The risks of unproven stem cell treatments – Marketplace
This is Uncomfortable April 18, 2024 Transcript
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Reema Khrais: Its a beautiful home.
Doris Tyler: Oh, thank you, we love it.
Reema: Im entering a cozy townhouse in Banner Elk, North Carolina. Its tucked away among beautiful mountains with snow on their peaks. Im here to meet Doris Tyler.
Doris: Would you like some water or coffee or anything?
Reema: Im good, thank you so much
Reema: Her home is cozy. Its December. Theres a Christmas tree, wood burning in the fireplace, and family photos everywhere you look
Doris: Im glad you got to come and see the beautiful mountain country we live in up here.
Reema: I know! Its so beautiful
Reema: Right away I feel the type of person Doris is. Full of energy despite her 80 some years. Incredibly warm. We sit down to talk. Her feet dangle from the couch.
Reema: So how would friends and family describe you?
Doris: One of my granddaughters called me Crazy Granny.
Reema: *laugh* Why is that?
Doris: Uh, Im very lively. I love people, I love to meet new people, um, I love hugs.
Reema: How, how would you describe her?
Don: That she loves life.
Reema: Thats Doriss husband, Don. Hes sitting on a recliner across from her. I notice when Doris talks, she becomes his only focus.
Doris: We met singing in the choir and actually started dating on, um, choir tour to California. And, um, I dont know if I should say this but my, he first kissed me in Bernardino, California.
Reema: Aw! Was there, I dont know, like a song early on that you all really connected over?
Doris: Uh, it was When I Fall in Love by Nat King Cole.
MUSIC: When I fall in love it will be forever
Reema: The song says, when I fall in love, it will be forever
Doris: Don said that to me when he kissed me that day in Bernardino, and so thats why.
Reema: Don was enamored with Doriss energetic personality and how unafraid she was to be herself. Like when shed go to baseball games, shed yell so loud her family would joke they could hear her from home. Their romance moved fast.
Doris: We got back from choir tour on April 1st and April 18th we were engaged.
Reema: Wow!
Doris: And we were married August 11th.
Reema: Yall wasted no time!
Doris: And everyone said it wouldnt last! And here it is 61 years.
Reema: Don and Doris lived a happy life together. Both would go on to teach music: Doris taught elementary school and Don taught college. They didnt make a lot of money, but it was enough. Doris was very active, even after retirement. She loved doing things for herself and for her church. And then one day, everything changed.
Doris was driving to a womens meeting at her church. It was starting to get dark. And then it started to rain.
Doris: And cars started coming towards me, and I couldnt, I couldnt see to judge exactly where I was on the road. And, um, so, uh, the further I got, the slower I was driving, trying to, uh, you know, be careful and not run off the road or not hit somebody.
Reema: Her vision was so blurry she could barely see. The road from her home was a little curvy, but Doris had driven this way so many times, it should have been automatic.
Doris: And the more, the more I went, the more, um, upset I got. And I finally just pulled into a parking lot. And I turned around and crept back home.
Reema: When she came inside, Don was surprised to see the state she was in.
Doris: And I was boohooing, boohooing, and Don thought Id had a wreck, because of the way I was. And I told him, when I got in there, I said, I am never, ever driving again! I just was so afraid that I would hurt or kill someone if I, you know, if I caused a wreck, and I just, I couldnt do that. I just couldnt do that. Id rather give up driving than do that.
Reema: Doris went to her eye doctor and learned that she had macular degeneration, which is a common eye disease among older people. It causes the center of your vision to be blurry.
There was good news and bad news: The good news was that she could treat the condition with injections, and that should stop her vision from getting too much worse. With her social security benefits, those injections would cost 200 dollars a month, which seemed more than worth it. The bad news was that her vision would probably never be the same again.
So Doris started getting those injections each month. The idea of a needle in her eye sounded terrifying at first, but she quickly got used to it.
Life went on like that for a while. Don helped Doris as much as he could. Doris could no longer read the small print in her music or her recipes, so Don would type them up for her in bigger fonts.
Don: I mean, I was always on the computer doing something, you know, so I just typed the words for her or whatever that she needed as far as the recipes, didnt seem like that big a deal.
Reema: And then, suddenly, in 2016, the injections stopped working. The doctor told her, theres this other type of injection you can try. But instead of $200 a month, it would cost $2000 a month. Ten times as much. There was just no way they could afford it.
Don and Doris had just about lost hope, when a friend handed them a booklet. The print was small, and Doris couldnt read it, so Don read it aloud to her. It basically described a new technology: stem cells, that could cure all kinds of ailments. The idea was that you could take cells from a healthy part of the body and inject them into a damaged part of the body, and the healthy cells would help the damaged cells heal and regenerate.
Doris learned she could get stem cell injections in her eyes to restore her vision. The procedure would cost $8000 for both eyes.
Reema: At the time, what was $8000 like for you all?
Doris: Well, I, I just said to Don, We cant do it.
Reema: They were retired school teachers who didnt have even 8000 dollars in their savings account. But then, Doriss children had an idea: they insisted on setting up a GoFundMe for her.
Doris: My boys, my sons, they said, Mom, you need to get this, uh, done. You know, this would help you so much.
Reema: Doris had never heard of GoFundMe. She had never heard of stem cells, either. But she did want her vision back.
Im Reema Khrais and youre listening to This is Uncomfortable, a show about life and how money messes with it.
Youve probably heard stories before of people using crowdfunding for their healthcare when insurance wont cover it. Its hard to know how to feel about these stories. Like, on the one hand, its nice to think about people supporting the ones they love; and on the other hand, it paints a bleak picture of our healthcare system. Many Americans cant afford basic medical care.
Doris and her family didnt just have to go outside the traditional insurance system, but the traditional healthcare system too. Stem cells were this new, cutting edge technology. Like, what if they could help Doris drive again or play the piano without squinting?
When Doriss family set up a GoFundMe for her, she didnt expect much to come of it. She didnt realize how beloved she was in the community, how many people, how many former students would be eager to help her restore her vision. But that was just the beginning of the surprises.
Soon after Doriss family set up the GoFundMe, money started pouring in.
Doris: I think within a week maybe two weeks wasnt it, Don? At least a week that we had it. And I was shocked that we had that much.
Reema: Doris sent Don out to buy thank you cards for everyone who donated. They had enough money for the procedure. Doris was relieved.
At that point, they were confident that stem cell treatments were the way to go. Don had been doing a lot of research online about them. Trained doctors were responsible for developing and administering the procedure. Don and Doris had spoken to the doctors on the phone. They said, this is really safe because the injections are coming from your own body.
Don: We put it in your eye, and so, you know, nothing bads gonna happen. I mean, its just part of you going back into you.
Reema: There was a chance it wouldnt work, but that risk seemed more than worth it to Doris. She and Don had selected the stem cell business that was in the pamphlet they got. Their website talks about how they collect data from all over the world, how they have more than 100 clinics in the US alone, and how theyd carefully designed sterile surgical procedures.
Doris: It would either improve my sight or it would stay the same. Uh, which, when you think youre going blind, that sounds pretty good, you know?
Reema: Doris and Don lived in Florida at the time. The closest affiliated clinic was in another state. So they packed up the car and drove.
Doris: Is it 10 hours?
Reema: Thats a long drive.
Don: Uh, no, more like 6 or 7.
Doris: Its between 8 and 10.
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The risks of unproven stem cell treatments - Marketplace