I want to give someone my kidney. Not because a family member needs it, nor because I have a specific person in mind. Inspired by my colleague Dylan Matthews, I’ve decided to give my kidney to a total stranger suffering from kidney disease.
For me, the math is simple: I have two functional kidneys, and I most likely only need one — so this wouldn’t be a big loss for me after the surgery and painful recovery, given that 98 or 99 percent of kidney donors don’t suffer from kidney failure. But for the person who gets my kidney, it would be a lifesaver — extending that person’s life by as much as a decade or more.
This math may have gotten a little more complicated on Thursday, when Republicans in the House of Representatives (but not the Senate, at least yet) voted to repeal Obamacare with the American Health Care Act.
Being a kidney donor, it turns out, is a preexisting condition. The AHCA would make this much more significant: It would severely weaken Obamacare’s ban on denying health insurance to people with preexisting conditions — even allowing states to get waivers so insurers could charge people more based on their medical history.
While I have good health insurance through my employer right now, that could change in the future. I don’t know what I would do in that kind of situation as a living kidney donor. Would my premiums be too high? Would I be effectively priced out? I now have to account for this in my math.
Donating a kidney is relatively safe
I signed up to donate my kidney a few weeks ago, shortly after Dylan wrote his article about why he donated his kidney. (Read it. Seriously.) I was truly inspired.
As Dylan noted, donating a kidney isn’t totally risk-free, but it’s pretty safe:
The risk of death in surgery is 3.1 in 10,000, or 1.3 in 10,000 if (like me) you don't suffer from hypertension. For comparison, that’s a little higher and a little lower, respectively, than the risk of pregnancy-related death in the US. The risk isn’t zero (this is still major surgery), but death is extraordinarily rare. Indeed, there’s no good evidence that donating reduces your life expectancy at all.
There are occasionally complications in the hospital post-surgery, but the vast majority of complications that do happen are relatively minor, like a urinary tract infection or a fever. The most significant risk is the increased rate of preeclampsia (pregnancy-related high blood pressure and organ damage, often requiring premature delivery) in people who become pregnant after donating; giving increases the incidence from 5 percent to 11 percent.
The procedure does increase your risk of kidney failure — but the average donor still has only a 1 to 2 percent chance of that happening. The vast majority of donors, 98 to 99 percent, don’t have kidney failure later on. And those who do get bumped up to the top of the waiting list due to their donation.
Meanwhile, the benefits for the recipient are huge: “The recipient gains about a decade of life, on average. They get to see their children and grandchildren grow, to spend more time with their partner and their friends, and to escape a painful, exhausting procedure that would otherwise consume half their days.”
This doesn’t mean everyone has to donate a kidney, of course. (That would produce way more kidneys than we need.) But at least for me, it seems like a small trade-off compared to the potential gains.
Being a kidney donor is a preexisting condition
Still, one thing surprised me as I was chatting with the kidney donor advocate on my case. When we were talking, she let me know that being a kidney donor would make me someone with a preexisting condition. She noted that Obamacare protected me from discrimination in health insurance, but a preexisting condition could still affect my access to other kinds of insurance, such as life insurance, where discrimination based on preexisting conditions isn’t banned.
Now, however, there’s a chance Obamacare will be repealed, rendering its protections in the health insurance market moot. So my new condition could make my premiums higher. It could get insurers to limit my coverage options. It could let insurers effectively deny me coverage.
After all, they’ve done this kind of thing in the past. As the New York Times reported, Radburn Royer, who gave his kidney to his daughter, struggled to get private health insurance in 2012 (before Obamacare’s rules took effect in 2014) because insurance companies considered him to have “chronic kidney disease, even though many people live with one kidney and his nephrologist testified that his kidney is healthy.”
Preexisting conditions are often thought of in two ways: They’re either conditions someone couldn’t prevent or they’re conditions a person brought on themselves via irresponsible behavior. I take issue with the latter characterization (see: Aaron Carroll at Vox), but this is how discussions on preexisting conditions are generally framed.
But kidney donations show there’s another possibility: Maybe a person brought the condition on themselves through good behavior. And now they might be penalized for it.
This is obviously absurd. It’s effectively punishing people for doing something that’s unquestionably good, something that’s literally saving another person’s life. But it’s how the system works.
There have been attempts to fully fix this in the past. For example, the Living Donor Protection Act, which is in front of Congress right now, would stop life, disability, and long-term care insurance companies from denying coverage, limiting coverage, or charging higher premiums to living donors. (The bill doesn’t include health insurance, since it assumes Obamacare takes care of it. But perhaps it would be amended if Obamacare was repealed.) This bill has been introduced multiple times in the past few years.
But so far, these kinds of proposals have gotten nowhere in Congress.
The result is likely fewer people donating. A 2006 study by a transplant advocacy organization found that “39% of [transplant] centers had eligible donors decline donation due to fear of future insurance problems.” Maybe that number has declined since Obamacare’s passage, but, at the very least, insurance problems seem to be a big driver of eligible donors declining a donation.
I have to admit that the situation with Obamacare has given me a bit of pause. I’m still going to go forward with my kidney donation, because I think it’s the right thing to do. But I’d be lying if I said the AHCA won’t be on my mind as this process moves forward — and I’m sure there are other people in a similar position.
