When Prairie Village resident Stacey Donovan came across an article on kidney transplant waiting times a few years ago, she could hardly believe what she read. With thousands of patients across the country looking for a donor match, it’s unfortunately common for people to die waiting for a transplant.
A short time later, she found a personal journal online by a young man who described the experience of being on dialysis. His hopelessness hit her hard.
“People die on the waiting list every day,” she said. “I thought, ‘Okay, I’m healthy, this is something I could do.’”
She told her husband and her parents that she wanted to donate a kidney. Worried about the risks to her health, they pushed back.
“They were pretty against it,” Donovan said. “One of the things that gave me — and them — an extra measure of assurance was the [Affordable Care Act]. Before it became law, people who donated a kidney were listed as having a pre-existing condition, so you could easily get turned down for insurance.”
Both Donovan and her husband have health insurance through their employer, Hallmark, and Donovan said she’s always felt relatively secure in her job. But knowing that the ACA would ensure she had access to coverage in the event that her work-sponsored insurance disappeared for some reason made it easier for her family to accept her decision to make a donation.
In 2014, she traveled to Barnes-Jewish Hospital in St. Louis and had one of her kidneys removed. Doctors transplanted that organ into a man who lives in San Diego. As a way to show gratitude for Donovan’s donation, the man’s wife agreed to donate her kidney to a matching transplant candidate. Donovan’s donation set off an organ donation chain that eventually led to seven total donations.
Now, more than two years later, as Republican lawmakers take steps toward repealing the ACA, Donovan is among a group of local residents lobbying Kansas officials to consider the consequences of getting rid of the law without a replacement plan. Donovan was one of the Kansas City area residents who submitted their stories to the group Indivisible KC, which compiled them into scrapbooks that they delivered to the local offices of U.S. Sens. Pat Roberts, Jerry Moran, Claire McCaskill and Roy Blunt.
“My biggest concern isn’t about me if the ACA went away,” Donovan said. “It’s about the impact it would have on altruistic organ donations.”
Donovan worries that other people making the calculations about whether to take the risk of donating an organ may be turned off by the prospect of being denied coverage for having a pre-existing condition.
“I didn’t think I would have a problem, but it was extra assurance that if something did happen, or I lost my job, I would still be able to get coverage,” she said.
The full Kansas scrapbook put together by Indivisible KC can be found here. Pages featuring NEJC residents are copied below (click each image to enlarge it if you can’t read it on your display):