Why genetic engineering experts are putting a spotlight on Victoria Gray's case Victoria Gray's life has been transformed by her treatment for sickle cell disease with the gene-editing technique called CRISPR. She's in London telling her story at a scientific summit.

Why genetic engineering experts are putting a spotlight on Victoria Gray's case

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A MART├ŹNEZ, HOST:

Some of the world's most celebrated experts on genetic engineering are in London this week to debate the promise and the peril of gene editing. Yesterday, the summit put the spotlight on one person, Victoria Gray. The Mississippi woman was the first person with sickle cell disease to be treated with a gene-editing technique known as CRISPR. NPR health correspondent Rob Stein had exclusive access to chronicle Gray's experience. Here he is with her in London.

ROB STEIN, BYLINE: When I first met Victoria almost four years ago, she was lying in a hospital bed in Nashville, so weak she could barely get out of bed. She'd been tormented by the devastating blood disorder her whole life and had just gone through a grueling procedure to have billions of her own bone marrow cells genetically modified and infused back into her body. When we meet at her hotel in London on Sunday, Victoria looks like a different person.

Hi, Victoria.

VICTORIA GRAY: Hi, Rob.

STEIN: How are you?

GRAY: I'm doing good. How about you?

STEIN: I'm great. That's great. It's so good to see you.

GRAY: It's good to see you, too.

STEIN: She had just arrived in London with her husband, Earl, from her hometown in Mississippi - her first trip outside the U.S. ever. And even though she didn't sleep much on the overnight flight, she can't wait to see the sights.

Are you ready for this, Victoria?

GRAY: Yes, I am.

STEIN: You sure?

GRAY: I'm excited.

STEIN: OK.

GRAY: Yes, I'm sure.

STEIN: Here we go.

Before the treatment, deformed red blood cells would incapacitate her with horrible, unpredictable attacks of pain, sending her rushing to the hospital for pain medication and blood transfusions. She could barely get out of bed many days, struggled to care for her four children, keep a job. Today, at 37, all of her symptoms have disappeared. She works full-time as a Walmart cashier, keeps up with her teenagers, so she thought she could handle exploring the city. We head out to find the British Museum.

GRAY: I would have never been able to walk this long before.

STEIN: How much of a difference is it?

GRAY: It's a huge difference - like night and day.

STEIN: I can't imagine having lived a whole life in one way and then having suddenly be so much better.

GRAY: Yes, especially when you have a disease that they say was incurable. So I'm here now. I feel like I got a second chance.

(SOUNDBITE OF ACCORDION PLAYING)

STEIN: We finally make it to the museum. Victoria is not thrilled by the mummies, but I find her studying a small wooden artifact hanging on the wall.

GRAY: It's nice seeing all the old artifacts, especially the cross.

STEIN: Why especially the crosses?

GRAY: Because religion is something that I hold close to my heart. My faith is what brought me this far. And God did his part - you know? - for what I prayed about for years. And together, hand in hand, God and science worked for me.

STEIN: Next stop is the London Eye - a huge Ferris wheel that towers over the city. Victoria's keen for a ride, even though she's afraid of heights. We've been exploring for hours. We climb on board and circle to the top.

How are you feeling, Victoria?

GRAY: I still feel good.

STEIN: What do you think of this view?

GRAY: Oh, it's a beautiful view.

STEIN: So that looks like Big Ben right there. You see it?

GRAY: Yes.

STEIN: Did you ever think you'd be able to get a view like this?

GRAY: No, I didn't. Part of my dream's coming true.

STEIN: As we circle back down, I ask Victoria how she's feeling about addressing the international gene editing summit the next day.

GRAY: So I'm very excited - a little nervous, honestly, speaking in front of a large crowd.

STEIN: So what do you think will be more nerve-wracking - doing the London Eye or speaking at that summit?

GRAY: Speaking at the summit, of course.

UNIDENTIFIED ANNOUNCER: OK. Our flight is almost over, so please make sure you take everything with you when you leave.

(CROSSTALK)

STEIN: The next morning, Victoria makes her way through the crowd at the summit and finds a seat in the auditorium as Robin Lovell-Badge opens the three-day meeting at the Francis Crick Institute.

(SOUNDBITE OF ARCHIVED RECORDING)

ROBIN LOVELL-BADGE: Hello, everyone. I'm very pleased to see so many people here. So welcome to the third Summit on Human Genome Editing.

STEIN: Speaker after speaker described the latest scientific advances in gene editing. David Liu from Harvard sounded a bit echoey because he addressed the summit remotely.

(SOUNDBITE OF ARCHIVED RECORDING)

DAVID LIU: There are more than 200 patients to date, including Victoria, Patrick and Carlene, pictured here, that have been treated in clinical trials with CRISPR nucleases targeting DNA sequences that, when disrupted, offer clinical benefit. You'll hear more from Victoria about her experience directly later today.

STEIN: Finally, it's Victoria's turn on the podium.

(SOUNDBITE OF ARCHIVED RECORDING)

GRAY: Good evening. I'm Victoria Gray, and I'm a 37-year-old mother of four and a sickle cell survivor. Take a moment to go on a journey with me.

STEIN: For 10 minutes, Victoria repeatedly chokes back tears as she describes her life with sickle cell, including one especially torturous pain crisis...

(SOUNDBITE OF ARCHIVED RECORDING)

GRAY: During this hospital stay, with a ketamine infusion in one arm and a Dilaudid infusion in the next, but still no pain relief, I called all the doctors into the room, and I told them that I could no longer live like this. I went home, and I continued to pray and look to God for answers.

STEIN: ...And how she finally received the CRISPR gene-edited cells - super cells, she calls them - as part of a study.

(SOUNDBITE OF ARCHIVED RECORDING)

GRAY: The life that I once felt like I was only existing in I am now thriving in. I stand here before you today as proof that miracles still happen and that God and science can coexist. Thank you for allowing me to share my story with you.

(APPLAUSE)

STEIN: As Victoria walks off the stage, the audience of scientists, doctors, bioethicists and others gives her a standing ovation. Vertex Pharmaceuticals and CRISPR Therapeutics, which sponsored the study Victoria volunteered for, are asking the Food and Drug Administration to approve the treatment. That would make it the first gene-editing therapy to become widely available.

But for the rest of the afternoon, speakers warned that there are still big questions about all this. How many patients will it help? How long will it last? The treatment is complicated and is expected to be really expensive - possibly costing millions of dollars. Will it be available to the patients who need it most, especially in less affluent countries, where sickle cell is most common?

Rob Stein, NPR News, London.

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