美国国家公共电台 NPR Sickle Cell Patients Endure Discrimination, Poor Care And Shortened Lives

 

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 sickle¹ cell disease, a disorder² 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, BYLINE³: 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 bent⁴ into a crescent shape, clogging⁵ his vessels⁶ and preventing blood from circulating oxygen to his organs. Patients with the disease suffer from problems including stroke, kidney disease and chronic⁷ pain. Sickle cell is a genetic⁸ 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 retired⁹ supervisor¹⁰ 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 avid¹¹ 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 disorders¹². 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 discriminated¹³ 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 stabilized¹⁴ him but did not diagnose the underlying¹⁵ 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 seizure¹⁶. 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 specialized¹⁷ 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 expectancy¹⁸ by more than two decades.

I'm Jenny Gold in San Francisco.

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

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")

1 sickle   

n.镰刀

参考例句：

• The gardener was swishing off the tops of weeds with a sickle.园丁正在用镰刀嗖嗖地割掉杂草的顶端。
• There is a picture of the sickle on the flag. 旗帜上有镰刀的图案。

2 disorder   

n.紊乱，混乱；骚动，骚乱；疾病，失调

参考例句：

• When returning back,he discovered the room to be in disorder.回家后，他发现屋子里乱七八糟。
• It contained a vast number of letters in great disorder.里面七零八落地装着许多信件。

3 byline   

n.署名；v.署名

参考例句：

• His byline was absent as well.他的署名也不见了。
• We wish to thank the author of this article which carries no byline.我们要感谢这篇文章的那位没有署名的作者。

4 bent   

n.爱好，癖好；adj.弯的；决心的，一心的

参考例句：

• He was fully bent upon the project.他一心扑在这项计划上。
• We bent over backward to help them.我们尽了最大努力帮助他们。

5 clogging   

堵塞，闭合

参考例句：

• This process suffers mainly from clogging the membrane. 这种过程的主要问题是滤膜的堵塞。
• And you know that eyewitness that's been clogging up the airwaves? 你知道那个充斥着电视广播的目击证人？

6 vessels   

n.血管( vessel的名词复数 )；船；容器；（具有特殊品质或接受特殊品质的）人

参考例句：

• The river is navigable by vessels of up to 90 tons. 90 吨以下的船只可以从这条河通过。 来自《简明英汉词典》
• All modern vessels of any size are fitted with radar installations. 所有现代化船只都有雷达装置。 来自《现代汉英综合大词典》

7 chronic   

adj.(疾病)长期未愈的，慢性的；极坏的

参考例句：

• Famine differs from chronic malnutrition.饥荒不同于慢性营养不良。
• Chronic poisoning may lead to death from inanition.慢性中毒也可能由虚弱导致死亡。

8 genetic   

adj.遗传的，遗传学的

参考例句：

• It's very difficult to treat genetic diseases.遗传性疾病治疗起来很困难。
• Each daughter cell can receive a full complement of the genetic information.每个子细胞可以收到遗传信息的一个完全补偿物。

9 retired   

adj.隐退的，退休的，退役的

参考例句：

• The old man retired to the country for rest.这位老人下乡休息去了。
• Many retired people take up gardening as a hobby.许多退休的人都以从事园艺为嗜好。

10 supervisor   

n.监督人，管理人，检查员，督学，主管，导师

参考例句：

• Between you and me I think that new supervisor is a twit.我们私下说，我认为新来的主管人是一个傻瓜。
• He said I was too flighty to be a good supervisor.他说我太轻浮不能成为一名好的管理员。

11 avid   

adj.热心的；贪婪的；渴望的；劲头十足的

参考例句：

• He is rich,but he is still avid of more money.他很富有,但他还想贪图更多的钱。
• She was avid for praise from her coach.那女孩渴望得到教练的称赞。

12 disorders   

n.混乱( disorder的名词复数 )；凌乱；骚乱；（身心、机能）失调

参考例句：

• Reports of anorexia and other eating disorders are on the increase. 据报告，厌食症和其他饮食方面的功能紊乱发生率正在不断增长。 来自《简明英汉词典》
• The announcement led to violent civil disorders. 这项宣布引起剧烈的骚乱。 来自《简明英汉词典》

13 discriminated   

分别，辨别，区分( discriminate的过去式和过去分词 )； 歧视，有差别地对待

参考例句：

• His great size discriminated him from his followers. 他的宽广身材使他不同于他的部下。
• Should be a person that has second liver virus discriminated against? 一个患有乙肝病毒的人是不是就应该被人歧视？

14 stabilized   

v.（使）稳定， （使）稳固( stabilize的过去式和过去分词 )

参考例句：

• The patient's condition stabilized. 患者的病情稳定下来。
• His blood pressure has stabilized. 他的血压已经稳定下来了。 来自《现代英汉综合大词典》

15 underlying   

adj.在下面的，含蓄的，潜在的

参考例句：

• The underlying theme of the novel is very serious.小说隐含的主题是十分严肃的。
• This word has its underlying meaning.这个单词有它潜在的含义。

16 seizure   

n.没收；占有；抵押

参考例句：

• The seizure of contraband is made by customs.那些走私品是被海关没收的。
• The courts ordered the seizure of all her property.法院下令查封她所有的财产。

17 specialized   

adj.专门的，专业化的

参考例句：

• There are many specialized agencies in the United Nations.联合国有许多专门机构。
• These tools are very specialized.这些是专用工具。

18 expectancy   

n.期望，预期，（根据概率统计求得）预期数额

参考例句：

• Japanese people have a very high life expectancy.日本人的平均寿命非常长。
• The atomosphere of tense expectancy sobered everyone.这种期望的紧张气氛使每个人变得严肃起来。