May 20 was a big day. The committee that advises the federal agency with the power to expand financial aid to living donors held a meeting and heard a dramatic plan from the National Living Donor Assistance Center (NLDAC). The plan would not only markedly expand eligibility but would extend coverage for significant living donor costs like lost wages and childcare and eldercare expenses. Those essential expenses so often stand in the way of would-be donors’ acting on their desire to donate (and save a life).
The Advisory Committee on Transplantation accepted public comments in advance of the meeting and dedicated some meeting time to hearing from people supporting expanded benefits for live donation. I prepared my comments and sent them to the committee last week. During the online meeting, I listened excitedly to the impressive NLDAC presentation and patiently waited to speak. Alas, because of technical difficulties and the committee’s being behind schedule, most of us never got to deliver our remarks live. This is what I was going to say:
Dear Committee Members:
I’m a living donor in North Carolina. Thirteen years ago I donated my kidney to my 26-year-old son. We were fortunate to live close to one another and near the UNC transplant center. 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; we were all 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 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 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 they languish on the wait lists still longer.
NLDAC’s coverage of travel and lodging expenses for donors has saved lives by enabling people to donate who would not have been able to otherwise. The prospect of lost pay affects—that is, discourages—even more potential donors than travel issues do. My son was so lucky to have a live donor. If I hadn’t been able to donate to him after he’d spent nearly 2 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, the 5-year survival rate on dialysis is only a little more than a third.
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 raising the income cap and extending benefits to cover lost wages and related costs. Thank you.
I’ll have more details on the NLDAC recommendations when we learn how HRSA (Health Resources and Services Administration, part of Health and Human Services) decides to proceed.
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