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.)

Photo by Miguel u00c1. Padriu00f1u00e1n on Pexels.com

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 nkfcares@kidney.org .

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.

Still Advocating After All These Years

Last week I had a day of back-to-back virtual meetings with congressional staffers–plus one congressman!–to talk about the Living Donor Protection Act and kidney health in general. Hard for me to believe that this was my fifth such event. Unlike most of the others I’ve been a part of, this one represented a partnership of 22 kidney-health organizations–including the National Kidney Foundation, of course–led by the American Society of Nephrology.

The good news: The LDPA is closer to being passed than at any time since it was first introduced in 2014.

The bad news: With Congress adjourning soon, if it doesn’t make it across the finish line now, we’ll have to start all over in the next session of Congress. (That thought is not only depressing but overwhelming because of logistical issues that I’ll save for another post.) Consequently, our “ask” was not just for cosponsorship of the bill by those members who hadn’t yet signed on but for help from all of them to get the bill to the floor.

As I related here after one such day of meetings, I’ve come to understand what the trainers have told us repeatedly: it’s the personal stories that will stay with and move a staffer or member of Congress. They’ve had a gazillion meetings and heard all the appalling numbers before: that nearly 100,000 Americans are waiting for a kidney and at least 13 die every day because they didn’t get one in time. They know all that on an intellectual level. It’s not the same as hearing what it means for a mother to see her son grow more and more listless and depressed as he struggles through long months of dialysis.

I was joined by an impressive group of fellow advocates who represented an interesting range of perspectives: Brenda Johnson, from the Veterans Transplantation Association, who told of veterans struggling with kidney failure or having to fight with insurance companies to get life insurance if they donate; Lauren Drew, NKF’s very savvy governmental affairs director, who’s been my mentor for such meetings since I first became a Kidney Advocacy Committee member; Dr. Hostensia Beng, a pediatric nephrologist, who shared heartbreaking stories of parents trying desperately to find a kidney donor for their young child; and Dr. Gentzon Hall, a nephrologist/genetics researcher at Duke Medical Center (just down the road from me), whom I’d met last year when we were on the same advocacy team. He emphasized the dire need for more research funding.

The highlight of the day had to be our meeting with Rep. Gregory Murphy, a former transplant surgeon. He knows firsthand how transplant transforms lives, and he promised not only to cosponsor the Living Donor Protection Act but to do all he could to help move it across the finish line before Congress adjourns.

It’s soo close. C’mon, LDPA!

For related posts and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.

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.

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…)