 |
| Harrison Roberts |
More than 5,000 Americans died waiting for a kidney transplant in 2025. About a dozen a day. One of them was my first cousin Harrison Roberts.
He was a rambunctious little boy. My earliest memories of Harry are him bouncing on my back at our grandmother's house on Thanksgiving. He was a hefty kid, so that took some indulgence on my part. But I'm seven years older. I managed.
His father Bill died when Harry was 15. Cancer. Then 20 years ago Harry got cancer himself — colon cancer, Stage 4. Doctors told him to go home, get his affairs in order and die.
That wasn't acceptable to Harry, in his late 30s, with two young daughters. He fought, enduring intensive rounds of chemotherapy.
Harry lived near Boston. Years would pass when we didn't speak. But I happened to be in town doing research around 2005 and visited him. We spent a few hours at Mass General while he underwent chemo. It wasn't a big deal, to me; saying goodbye seemed the decent thing to do.
I didn't realize that when you get cancer others tend to avoid you. Harry later told me he had friends who were reluctant to step inside his house. Like they'd catch it or something. We were closer after that.
Harry beat the cancer. But the chemo fried his kidneys, and they began to fail. For the past four years, he was on dialysis.
Dialysis forces a person to sit in a chair three hours at a stretch, five days a week. Harry made calls, often to me. We talked about books, politics, family, everything. We spoke almost every day.
Sometimes we ran out of things to say and would just silently sit for five or 10 minutes, the phone line open. I'd hear ambient sounds from the hospital or dialysis center, which Harry once described as "a cross between a medical clinic and a bus station."
He needed a kidney. Harry had friends and relatives line up to offer one — at least six people. We were all rejected.
Harry's theory was that Mass General didn't want to risk reducing its success rate by giving him a kidney. He'd not only had cancer but a quadruple bypass. Dialysis erodes your heart. If he got a transplant and died, it would lower Mass General's batting average.
Harry might have been onto something. A nurse pulled him aside and told him he was wasting his time there.
I'd been urging him to go someplace else for years. There are other great hospitals. Barnes in St. Louis. The University of Chicago Medical Center. The University of Illinois Hospital has a well-regarded transplant program. I reached out to UIH. They were enthusiastic. Sure, if Harry gets to Chicago, they'll evaluate him.
By then he'd had another setback with his heart. Plus vein problems. He'd lost part of his foot. Travel was out of the question.
We watched his oldest daughter graduate college on Zoom last year; I stayed with him while his wife Yi attended the ceremony — two weeks driving him to dialysis, hanging out, talking. He taught me to play Go.
None of this would have made print — not everything belongs in the newspaper. But on Dec. 16 The New York Times ran a front-page story, "Hospitals Cater to ‘Transplant Tourists’ as U.S. Patients Wait for Organs."
At first glance I thought the story was about Americans going overseas to get organs while patients here languish — Harry and I had joked about buying a black-market kidney in Southeast Asia.
To continue reading, click here.
Poor guy. Good info on how damaging dialysis is. But if you don't get it, you'd go faster. It figures: more breaks from the rich and the hospitals are in on it.
ReplyDeleteWhat we have is shortage of organs available for transplant, creating an opportunity for black market activity. A person should be allowed to sell a kidney. The going rate for the transplant procedure is a cool $440K. A reasonable starting price of 5%, or $22K seems fair. People should be free to negotiate the amount. If you're life or that of a loved one is at stake, are you seriously going to say well the additional cost is a deal breaker? Currently, there are over 90,000 people on the kidney transplant waiting list, and about a dozen people die each day waiting for a kidney. Changes to our archaic laws would go a long way towards reducing these numbers. In particular it would motivate family members of a deceased person to okay organ removal. The proceeds could easily cover funeral expenses. It is also the same situation with bone marrow donation. Currently donors receive a pittance of $250. There are 12,000 people waiting for bone marrow transplants. The risks to a bone marrow donor are generally low. Let them be able to negotiate an agreeable price.
