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The promise of a miracle cure
Apr 18, 2024
Season 9

The promise of a miracle cure

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Doris Tyler was losing her sight, so she tried a new stem cell treatment that changed her life — but not as she had hoped.

Doris Tyler has been full of energy her whole life. When she was young, she yelled so loud in the stands at baseball games that her family joked they could hear her all the way from home. Later, she became a music teacher at an elementary school, where students adored her. Even after she retired, Doris was always busy with something, whether it was helping out her church or devising creative desserts for her grandchildren.

But then she started to lose her sight, and with it, her sense of self and love of life. She couldn’t drive anymore, and she struggled to read the fine print on her beloved sheet music. Even cooking became a struggle without her husband Don’s help. 

Doris’ blurry vision was diagnosed as macular degeneration, and it was only getting worse. She tried the treatment her doctor recommended to stabilize the condition, but after a while that stopped working too. 

And that’s when she and Don heard about a hopeful new field of medicine: stem cells, which promised to heal a variety of conditions by using the body’s own cells. The stem cell treatment for macular degeneration was expensive — $8,000, more than Doris and Don had in their savings account — but their community rallied around them to help pay for it. Doris was thrilled to have found a potential cure.

“It would either improve my sight or it would stay the same,” Doris said she was told, “which when you think you’re going blind, that sounds pretty good, you know?” 

The treatment ended up changing Doris’ life, but not in the way she’d anticipated. Instead of relief, it brought more heartache. 

This week, we talk with biologist Paul Knoepfler about the largely unregulated stem cell industry and share Doris’ story of betrayal, retribution and unconditional love. 

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This is Uncomfortable April 18, 2024 Transcript

Note: Marketplace podcasts are meant to be heard, with emphasis, tone and audio elements a transcript can’t capture. Transcripts are generated using a combination of automated software and human transcribers, and may contain errors. Please check the corresponding audio before quoting it.

 

Reema Khrais: It’s a beautiful home. 

Doris Tyler: Oh, thank you, we love it.

 

Reema: I’m entering a cozy townhouse in Banner Elk, North Carolina. It’s tucked away among beautiful mountains with snow on their peaks. I’m here to meet Doris Tyler. 

 

Doris: Would you like some water or coffee or anything? 

Reema: I’m good, thank you so much…

 

Reema: Her home is cozy. It’s December. There’s a Christmas tree, wood burning in the fireplace, and family photos everywhere you look…

 

Doris: I’m glad you got to come and see the beautiful mountain country we live in up here.

Reema: I know! It’s 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, I’m very lively. I love people, I love to meet new people, um, I love hugs. <LAUGHTER>

Reema: How, how would you describe her? 

Don: That she loves life.

 

Reema: That’s Doris’s husband, Don. He’s 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 don’t know if I should say this but my, he first kissed me in Bernardino, California. 

Reema: Aw! Was there, I don’t 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 that’s why.

 

Reema: Don was enamored with Doris’s energetic personality and how unafraid she was to be herself. Like when she’d go to baseball games, she’d 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: Y’all wasted no time! 

Doris: And everyone said it wouldn’t 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 didn’t 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 women’s 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 couldn’t, I couldn’t 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 I’d 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 couldn’t do that. I just couldn’t do that. I’d 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, didn’t seem like that big a deal. 

 

Reema: And then, suddenly, in 2016, the injections stopped working. The doctor told her, there’s 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 couldn’t 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 can’t do it.” 

 

Reema: They were retired school teachers who didn’t have even 8000 dollars in their savings account. But then, Doris’s 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. 

I’m Reema Khrais and you’re listening to This is Uncomfortable, a show about life and how money messes with it. 

You’ve probably heard stories before of people using crowdfunding for their healthcare when insurance won’t cover it. It’s hard to know how to feel about these stories. Like, on the one hand, it’s 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 can’t afford basic medical care.  

Doris and her family didn’t 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 Doris’s family set up a GoFundMe for her, she didn’t expect much to come of it. She didn’t 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 Doris’s family set up the GoFundMe, money started pouring in. 

 

Doris: I think within a week – maybe two weeks wasn’t 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 bad’s gonna happen. I mean, it’s just part of you going back into you.

 

Reema: There was a chance it wouldn’t 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 they’d carefully designed sterile surgical procedures. 

 

Doris: It would either improve my sight or it would stay the same. Uh, which, when you think you’re 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: That’s a long drive. 

Don: Uh, no, more like 6 or 7.

Doris: It’s between 8 and 10.

