, disability, or long-term care insurance for living donors. The proposed federal LDPA, which has been reintroduced in Congress and has dozens of sponsors, would also address job protections and a few other issues that can be disincentives to donation. With nearly 100,000 people waiting for a kidney from a deceased donor, removing those disincentives is critical.

Most people don’t realize how widespread chronic kidney disease is–it’s more common than breast cancer or prostate cancer. As I told Rep. Insko, I really think most people are no more than two degrees of separation from someone who’s had or needs a kidney transplant: a friend of a friend, a neighbor’s cousin, a PTA member’s spouse…

Rep. Insko listened attentively and asked how other states have approached the task of protecting living donors: How many have relevant laws (11, but several more are in process)? Which one do we want to model North Carolina’s on? Did those states encounter any pushback? What concessions did they have to make to get it passed?

She also had several helpful suggestions of people in the General Assembly to approach, including those who had some ties to health care. She promised to take a close look at the related materials Katey had brought and was interested in learning more. As it turns out, we have time–most new legislation can’t be introduced until the 2021 session of the General Assembly.

I’m learning that advancing legislation is a slow, stop ‘n start process. But we’re making progress, gathering support, and picking up some tips along the way.

Getting Closer to Extending Drug Coverage for Transplant Patients

A while back I wrote here about the insanity of cutting off lifesaving drug reimbursement for kidney patients. I’m happy to report some real progress on that front. At long last, a bill to extend Medicare coverage for kidney transplant patients–and Honor the Gift of life–is ready for a committee hearing this week! HR5534 is scheduled for a hearing in the House Subcommittee on Health. Please contact your members of Congress and urge them to support this crucial and common-sense bill. And sign the pledge to spread the word: https://honorthegift.org/act/

It’s got a long multi-syllabic name–Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act–but it’s really pretty simple. It safeguards patients’ access to critical lifelong medications–that is, long after the 36 months currently allowed for patients under 65. Oh, and this is hardly a measure that will break the bank. On the contrary, it will save Medicare an estimated $300 million over 10 years!

Photo by JESHOOTS.com on Pexels.com

How? Because antirejection meds for transplant patients keep people healthy and productive. Patients who don’t have other drug coverage and can’t afford their expensive medications (full cost is roughly $3,000 per month) often try to do without or cut back. The tragic result is death or the need for dialysis, which costs the government about $90,000 per year. Not only is dialysis far more expensive than drug reimbursement, it comes with a much worse prognosis. People on dialysis have a 5-year survival rate of 35% (contrast that with a transplant patient’s 97% survival rate 5 years out). Those lucky enough to get off dialysis and have a transplant [see my son’s candid story about life with a transplant vs. being on dialysis] naturally desperately try to protect that gift.

About 113,000 people in this country are on waiting lists for a lifesaving organ–nearly 100,000 of them are waiting for a kidney. As a society, we too need to do all we can to protect that precious gift.

Bonding with State Legislators

The idea of meeting with state legislators to push for protections for living donors sounded a bit intimidating at first. I’d often emailed legislators and committee members, of course, and called my members of Congress about a national Living Donor Protection Act, but in-person meetings were a whole new ballgame. That’s what advocates do, though, right? So I took a deep breath and started calling representatives to whom I’d emailed information about a Living Donor Protection Act for North Carolina.

I called. And I called again. And then, amazingly, one by one, I started connecting with their warm and helpful legislative assistants, one of whom thought I was “awesome” for donating my kidney to my son 13 years ago. Little by little, I managed to set up meetings. I’d be joined by Dolores McGrath, a fellow living donor/NKF Kidney Advocacy Committee member, and Katey Cipriani of NKF Carolinas. It was starting to feel like a semi-official delegation.

For my first effort, I’m happy to report a reasonable success. The people we met were so pleasant and receptive to our “pitch” that the experience reminded me a bit of selling Girl Scout cookies when my daughter was a kid. Hardly a tough sell. Not really surprisingly, nearly everyone we spoke to had some direct or indirect connection to the topic.

After meeting with Rep. Willingham, we posed for a group photo. Left to right: Joe and Dolores McGrath, Rep. Willingham, me (dwarfed by everyone else!), and Katey Cipriani from NKF.

My representative, Verla Insko, wasn’t in town but we met her legislative assistant, whose brother is a nephrologist; he’s long been hearing stories of the critical need for public education about kidney disease. Another shared that the tragic death of a young woman she knew had saved several lives. Both she and her boss are ardent supporters of organ donation in general. Another has a mother with kidney disease–we compared notes about a beloved nephrologist my son saw years ago.

Rep. Shelly Willingham, who was at the legislature this week and was kind enough to give us a half-hour out of his busy day, said diabetes runs in his family. Fortunately, his diabetes is well controlled now, without needing to take insulin shots, because he “did everything the doctors told me to do.” Most people probably don’t know that that’s possible (I know I didn’t!). Diabetes and high blood pressure together account for three-quarters of the cases of chronic kidney disease, so when people with diabetes follow doctor’s orders, they’re also helping to prevent kidney disease.

We were joined by Dolores’s husband, her recipient, who also has diabetes. His kidney disease went undiagnosed for a long time, and by the time it was discovered, his kidneys were failing and he had to start dialysis. They both shared what a toll his years on dialysis had taken.

Although Rep. Verla Insko wasn’t in Raleigh, we met with Young Bae, her legislative assistant.
We were also glad to meet Margaret Martin, Rep. Michael Wray’s research assistant, and Pam Pate (not shown), Rep. Phillip Shepard’s legislative assistant.

Exchanging personal stories of health struggles and triumphs not only helps to raise awareness, it also creates bonds. We left feeling that we had made a true connection and sincerely believe we have the representative’s support. He plans to reach out to another legislator in a bipartisan bid to protect living donors in our state. We’ll be going back to the General Assembly when it reconvenes in January and are optimistic that we can make some real progress. (Still, I’d love to have a bite of Thin Mints now…)

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 can

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

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.”

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.

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.

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