ReplyDeleteSo people with money are favored over those without? Or is someone other than the recipient going to pay?
DeleteWhile you are right, Bernie, I do think the problem goes beyond supply and demand. Our government is supposed to protect us from abuse and support all of it's people equally. Right now the organ transplant list is a great example of how it fails us all. Organ black markets only endanger everyone by exposing us all to unregulated and dangerous things from disease to another potential AIDS blood contamination incident. When people with money can pay to skip lines and receive "better" care we no longer promote quality medicine or strive to better the lives of all, but pick and choose what to do based on money. Why cure cancer or cure colorblindness when organ donations will make you a billionaire? Why try and cure people when you can bleed them of all their money while their on "health insurance?" What good does solving do when you can just string people along for a few more bucks?
DeleteSure, selling our own organs for top dollar would make a difference --although I would argue it would cause more issues -- but should we find a way to get closer to altruism? Fight for equity and equality regardless of your financial worth? Do good just to do good, regardless of who that good is done for...
I don't know, perhaps I'm just too naive and hopeful. People will always take advantage of the system, after all Elon Musk might be the biggest welfare queen in the history of the country, so why not fight for a better world instead of trying to fight a fire with a garden hose? But that's just me. and i'm sure i'm probably wrong.
Glad you linked your other column on dialysis here as well.
ReplyDeleteMy condolences for your loss, Neil.
ReplyDeleteThere will forever be it's defenders, but I don't understand how people can argue that our current form of capitalism is acceptable.
Maybe Billy Joel was right, or maybe it's because they don't live long enough to become jaded and ruin their own lives, but only the good die young.
Stories like Harry's leave a bitter taste in my mouth. As hard as I try to say everyone is equal (or at least should be), the haves seems to willingly cast lighter fluid onto the raging fires of inequality. Sure life isn't fair, so why not take advantage of the rigged system when you can; but I'm constantly reminded of how few of the elite die waiting in the bread line with the rest of us.
How can we continue to be so stupid? They jump the line to save themselves and no one else, yet we are OK bending over backwards to give them our money to build a new stadium for their professional sports team. But sure, Twitter/X is still ok to use. It's ok to keep eating at Chick-a-Filet. The rickets and the cubs aren't the same thing. Amazon isn't as bad as it seems...
The list goes on forever, but we still don't seem to comprehend our own power. We need to demand more of our country and our government. We need to fight for the people like Harry. After all, he decided to run out of a burning building, seems like the rest of us are content to just sit here as the fire consumes us all.
Again, my sincerest condolences, Neil. May his memory be a blessing.
well said, double B
DeleteThank you for this. As I was leaving O’Hare yesterday, I saw a giant billboard outside terminal 2 touting a hospital in Tampa as America’s transplant leader. Are they catering to the uber rich in South and Central America, or just to those here?
ReplyDeleteNS: I forgot what that the Yiddish word is for those who do good deeds. It was some word I've seen used, but I'm not Jewish and don't recall it. But you certainly did many good deeds for this cousin. My condolences.
ReplyDeletePerhaps it was the Hebrew word "mitzvah"..as in performing of ritual "mitzvot"...plural (good deeds, commandments, connections, or religious obligations). And "doing a mitzvah" is a means of "tikkun olam"--- helping to fix, repair, or perfect the world. Mister S made his cousin's final days better ones. That was definitely a mitzvah.
DeleteA person who does a particularly good deed is referred to as a
DeleteShaliach mitzvah .
Referring to the emissary that provides the gift.
My uncle needed a kidney about 20 years ago and I went to get checked to see if I was a match.
Many of us in our family were willing to donate.
He was a wealthy man but moreover well loved
His son was the closest match and donated one of his my uncle lived 12 more years of pretty high quality life.
I don't know that I would donate a kidney to a stranger for any amount of money though a friend did a couple of years ago for no remuneration.
