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.

Health Information Is Power!

Before my son was diagnosed with chronic kidney disease in 2004, I knew as much as most people about the subject—which is to say, almost nothing. Not sure if I even knew you can live a normal life with one kidney. Before he developed kidney failure, and I started the evaluation process for donating my kidney to him, I knew almost nothing about living donation. Now, fortunately or unfortunately, I know more than most people about these things and have made it my mission to help people learn before a crisis hits—in the hope, ideally, of preventing more such crises.

So now I find myself in a similar situation concerning liver disease and liver donation. No, thankfully, it’s not my own family this time, and I’m not considering being a living donor again in my 70s, but as always, it’s because of someone I care about. You may have read here that my friend and co-author, Betsy, needs another kidney transplant after 15 years. That was bad enough. For a while though, a few months later, there was good news when she’d found a living donor and was scheduled to have the transplant in December. Unfortunately, the good news gradually became more tentative as her health began to deteriorate and the transplant was postponed.

And now the biggest shock of all came last week when she/we learned that she also needs a liver transplant. After being stunned and saddened, I began my new education about livers and liver donation. All I knew was that, since the majority of people on the deceased-donor waiting lists need a kidney, the wait for a liver is much shorter: about a year versus 3 to 5 years (often 5-10). As for living liver donation, I knew you can donate part of your liver because it grows back but that it’s a bigger deal than donating a kidney–it’s a more serious surgery, with a longer recovery.

However, by reaching out to the Facebook donation/transplant community, reading articles, and searching online, I’ve already learned some very encouraging information. Did you know that you can donate two-thirds of your liver and it regenerates so much that within a few months, both you and your recipient have a healthy-sized liver?

Photo by Vidal Balielo Jr. on Pexels.com

I also learned that the donation surgery is easier than it used to be and that some centers have started to use minimally invasive laparoscopic surgery as is done for kidney donors. That means a much smaller incision, far less pain and blood loss—and a quicker recovery. That should make it a little easier to think about asking people to consider donating.

That’s all good news, not just for Betsy and her friends and family, but for all patients and their families and friends. Betsy certainly has a lot to deal with and is facing many difficult decisions and waiting periods. But she’s an amazingly positive person and is learning all she can and asking questions so she’ll be as informed as possible. As we always say, information is power—never more so than in matters of health.

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 Cold But Successful Kidney Walk

This weekend my husband (Neil), son (Paul, my recipient), and I participated in our umpteenth National Kidney Foundation Triangle Kidney Walk [see my post on our long history of kidney walks], in Durham, NC. We were thrilled to learn that it set a record for donations: more than $97,000, with money still coming in. I think it broke another record, too–this may have been the coldest one (I know it’s the only time I’ve ever worn a winter coat over my Kidney Walk tee shirt).

Because of the damp chilly weather, the Walk organizers decided to shorten the route. What was supposed to be a 2.4-mile loop was reduced to just 1 mile total. True, my fingers were numb even before it was over, but we were still a bit disappointed.

It was long enough though to fall into conversation with a woman doing her first Walk. She’d driven all the way from the Pinehurst area because her mother had died recently from kidney failure, and she felt she had to do something. Like so many of us, she’d known very little about kidney disease before her mother started dialysis 4 years before. A few family members had planned to come along, she said with a little annoyance, but one by one they’d backed out. To her credit she came alone.

We talked about how little is known about kidney disease and how important it is to focus more attention on education in addition to research. We learned a startling statistic before the walk started: the U.S. National Institutes of Health, which is the main source of health-related research in this country, spends $568 per patient/year on cancer research. Kidney disease research accounts for…$29 per patient/year! I thought I’d heard it wrong and had to double-check before finalizing this post. And yet chronic kidney disease affects more than 30 million Americans. It’s yet another reminder of how important that new public awareness campaign is [see my previous post].

We saw lots of familiar smiling faces at the walk, many peering out from under wool hats. Friends from Donate Life NC/WELD (Women Encouraging Living Donation) were working a table this year. One of them, Dolores McGrath, a fellow NKF Kidney Advocacy Committee member, would be joining me for my first “official” visit to the state legislature this week. (More on that in my next post!)

That’s Dolores McGrath, center; and Deanna Kerrigan, Donate Life NC/WELD director, right.

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.

Donate Life Month Quiz: 5 True or False about Dialysis

True or false?

1-People with kidney failure have dialysis every few weeks.

False—For hemodialysis at a dialysis center, the standard is 3 times a week; patients who have some form of dialysis at home may do it 4 to 7 times a week.

2-Dialysis sessions usually last 3 to 4 hours at a time.

True—The average session at a dialysis center is 4 hours on the machine. (That’s not counting the weigh-ins and pre- and post-blood pressure readings. ) Again, people who do it at home may vary the amount of time, including an option of doing it overnight while they sleep.

3-Dialysis can approximate about half of kidney function.

False—As advanced as it is, dialysis accomplishes only about 20% of normal kidney function.

4-People on dialysis can skip a few sessions if they’re busy or go on vacation.

False—Skipping a session very occasionally is not usually a problem, but skipping several sessions is extremely dangerous and can be fatal as toxins build up in the blood. Patients who go out of town can try to arrange in advance to have sessions at a dialysis center at their destination.

5-Dialysis is an equally effective alternative to transplant for someone with kidney failure.

False—When possible, a kidney transplant is by far the better option. After one year of treatment, patients on dialysis have a 20-25% mortality rate, with a 5-year survival rate of 35%. People who receive transplants have a 3% mortality rate after 5 years.*

*University of California at San Francisco. The Kidney Project, https://pharm.ucsf.edu/kidney/need/statistics