Don: Okay.

 

Reema: Doris wasn’t worried about the procedure being painful. She’d had needles stuck into her eye so many times at that point. She was just excited at the possibility of getting her vision back. One thing did strike her as odd: the day before the procedure, they told her that the treatment was part of a clinical trial. Doris couldn’t recall anyone mentioning this before. 

They arrived at the clinic very early in the morning. First, the doctors liposuctioned fat cells from Doris’ abdomen.

 

Doris: It just feel like a slurp, slurp, slurp, slurp *laugh*

 

Reema: Then they put the cells in a centrifuge and spun them to separate out the stem cells. 

 

Doris: And then they, the ophthalmologist took the stem cells and put them in a, in a syringe syringe and injected them in my eyes.

 

Reema: Doris was awake for the whole procedure. It took almost no time at all. 

The next morning, the doctor checked on Doris and said everything looked great, she should be able to see clearly in about three months, in December. Doris kept calling it her Christmas miracle. They drove home to Florida. 

 

Doris: Well, oh, about a week, what’s it, Don? About a week? Um, I, Don gets up before I do, and I got up and I walked in the living room and I said, “Don, is, is my eye closed?” And he said,  “No.” I said, “Well, it’s, everything’s black. I can’t see anything.”

 

Reema: Doris’s left eye was completely open, but she couldn’t see out of it. She felt scared. She rushed over to see her ophthalmologist. He told her that her retina had detached. (Your retinas need to be attached to be able to see.) But he told her, it’s not a huge deal. He could perform surgery to reattach it. No one had told Doris that might happen, but she was relieved there was a solution to what felt like a hiccup. After the doctor reattached her retina, Doris had to lie facedown for ten days so she wouldn’t disturb the healing. It was awful. 

And Doris had barely recovered  when once again, she couldn’t see out of her left eye. She went back to her doctor, who told her she should call the ophthalmologist who did her procedure


Doris: So we called him, he said, “Come immediately.” So we pack up, get in the car…

 

Reema: The doctor told her yep, your left retina detached again. 

 

Doris: I was upset, I was crying, I was mad, wondering what the heck was going on? Why, why, why is this happening? 

 

Reema: Doris got the same procedure to reattach her retina 

 

Doris: Ten more days of facedown. 

 

Reema: She had to ride all the way back to Florida, facedown in the car.

 

Doris: That was a trick. 

Reema: Oh god.

Doris: We tried different ways: we put me in the back seat laying down, we tried… It was terrible! It was the worst trip ever in the whole wide world.

 

Reema: Doris barely got to recover before her retina detached, again. She went through the whole ordeal over and over. 

She cried a lot during this time, realizing she’d likely forever be blind in one eye. She was at least grateful to be able to see out of her right eye. It’d still be blurry because of the macular degeneration, but it was better than nothing. And then the worst case scenario happened. 

 

Doris: Within another few weeks, I couldn’t see out of my right eye.

 

Reema: Her retina in her other eye detached too. She got surgery, and then it detached again. 

 

Reema: In total, how many surgeries did you have?

Don: In total, six or seven, I think.

Doris: I think it was seven.

 

Reema: The stem cell company offered to pay for their hotel as they went back and forth. They even paid for nice meals for them. 

Finally, her ophthalmologist said: 

 

Doris: “I will do another one if you, if you want me to, but,” he said, “Doris, it ain’t gonna work.” So I said, okay I give up. 

 

Reema: After all those procedures, all that money, Doris’s vision was completely gone.

 

Reema: And at that point, had you been coming to terms with…

Doris: With being blind for the rest of my life? Well…

Don: It really hit her as we started back home that day…

Doris: Yeah, we uh, Don took me, we got outside and I was getting in the car, and I just yelled, “God, why have you forsaken me?” And I thought I had a strong faith until then. But, um, anyway, um, I just, uh, said that’s it. And then that’s, there was nothing else that could be done. I was going… That’s when my pity party started.

 

Reema: Doris would never get her independence back. She’d hoped the stem cell injections would help her recover the life she’d had. Now she’d lost so much more. 

After the break, we look at how this happened and what Doris did about it

 

— BREAK —

 

Reema: I was so shocked that something like this could happen, that the stem cell injections meant to cure Doris’s vision made her go blind. We have so much regulation in this country. Did Doris just have terrible luck? Or was something else going on?  

When Doris first heard about the procedure back in 2016, she didn’t know much about stem cells. But even back then, it was getting a lot of buzz…and it still is. From news reports:

 

NEWS REPORTER: Professional athletes have been using stem cell therapies to treat sports injuries for years.  

