Written by Martha Gershun, Guest Blogger
No one has ever accused me of being a drug addict. In fact, no one has ever even suggested I drank too much or was impaired in any way due to substance use. I am a pretty reliable, law-abiding, sober person. But in 2017 when I started the process to donate my kidney to a woman I read about in the newspaper, the suspicion of drug abuse almost derailed my efforts.
The very first step in offering to become an organ donor at the Mayo Clinic is filling out an online health questionnaire. One of the questions asks if you have ever used recreational drugs. Ever is a very long time. I had smoked some pot in college, some 30 years earlier. And, more recently, my husband and I had taken a vacation trip to Colorado, where cannabis was legal; I ate some gummies and smoked a joint. So I answered “Yes” to the question. I expected a follow-on question asking for more details, but there was none.
Two weeks later I got a call from the Nurse Transplant Coordinator reporting that my relatively rare blood type (B+) was a match for the donor. The next step would be more sophisticated blood testing to determine if we were also an HLA tissue type match. But that was expensive, and the Clinic wanted me to talk to their social worker first – would I agree to a phone call? “Of course,” I said. I was eager to move forward to see if I could, miraculously, save this stranger’s life.
It took the social worker another three weeks to call. She had lots of questions, including the most surprising: If further testing showed I was an HLA tissue type match, would I consent to see a substance abuse counselor? I was shocked. Nothing in my experience had ever suggested I had a problem with drugs or alcohol. But I agreed. Saving a life is a big deal; I didn’t want to do anything to harm my chances – or my potential recipient’s.
More time passed. I had my doctor draw more blood to ship to Mayo. Then the call that changed my life – I was a perfect match for this patient!
I began working with Mayo to schedule a three-day trip to the Transplant Clinic, a 6-hour drive from my home, for further evaluation and testing. We found a perfect week when my husband could get off work to accompany me (a caregiver is required to accompany potential donors), and they could line up slots for every required appointment. Except there were no open slots for substance abuse counselors; they were at capacity.
The only way this would work was if I agreed to return to Mayo two weeks later, making another 12-hour round-trip and spending another night at a hotel in Rochester, MN. Since insurance companies (whether private or Medicare) only pay for medical and surgical expenses for the donor, not out-of-pocket expenses, I would now have to pay for the original trip – plus another trip.
I was unhappy with the plan, but I agreed. I was determined to donate a kidney if I possibly could. I knew the odds of finding my recipient another match in time to save her life were low.
My story has a happy ending. When I was at Mayo for the first round of appointments, I talked to every professional I saw about the absurdity of asking me to make another overnight trip to return to the Clinic just because they didn’t have enough substance abuse counseling appointments. I must have been very persuasive because I got a phone call that they were waiving that requirement.
But I don’t think it’s much of a stretch to suspect that only happened because I am Caucasian, middle-aged, articulate, a native English speaker, upper middle class, and used to advocating for myself. Someone without my privilege, including the time (I was retired from full-time work) and the money (we have resources) to return to the Clinic for a second time, might well have dropped out of the process before they even made it to those first appointments.
This ridiculous stigma – that anyone reporting using recreational drugs ever in their entire life might not be an appropriate donor — could well mean a patient dies waiting for a kidney.
I have heard from several donors more recently that some clinics no longer ask this question. They rely on blood and urine tests to ensure potential donors are not actively using. I have also heard some transplant clinics now offer substance abuse and other counseling appointments via telehealth to save donors the inconvenience and expense of travel to the hospital.
I hope over time we can continue to evaluate every step of the organ donation process to be sure we don’t let outdated stigmas discourage potential altruists from saving lives.
Martha Gershun is a nonprofit consultant and writer living in Fairway, KS with her husband Don Goldman. Her most recent book, Kidney to Share (Cornell University Press, 2021), with co-author John Lantos, MD, details her experience donating a kidney at the Mayo Clinic to a woman she read about in the newspaper. Gershun serves on the Expert Advisory Panel for the Kidney Transplant Collaborative and serves on the Board of the National Kidney Foundation Serving Kansas, Oklahoma, and Western Missouri.