I'm sorry for your loss Neil .
I had a friend teach me how to play Go.
I was there with him when he passed a couple of years ago.
Not my favorite game but one of my favorite people
Thanks, bro. Wikipedia may be my friend, but he's not Jewish.
DeleteAnother non-Jew here, wondering if the word "mensch" would fit for Mr. S. - a person of integrity and honor?
DeleteMensch is a Yiddish word which literally translates to "person" and figuratively means "a person of integrity and honor". Jewish-American humorist Leo Rosten described a mensch as "someone to admire and emulate, someone of noble character. The key to being 'a real mensch' is nothing less than character, rectitude, dignity, a sense of what is right, responsible, decorous."
DeleteIn short, not just a person, but a particularly good person, similar to the American expression "a stand-up guy"...and I think it fits Mister S like a glove.
In my late teens, I dated someone whose last name was Mencher...and naturally, everyone (including me) called her "Mench."
She hated it. Go figure.
I'm sorry for your loss, Neil. At least he had you as a loving and supportive relative through his ordeal. The kinds of shortages that exist in the organ donation world make for the absolute worst kinds of thorny ethical issues and thus the worst policies when in the context of our profit-driven health care system. The NYT's ethics column recently had a piece on the ethics of concierge medicine, which allows those with money to get more frequent and attentive care from doctors. The comments section for that topic was the most heated debate I've ever seen with many doctors chiming in on how, although it's unfair, that is the only option that keeps them from completely burning out and leaving the profession. Wealthcare in America is truly the worst aspect of our nation.
ReplyDeleteDouble B makes good points. Another aspect that hasn't been mentioned by anyone other than Harry is an individual hospital's (or perhaps individual surgeon's) reluctance to offer procedures to patients at higher risk, for fear of hurting their success-rate statistics. I believe Harry's point is a valid one.
ReplyDeleteIt isn't just the hospitals that can reject a donor, Mister S--the dialysis patient can also refuse a kidney. My wife's Cousin Joe has turned down a number of them, usually because of age and health issues. If you're not a "somebody" it's all a roll of the dice. Others are ahead of him in line.
ReplyDeleteThe clock keeps ticking. For Cousin Joe, it's been ticking for years. He's past 70, and he's still holding out for the "right" kidney. And he has become much more religious now. But here's a heads-up, Joe: Jesus isn't going to save you.
A friend who waited years for an organ transplant died instead, at 63. Probably because her name wasn't Mickey Mantle. The rich and the famous always go to the head of the line. Whether it's for entrance into a club or for kidney transplants.
Mantle received a liver in June of '95. His own was ravaged by decades of drinking, and he also had an inoperable liver cancer, necessitating a liver transplant. Some felt that his fame allowed him to receive a donor liver in just one day, bypassing patients who had been waiting much longer. That was said to have smacked of favoritism. Gee, ya think? As in all things, fame and money talk, and the rest of us walk. Or just die.
Six weeks later, the cancer was found to have spread throughout Mantle's body. That was thought to have been caused by the drugs given him for his transplant. Mantle died on August 13, 1995, nine weeks after the procedure. Fame can take you only so far. Money can only buy you so much. But unlike my friend, and unlike Cousin Harry, at least the Mick got one last chance.
While true about Mickey Mantle, years later Chicago's hero, Walter Payton, got diagnosed with cancer at a late stage. It was believed his overall excellent physical fitness masked the cancer symptoms until well into the disease. He put out a call for a liver donation, but while waiting it was discovered the cancer had spread, making him ineligible for a transplant. At least in Walter's case, many years later, guidelines were followed.
DeleteThe rich always get top choice. How many celebrities, like David Crosby, after years or drugs and alcohol, got an organ transplant before others long awaiting?
ReplyDeleteYou can indicate on your Driver's license that you are a donor-do it-the best thing one can do when you die-you can-in a sense-live on in others.
ReplyDelete