 

Reema: To local tv ads:

 

TV AD: Stem cell treatment is proven to be safe and effective with positive outcomes. 

 

Reema: And people like Joe Rogan have been spreading the stem cell gospel: 

 

Rogan: You know, you don’t have to do a knee replacement. You know, stem cells. 

Guest: Stem cells…which is something I may do. 

Rogan: Anytime I get injured, man, I just [BLEEP] head on down. I’m like, what’s the purpose of having money if I’m not [BLEEP] shooting myself up with all these juicy stem cells?

 

Reema: As convincing as that sounds, we reached out to an expert who could give us a good sense of this industry, so we could better understand what happened to Doris.  

 

Paul Knoepfler: My name is Paul Knoepfler. I am a professor in cell biology and human anatomy at UC Davis School of Medicine. I am a stem cell and cancer researcher, but I also do educational outreach.

 

Reema: Paul runs a blog called The Niche, which closely tracks stem cell treatments being sold throughout the country and the things that go wrong with those treatments. 

 

Paul: I would say, you know, 95 plus percent of people who are getting stem cell therapies in the U.S. are getting something that is not proven to either work or be safe.

Reema: How? How do these companies get away with selling unproven

treatments? 

Paul: That’s a great question. It’s, it’s, unfortunately, it’s a little bit… It’s interesting, but complicated.

 

Reema: Paul says over the last decade or so, we’ve seen a lot of legitimate, promising stem cell research. Most of that research is still ongoing, but that hasn’t stopped it from generating a bunch of excitement.

 

Paul: And business people just kind of, some of them jumped on that. 

 

Reema: They saw dollar signs. All around the country, these rogue clinics began popping up, like the one Doris went to. 

 

Paul: They basically just get a website, open up a storefront and like a strip mall. They haven’t done any testing in a lab. They’re not working with the FDA and getting feedback from the FDA. And so they’re kind of flying blind in a way, like  they don’t really know what they’re doing in a lot of cases 

 

Reema: Currently there are about 2500 clinics in the US selling unproven stem cells treatments for conditions from arthritis and autism to dementia and diabetes. 

 

Paul:  It’s just become this enormous industry, and it’s proven a lot of challenges for regulators who don’t really know how to deal with something that’s such a big scope. 

 

Reema: The FDA has tried to crack down on this problem, but new businesses keep cropping up. These clinics argue that the treatments they’re selling aren’t technically “drugs” because they come from people’s bodies. And so they shouldn’t be regulated by the FDA, the Food and Drug Administration. The FDA disagrees. 

Paul says a lot of patients automatically assume that if trained doctors are administering a treatment, it must be legitimate, and there are all these glowing client testimonials! But he says most of those treatments aren’t FDA approved, or proven to work at all. 

 

Reema: Well, can you give me a sense of what the testing looks like for an FDA approved treatment versus the type of treatment that Doris got? 

Paul: A typical pathway to an actually FDA-approved therapy, where you follow the rules, you’re being a good citizen, it involves testing your cells in a lab, like in a petri dish. Testing those cells maybe next in a rodent, and then you may or may not go into a larger animal to do some testing. 

 

Reema: And only then will researchers start doing initial safety tests on humans.

Paul says it’s hard to say if unproven treatments ever work. Some patients report a temporary benefit, but we don’t know if that’s just a placebo effect. In worst cases, they’ll experience serious health consequences, including things like infections, blood clots, tumors and even organ failure that in some cases have resulted in death.

I explained to Paul what happened to Doris and how she went blind after her procedure. I was curious what he made of it. 

 

Paul: Yeah, unfortunately, it’s not a unique case. We know of other patients who’ve had similar experiences. In this case, and in the similar cases, what was injected into the eye were adipose cells.

 

Reema: Adipose cells are cells from fat tissue. 

 

Paul: And so to me, as I’m a stem cell biologist, to me it doesn’t make a lot of sense that adipose cells, you know, what would they be doing that’s a good thing inside of the eye? Like these fat cells can turn into sort of like scar tissue that kind of contracts inside the eye and damages the retina. Those kinds of things might have been seen in animal studies if, if people had done that first, and then it never would have been tried in people.

 

Reema: And then there’s the fact that Doris was told that her treatment was part of a study just a day before the procedure. This would never, ever happen during a rigorous, FDA-approved clinical trial. 

 

Paul: Um, the other issue this raises is whether or not these are actually experiments. These are not what we think of as traditional clinical trials, where you have like placebo controls and randomization of the participants.

