Waitlist Zero opened our doors a year ago with the mission of supporting living donors and living donation. It was founded by two kidney donors: myself and Thomas Kelly. Before then, no group represented kidney donors first and foremost. And believe me, it showed.
It’s been thirty years since the National Organ Transplant Act was passed, sixty years since the first living donation. But donors still lose wages to donate kidneys. We still have no guaranteed health insurance, still receive no follow-up care after the first twenty-four months. The donation experience at far too many hospitals is confusing and inconvenient: too often being a donor requires an act of will just to fight through the bureaucracy. We deserve better.
But, honestly, if this were only about how kidney donors are treated, I would never have started Waitlist Zero. Like most donors (more than 95%!), donation is a decision I’d make again. I knew the system was imperfect; I knew there were risks. But what motivated me was saving the life of the person I gave to.
Patients with kidney failure are the real victims of our dysfunctional system. The numbers alone are staggering: 100,000 patients on the waitlist; as many as 80,000 more patients who could use a transplant but aren’t listed; a shortage of 20,000 transplants each year; six out of seven waitlisted patients unable to find a living donor.
But what matters more are the lives and families affected. On a Facebook support group this weekend, I saw a man post about his husband who died on dialysis. He loved his life. Together they traveled to 16 countries in 18 years, and adopted many pets. I don’t know if he could have used a transplant, but so many people could.
As a donor, I know my recipient, John, will likely need another kidney. And before he does, we need to build a transplant system that doesn’t take deadly shortages as a given: one of transplant support that makes transplants easy to ask for and easy to give.
That’s why the interests of donors and recipients are inextricably linked. In our first year, we focused our advocacy efforts primarily on increasing living donation. We brought together a Coalition of sixteen member organizations united by our goal of promoting living donation. We signed up nearly five hundred kidney donors to our letter in support of better transplant policy. We brought together the most important groups in the field to meet with the federal government and persuade them to open up $9M worth of grants to living donation.
We are proud of our first steps as an organization, but in 2016 we want to broaden our focus and connect more fully with the donor community. Last year, we asked more than 180 donors about their experiences because we want to hear what you had to say. Our new Project Director, Steve Rice, went through all these responses and pulled out the common themes. He did a great job, and after the holiday we’re going to publish his piece about what donors are telling us about their transplants.
We’re also going to start featuring kidney donor stories. Starting next week, we’ll launch the donor portrait series. You’ll see a blog post a day, each featuring the story of a living kidney donor. Taken together, the portrait series will frame the diversity of motivations, journeys, and post-donation reflections of donors. By the end, we’ll host each story on the Donor Stories section of our website.
But this is just the beginning. We need to make the voice of kidney donors heard in the transplant field. To do that we need your help. If you’re a kidney donor, we need your passion and your advice, your criticism and your support. We need to help the transplant field hear everything you have to say.
If you’re not a donor, we need you too. We need recipients; we need families; we need patients on dialysis. We need everyone who wants to do something, however small, to save a life.
If you want to fight to support living donors and living donation, sign up here. We need you.