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This transcript was created using speech recognition software. While it has been reviewed by human transcribers, it may contain errors. Please review the episode audio before quoting from this transcript and email transcripts@nytimes.com with any

questions. name is Daniela Lamas, and I’m a pulmonary and critical care doctor at Brigham and Women’s Hospital in Boston.

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I often find myself drawn to stories that explore the nuance between surviving an illness and actually recovering, because there’s a lot of middle states that are created by medical interventions of people who have been through something catastrophic and lived, but aren’t yet OK. And so I’m really interested in the cost of that middle ground, not just the financial cost, but the emotional and psychological cost of survival.

Most recently, I’ve been looking into sickle cell disease and gene therapy as a cure for this disease. The FDA is actually expected to decide whether to approve a new gene therapy for sickle cell this week. Now, sickle cell itself is a disease where, over many years, in many ways, the medical establishment, I think, has really let down those who suffer from it. And this is our opportunity with this FDA approval and what comes after. This is our opportunity to do something different. This is our opportunity, I think, to do it right.

Yeah, I can hear you.

Yep, it’s rolling now.

In the course of my reporting, I was fortunate to meet many patients, these people who had undergone gene therapy trials. And the person that I really focused on ultimately is this fantastic, interesting, dynamic man named Lynndrick Holmes.

I’m from Mobile, Alabama, but now I live in Lockhart, Texas. I’m a father, I’m a poet, I’m a survivor, a fighter.

How would you describe back in Mobile, how would you describe your access to quality medical care?

It was accessible up until I transitioned from pediatric care to adult. When I got into adult care, it was like, welcome to the real world, brother. Do you know what your disease is? I don’t. Not my business. I’m not a sickle cell hematologist. Deal with it. Pain medicine. Are you an addict? And so it was just a whole new world, an awful world.

So sickle cell is a genetic disease that causes red blood cells to sickle, to change their shape. And so they clog blood vessels and block blood flow, and as a result, cause both excruciating pain and organ damage, and ultimately, an early death. Sickle cell affects about 100,000 people in the US, and they are predominantly Black. Patients often face a good degree of racism in getting treatment. And that is all along the line from access to care to access to people who actually know about sickle cell disease.

I come from a very black and white type of state. They judge you based on the kind of person they think you are, and that affects every aspect of your life. It affects how the teachers treat you. That affects how law enforcement treats you. That affects, of course, how doctors treat you.

So when it came to treatment, that was literally a life or death situation to me, because if I’m perceived to be a certain way, then they’re just going to whisk me away or just deal with me, like, get him his pain medicine so he can get out of my emergency room, instead of actually giving me the treatment that I deserve. So racism played a major part in not just trying to survive with sickle cell, but just trying to survive, period.

Lynndrick had sickle cell crises throughout his childhood. I mean, he talks about having spent first grade largely in the hospital, sort of watching children play through a window. And by the time that he was in his 20s and had lost possibility after possibility, he began to get fed up.

I was suicidal. I was pretty much done with the whole rigmarole of building a life, then losing that life. You get a job, you have a source of income, you get a place to live, and then you have a social life and all these kind of things.

And every time I would have a major sickle cell crisis and I’m out of work for an X amount of weeks, I lose my job, which means I can’t keep up with my cell phone bill, and I can’t keep up with my car note. I can’t keep up with my rent. I can’t keep up with none of this. And it was because I kept getting sick. So I kept going through that cycle, and I was just tired, especially if I was going to die anyway.

Lynndrick was desperate, and he had a memory of being a child and going to sickle cell clinic, and he has a memory of a nurse saying something about STEM cells and about their ability to, perhaps, one day treat this disease.

And so that memory provoked me to go to the library and google to try to see where they were because I figured, like, a lot of years have passed since then. They must have gotten further than they were when I was a kid.

Google actually took him to an NIH website, and he hadn’t actually heard of the NIH, the National Institutes of Health. But the NIH website ends.gov, and so he figured that this must be a legitimate website. And it took him to ongoing NIH trials of gene therapy and STEM cell transplant for sickle cell disease.

I was just reaching out for just general information. I was just like, please, just, I need to know what do I need to do to be a part of this.

And when you heard back from the people that you sent a message to at the NIH, kind of, how did you feel about the possibility of gene therapy when you first heard about it?

I first, I was skeptical because it........

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