 

Reema: He says in an FDA approved clinical trial, it’s unlikely participants would have to pay for treatments. In some cases, they’re the ones who get paid. 

And the thing is, Paul gets why people are excited about stem cells. He’s excited about them too. There’s so much potential… if we continue to thoroughly research them. At the moment, there’s promising research on stem cell treatments for a variety of conditions, including Alzheimer’s and lupus. Paul says as long as these clinics keep selling unapproved treatments to vulnerable patients, it undermines the credibility of stem cell research that could save lives. And in the process, people like Doris become collateral damage. 

 

Doris: Well, we came home. We, uh, I think Don probably talked to all of the boys and told them, um, you know, what was happening and… Uh, cause I couldn’t talk.

 

Reema: It didn’t sink in at first, the realization that she would be blind for the rest of her life. Doris told us that on the drive back home from the doctor, they pulled over at a rest stop. Don led her into the family restroom. She felt for the wall, slid down and sat on the floor as she cried. Don let her cry as long as she needed, and then he helped her get up to wash her face.

She broke down in tears a lot those first few weeks. She couldn’t imagine how they were going to get through the rest of their lives. It’s been eight years now.

 

Reema: What has been, um, the hardest part of being blind? 

Doris: For me? Well, no, that was a dumb question. “For me?” <<LAUGHS>> Nobody else in this room is blind. Good Lord, Doris! Well, the hardest part is – and I’ll probably start crying and I’m sorry, but – is that I can’t see my children and grandchildren. That has been the hardest part from day one, and Don will tell you that. My youngest grandson, who is now seven, I have not seen since he was nine months old. I have no idea what he looks like. And people say, “Well, feel of him.” Well, shoot, I can’t. That doesn’t do me any good. And, um, so I think that’s been the hardest part for me is not being able to see my family. 

 

Reema: After they came home from that final doctor’s appointment, Doris mourned. And Don prepared to take on a completely different role in their marriage. 

 

Doris: Don, um, like he said, he was here for the long, long haul. And so he’d do the best he could and bless his heart. Don had never cooked. I had spoiled him for fifty something years. He had never cooked, cleaned anything.

Don: When I was growing up, you know, I never had to wash, I never had to iron, I never did any of that kind of stuff. I think right first, when she went blind, she, even for a second, really wondered if I would step up, you know. Or I would, huh?

Doris: No, I never did. 

Don: huh? 

Doris: I never did wonder that. 

Don: You never did? 

Doris: No. 

Don: Okay.

Doris: No. I knew, I knew you loved me and you’d take care of me. 

Don: Okay. 

 

Reema: Don started to teach himself to cook and clean. It was a little rocky at first. 

 

Doris: He had to ask a lot of questions about, what the, you know, if he was reading the recipe, like, “Well, what does this mean?” Like, “cream sugar and butter,” you know, when you’re baking? 

Reema: Right.

Doris: “What in the world is ‘cream sugar’?” You know? So I had to tell him what “cream sugar and butter” meant, you know, how you mix butter and sugar together. And things like that.

 

Reema: As Don and Doris tried to make peace with this new reality, their children were like:

“No, there’s more we can do!” They told their mom, “You deserve justice, you should sue!” 

 

Doris: Well, again, here come my sons, our sons: “Mom, you need to do this. You need to do this so word will get out about what has happened, so people will learn the dangers of the stem cell treatment on your eyes.” 

Don: At first her reaction was, “No I don’t want to do it.” I mean she was pretty adamant about it.

Doris: I guess it was the way I was raised. I don’t know, but I, I thought, well, I, I don’t want to hurt anybody. I don’t want people saying, “Oh, she’s suing, so she’ll get all this money,” and all that kind of stuff. So I said, “No, I don’t want to sue.” 

 

Reema: But the more she thought about it the more she realized it would be a way to do something… something other than throwing one of her so-called “pity parties.” After a couple of weeks of back and forth, Doris was convinced. They hired a lawyer and filed a lawsuit. 

The lawyer got to work investigating Doris’s case. And what he found more than convinced Doris that suing had been the right decision. For example, the doctor who supervised Doris’ stem cell injections had claimed that she was board certified in regenerative medicine. 

 

Doris: After much investigation, he found out that was not true. She was not.

 

Reema: In fact, many of the credentials listed on the group’s website were inaccurate. The two doctors who started the company claimed they had special training in stem cells. They didn’t.  

