Kidney disease isn’t sexy. Dialysis is totally misunderstood. ESRD sounds like a college radio station.
I’m talking about End Stage Renal Disease. In spite of being the ninth leading cause of death in the U.S., people don’t talk about renal disease. Unless you’re John Oliver.
John Oliver, the political talk-show host of “Last Week Tonight”, has a gift. He can take the most snooze-inducing topics and present them with the frivolity of goats screaming through the chorus of a Taylor Swift song. He did just that on a recent episode of “Last Week Tonight,” devoting an entire segment to the business of kidney dialysis.
“I know that right now you’re probably getting ready to push the button on your TV remote marked ‘Dear God Literally Anything Else’,” he began before launching into an examination of the single health issue that accounts for 1 percent of our federal budget.
Later in the segment, Oliver mentions “truly amazing people” who donate their own healthy kidney to help combat the kidney shortage. That caught my attention. I did that.
A little over six months ago, I donated my left kidney at Thomas Jefferson University Hospital to my closest friend, Octavius. At the age of 34, Octavius had stage 4 kidney disease, was nearing the necessity of dialysis and was facing the imminent possibility of death. Thanks to my left kidney, he is now healthy and expecting his first child with his wife Alexis.
We’re both doing well after the transplant. I’m back in my workout routine at the gym. I’m rebuilding my stamina, but I haven’t lost my physique. Two weeks after the surgery, I returned to work in Old City where I run Indy Hall, a co-working community that has an incredibly important place in my heart. Just one month after the surgery, I was back on-stage with Ignite Philly, and I returned to hosting drag and burlesque shows. Meanwhile, Octavius and I see each other at least once a week to record our podcast, “Comic Book Junto”. We’re approaching the 90th episode, which is absolutely wild to me. We’ve only missed one week of the show, that was the week of the surgery.
Back in 2015, I couldn’t tell you what a kidney did. I didn’t know how organs in my own body functioned, let alone the fact that they fail to function for 31 million people in the U.S.
Today, as a living donor who fears the loss of affordable health care under the looming shadow of the AHCA, I can tell you lots of things about kidneys. I can tell you that 97,000 people are currently waiting for a kidney transplant, a surgery that can hold off death or costly dialysis for upwards of 10 years. I can tell you living donors aren’t superheroes, they’re everyday people.
But there are undeniable barriers to living donation. Lack of information is a big one. When I shared the news that I was going to donate, well-meaning but misinformed friends said things like you know you can never drink alcohol again? (not true), people who give their kidneys die earlier (nope), and even you won’t be able to walk upstairs (really?).
Another major barrier to living donation is cost. A 2013 study in the American Journal of Nephrology found socioeconomic status to be the biggest predictor of willingness to donate with lower income people being the least likely to donate. Bottom line: Donating an organ isn’t cost neutral. Octavius’s insurance and federally-funded Medicare covered my testing, surgery and hospitalization. I was fortunate enough to be able take a little over a week off from work to recover without any penalty or lost wages, but I know not everyone can afford that or have supportive employers. Other factors to consider include travel, childcare and housing costs during recovery, all of which aren’t covered.
And then there’s that looming shadow over our healthcare system, the American Health Care Act that passed the House of Representatives two weeks ago. The proposed bill has the power to overhaul protections guaranteed by Obamacare, leaving anyone with a pre-existing condition vulnerable to increased costs for coverage or the potential to lose their plans entirely. Being an organ donor is a pre-existing condition. Go figure.
People often ask me why I donated my kidney to my friend. The answer is always the same—Octavius is my friend and I didn’t want to lose him. I’m also a curious person who was willing to learn about the program, procedure, and implications of life with just one kidney. And then I made the educated decision to donate.
I’m not saying organ donation is a walk in the park. The decision to be a donor isn’t one to take lightly. I can tell you, though, that it is a way to make the world better, and maybe even save the life of a person you love. It is something that as a society we should unequivocally support. In the meantime, the very least we can do is talk about. Thanks for starting the conversation, John Oliver.
Want to help?
The American Living Organ Donor Fund is a helpful volunteer group working like hell to cover blindspots and costs unforeseen by Medicare.
The Living Donor Protection Act, introduced in the House this February, would prevent insurance companies from denying coverage or charging higher premiums to living donors, and would allow donors to use the Family and Medical Leave Act to recover from surgery without fear of losing their jobs. The bill is currently in committee and can use your support.