Sickle Cell Patients Endure Discrimination, Poor Care And Shortened Lives

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SCOTT SIMON, HOST:

Nearly a third of African-Americans report experiencing discrimination when they've been to the doctor. It's according to a poll from NPR, the Robert Wood Johnson Foundation and the Harvard T.H. Chan School of Public Health. Perhaps nowhere is that discrimination felt more profoundly than in sickle cell disease, a disorder that primarily hits African-Americans. Care is so problematic that patients are dying younger now than they did 20 years ago. Here's Jenny Gold with the first two stories for our series You, Me and Them: Experiencing Discrimination in America.

JENNY GOLD, BYLINE: For more than a year, NeDina Brocks avoided one room in her large, brightly colored San Francisco house, the bathroom on the second floor.

NEDINA BROCKS: It was really hard to bathe in here, and I found myself not wanting to touch the walls.

GOLD: The bathroom is where Brocks' son Kareem Jones died in 2013. He was 36 years old and had sickle cell disease. That means his red blood cells bent into a crescent shape, clogging his vessels and preventing blood from circulating oxygen to his organs. Patients with the disease suffer from problems including stroke, kidney disease and chronic pain. Sickle cell is a genetic disorder, and Brock says she felt responsible.

BROCKS: I got the trait. His dad has the trait. You know, so I was just like, wow, I did this to this kid. That's how it felt.

GOLD: Brock says, as a child, Kareem received excellent medical care. But once he turned 18, there was little help. He was sent to a clinic at San Francisco General.

BROCKS: But it's only a half a day one day a week. If he was sick any other days, it was just emergency.

GOLD: With limited clinic hours, Kareem's options were to leave a voicemail for a nurse or go to the emergency room.

BROCKS: That's not comprehensive care. That's not consistent care for a disease of this type.

GOLD: Brocks is a retired supervisor at a workers' comp firm. She understood the health care system, but she couldn't get her son what he needed. Often, he ended up at the hospital in extreme pain, where Brock says the doctors didn't seem to know much about sickle cell disease.

BROCKS: And then when we get into emergency and I'm trying to tell them, hey, he needs - OK, have a seat. He can't have a seat. Can't you see him?

GOLD: Studies have found that sickle cell patients have to wait up to 50 percent longer for help in the emergency department than other patients. Despite his illness, Kareem fought to have a normal life. He lived with his girlfriend, had a daughter and worked whenever he could. He was an avid Giants fan. For years, the one thing that helped him was a drug called hydroxyurea. But it had side effects. And after a while, Kareem had to stop taking it.

BROCKS: And that was it because, you know, there isn't any other medications out there.

GOLD: Indeed, until this year, the FDA had not approved another sickle cell drug for nearly two decades. Funding for the disease pales in comparison to other disorders. Take cystic fibrosis. It affects far fewer people than sickle cell - most of them white - but it gets seven to 11 times more funding per patient according to a study in the journal Blood. Dr. Elliott Vichinski is a leading sickle cell researcher.

ELLIOTT VICHINSKY: Race is, without question, a major factor. In large part, people of color have been discriminated against and have less power. There's less lobby and funding that goes into this.

GOLD: For Kareem's mom, Brocks, that's exactly what it felt like.

BROCKS: I believe that it's all racial. I mean, I hate to say it, but because it's a predominantly African-American disease, for whatever reason, we just can't get any funding.

GOLD: Brocks says that without a new medication, Kareem got progressively worse. At 36, he had to go on dialysis. He ended up in the hospital with the worst pain of his life. The doctors stabilized him but did not diagnose the underlying cause of the crisis. He was released to his mother's care but still in incredible pain. At home, Brocks ran him a warm bath to try to comfort him. She went downstairs to get him a change of clothes.

BROCKS: As I'm coming up the stairs, I hear this banging - you know a - (knocking) banging. And so I run into the bathroom. He's having a seizure. And I didn't know what to do. I was like, oh, come on. Come on. Don't do this. Don't do this to...

GOLD: She called 911. The paramedics couldn't revive him.

BROCKS: So he was laying out there in the hall, you know, for a while till, you know, I called the mortuary and everything. But - yeah, he died here with me.

GOLD: It turned out Kareem had had a series of small strokes. His organs were in failure, something Brock says the hospital missed. She believes if her son had been able to see specialists and get more consistent care - the kind he got as a child - he might still be alive today.

VICHINSKY: One of the national crises in health care is the care for adult sickle cell.

GOLD: Elliott Vichinsky, the sickle cell researcher, runs a center across the bay at Children's Hospital Oakland. It's one of only three places in California that offers specialized services for adults with the disease.

VICHINSKY: These group of people can live much longer with the management we have. And they are dying because we don't have access to care.

GOLD: But with the proper medical care, Vichinsky's center and others like it have been able to increase life expectancy by more than two decades.

I'm Jenny Gold in San Francisco.

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SIMON: Jenny Gold is with our partner Kaiser Health News. And tomorrow on Weekend Edition Sunday, Part 2 - how many sickle cell patients with the proper treatment can thrive and the clinic that's making it possible.

(SOUNDBITE OF MELODIUM'S "WE ARE ALL RIGHT HERE")

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