 

Reema: So you realize, like, the whole practice was pretty shady? 

Doris: Yes. Our lawyer says they’re “snake oil salesmen.” And the worst and the thing that made me the maddest…

Reema: Mm hmm?

Doris: Three months before my treatment, their ophthalmologist, their head ophthalmologist in California…

Reema: Yeah. 

Doris: …texted them and told them, “Do not do any more eye treatments. We’re having too many problems.”

Reema: Wow.

Doris: They did not pass that message on to their doctors!  All they had to do was push send or, you know, pick up the phone and call and say: “Don’t do any more stem cell things.” If they had stopped the stem cell treatments, I would not have had my treatment in September and would not be blind.

 

Reema: Doris says it would be impolite to repeat what she said when she got this news. But she was angry. She wanted justice.

By the way, some of the documents from Doris’s case are confidential, so while we couldn’t see all of the evidence ourselves, we confirmed these allegations with her lawyer. 

Her lawyer worked on the case for three years when finally, the stem cell business offered what seemed like a good enough settlement. 

 

Doris: We could have gone to court and possibly have gotten a bigger settlement,  but the courts were so backed up it could possibly take– how many more years, Don? 

Don: Two to three more years. 

Doris: Yeah, two or three more years, before we’d even go to court. 

Reema: Jeez.

Dorsi: And I, and I and we said, I said, I just, I can’t go with that. I can’t do that, for that much longer. I’ve had it. And so we just settled. 

Don: My attitude in a way was, what’s what’s your eyesight worth, okay? There’s no amount of money. None.

 

Reema: Any amount of money would be inadequate, so at a certain point they just decided to settle out of court. There’s a confidentiality provision in the settlement that means they can’t tell us the exact amount they got. We also reached out to the stem cell business for comment, but they didn’t respond to our requests. They still have clinics up and running throughout the country though. And according to stem cell expert Paul Knoepfler, that’s pretty typical.

 

Paul: Even the clinics who’ve been successfully sued, they’ll pay a settlement, or their insurer will pay part of it, and they just kind of keep going, you know. 

Reema: So it sounds like there aren’t any serious consequences?

Paul: Most of them are just kind of, skating along, you know, and, and…

Reema: They get away with it.

Paul: Right, they get away with it because there’s just so many of them that nobody has the bandwidth, as the FDA has said, to really tackle all of them. 

 

Reema: The FDA’s attempts to regulate stem cell treatments more broadly have led to some mixed results. Liike, in 2018, the FDA actually brought a lawsuit against the group that provided Doris’s care. 

 

Paul: And this is sort of over the argument of whether or not these fat cells are a drug, uh, and the FDA can regulate them as a drug, or are they not a drug, and so we’re sort of in limbo right now, in terms of whether or not the FDA can regulate those cells as a drug.

 

Reema: The FDA lost the case, but then appealed. The case is still in progress. 

As things stand, it seems like these clinics will be able to continue selling unproven treatments with few obstacles. And we can’t really get a good sense of the potential damage they’re causing. Paul says they don’t generally collect or publish data on the treatments. And many court settlements include a confidentiality provision forbidding the plaintiffs from talking about the case. So there could be other settlements like the one Doris got; we just don’t know about all of them. And so, it’s up to patients like Doris and the communities who love them to get the word out about stem cells. 

Doris feels terrible that her former students donated their money to a procedure that turned out to make things worse. 

 

Doris:  I wrote every one of them again, and told them, you know, thanked them again, and, um, was sorry that it didn’t work out.

 

Reema: They even offered to give the money back to some of them. 

 

Don: We mentioned it a little bit, but almost everyone we mentioned it to… 

Doris: Said, “No way.”

Don: “No way.”

 

Reema: While Doris and Don can’t say how much they got in the settlement, they did tell us it was enough money to make life easier. They got the house that I’m visiting now. A house in the mountains with a porch facing the woods, where it’s cool even in the summer. This house has always been a dream for Don. And Doris doesn’t worry if she wants to do something for herself. 

 

Doris: And the other good thing is I get to go get pedicures. <LAUGHTER> Cause I can’t see to do my toenails! 

Reema: It’s like a small luxury. It’s nice. But you can afford to treat yourself. 

Doris: Yes, I can. Whereas before, you know, like I said we weren’t poor, but we weren’t rich. Um, I’d hesitate to go get one, just because I thought, that’s crazy to spend the money to do that. But man, I love them. <LAUGHTER> I love my pedicures!

