The Living Donor Protection Act (LDPA) of 2021 was first introduced in Congress back in 2014 and has been making its way through successive congressional sessions ever since. The act would protect healthy living donors like me from discrimination by insurers (including rejections and higher premiums) and would protect the job of an employee who takes time off work to save a life. In the meantime, several states have tried to adopt their own, often improving on the federal version.
My state, North Carolina, has been considering passing an LDPA for a few years, and this is the closest we’ve ever gotten. The bill has made it through two committees–health and finance–and the insurance committee is next to take a closer look. It includes not only protections against discrimination by insurance companies but also provides paid leave for state employees (I used to be one!) and tax credits.
Last month, when my National Kidney Foundation liaison asked me to testify or send a letter of support to the Finance Committee, I hesitated because my experience was not a dramatic story of financial ruin or loss of coverage. But on further reflection, I thought that mine might be worth describing precisely because it was so banal. I decided to write a letter sharing my story so that legislators might better understand what a “best-case scenario” looks like.
Here’s what I wrote:
With roughly 3,000 people in North Carolina waiting for a kidney from a deceased donor—most of them wait several years—living donors hold the key to reducing the tragic kidney shortage. Fifteen years ago this month I donated my kidney to my adult son. I would do it again in a heartbeat, because he’s my child. If we want to encourage and support people with less personal motivation to donate—friends, neighbors, colleagues, faith-community members—we need to start by eliminating the many disincentives.
My family was fortunate to live close to one another and near the UNC transplant center. Many people live hours from a center and have to devote a full day going to appointments or visiting at the hospital. I had a smooth recovery and could have gone back to work in 2 or 3 weeks if it were just a matter of my own health. But like so many other living donors, my recipient was a family member, so I was also a caregiver. My family was devastated when our son needed emergency surgery a week after his transplant. His recovery was slow, and he lived with us for about 2 months. I missed work for much of that time.
My husband and I shared family responsibilities that included our other child–a teenager with her own adolescent needs–and my elderly father, whom we had moved down to our town. We both maxed out our paid leave time. With my job, again I was fortunate: I had a supportive supervisor, short-term disability leave, and an employer with a shared-leave policy that enabled my kind colleagues to donate their leave time. I cobbled together partial coverage. My husband did not have the benefit of shared leave donations. Not many potential living donors have such luxuries. In fact, many of the people on the transplant lists have low incomes, and many of their families and friends have little ability to ride out periods of missed pay. So these patients languish on the wait lists still longer.
Personally, I was never discriminated against for life insurance, but I know healthy donors who have been turned down by multiple companies or have seen their rates go up.
My son was very lucky to have a live donor. If I hadn’t been able to donate to him after he’d spent nearly 2 long years on dialysis, he could have faced another 5 years tethered to a machine 3 times a week, draining his energy, his time, and his spirit. Incidentally, you may not know that the 5-year survival rate on dialysis is only a little more than a third.
My family’s story is what a best-case scenario looks like. At an extremely difficult time for our family, we at least had everything going for us: our location, adequate resources, and a supportive employer. I implore you to help someone else’s son avoid that long, dangerous wait for a donor by doing whatever you can to protect living donors and remove disincentives for donation: please support and expand the NC Living Donor Protection Act.
If your state is looking at such a bill, consider similarly telling your story–whether you’re a living donor or a family member.
For more information on this and related subjects (and to learn more about my upcoming book), please explore the blog archives and the rest of my website at kidneydonorhelp.com