 

Reema: And while Doris still cries when she thinks about how she’ll never know what her grandchildren look like, she’s able to connect with them through her blindness in other ways. 

 

Doris: I have one granddaughter that when she comes in to hug me, she says, “Incoming!” <LAUGHTER> So, because she knows I can’t see.

 

Reema: And she remembers watching a parade at Disney World with one of her other granddaughters. 

 

Doris:  And all of a sudden the music started for the parade, and here came Braelyn, and jumped up in my lap and sat down, and she told me everything that happened in that parade. She explained what the girls, the princesses, were wearing, and who was on the float, and blah blah blah. And that was so special. 

Reema: It seems like, it’s been years now and you’ve made peace with your blindness, I guess is that fair to say? 

Doris: Yeah. 

Reema: Yeah, how, how have you done that?

Doris: I think it was several things. One is that my outlook on life, all, from always, I’ve been a very positive person.

Reema: Yeah

Doris: Always. And I think that that has been, uh, a wonderful help. My faith in God… 

Don: Even though she questioned God! <LAUGHTER> 

Doris: I questioned him at first, but I know he’s, he’s right here helping me. Another thing is, I – and I don’t want to sound like I’m bragging – but I want to be an inspiration for others  to let them know you can do it. It may be a terrible thing that’s happened to you, but you, you know, you can, you can, you can survive, and you can enjoy life. Um, so I want to be an inspiration, and so I think that helps me. 

 

Reema: And she’s gotten better about asking Don for help when she needs it. She remembers him bringing her something as simple as a glass of water. 

 

Doris: I said, “Thank you,” and he, you said something like, uh, “No bother, I, I,  I, I’m glad to do it,” or something like that. So I know he doesn’t mind doing it.

Don: Nope, you know, I think now, this is my purpose in life.  

 

Reema: And with Don’s help, Doris still has her music.

 

Doris: I don’t… What is wrong?

<Doris plays piano riff>

Doris: I’m sitting in the wrong place or something. Something’s wrong, something’s wrong. 

Don: What are you trying to find, middle C? Right there. There.

<Piano starts, Doris sings “Amazing Grace”>

Doris: Amazing grace, how sweet the sound, that saved a wretch like me. I once was lost, but now am found. Was blind but now I see.

 

Reema: Alright, that is all for this week’s episode and for this season. We’ll be back with a whole new season of This Is Uncomfortable in a few months. And I should mention, it’ll be our 10th Season! So expect a few special surprises… And between now and then, we’ll be dropping in your feeds periodically to share some updates and other things you’ll enjoy. 

In the meantime, if you want to reach out to us, to share an episode idea or even share your own personal story, or whatever is on your mind, please do not hesitate to reach out. You can always email me and the team at uncomfortable@marketplace.org

And even though the podcast is taking a break, our newsletter isn’t! So if you’re not already subscribed, you can fix that by going over to Marketplace.org/comfort 

You’ll want to check it out cause we’re working on something pretty special…. and that is our very first This Is Uncomfortable Summer Book Club. We’re gonna share a highly curated selection of books with themes around money, class, our relationship to work… you know, the kinds of things you hear us talk about on the show. And we’ll have fiction, non-fiction, new stuff, classics. Every other week, we’ll cover a new book and interview the author or an expert.

First up, we’re excited to talk to award-winning author Naomi Alderman about her latest novel, “The Future.” It’s a book about tech billionaires who think they can buy their way out of an apocalypse– and the regular people who get in their way. It’s super interesting, and we’re psyched to talk to Alderman about her book. We hope you’ll join us at Marketplace.org/comfort  

And finally if you liked this episode, if you like our show, please share it with your friends, leave a review, rate us on whatever app you’re using. That stuff really does help us out.

Hannah Harris Green: Alright, this episode was lead-produced by me, Hannah Harris Green, and hosted by Reema Khrais. We wrote the script together. The episode got additional support from our intern Marika Proctor and producer Alice Wilder, who helped record our interview with Doris and Don. Zoë Saunders is our senior producer. Our editor is Jasmine Romero. Sound design and audio engineering by Drew Jostad. Bridget Bodnar is Marketplace’s Director of Podcasts. Francesca Levy is the Executive Director of Digital. Neal Scarbrough is Vice President and General Manager of Marketplace. And our theme music is by Wonderly.

Reema: Alright, we’ll catch y’all soon. 

Doris: Thank the good lord, Don has good taste in clothes.  Most of my friends say, “Your husband picks out your clothes?” And I go, “Yeah, he does.” “Oh, my husband could never do that!” You know.  

 

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