美国国家公共电台 NPR--For patients with sickle cell disease, fertility care is about reproductive justice

For patients with sickle¹ cell disease, fertility care is about reproductive justice

Transcript²

Teonna Woolford has always said that when it came time to build a family, her ideal would be to have six kids.

Why six?

"I don't know where that number came from. I just felt like four wasn't enough," says Woolford, a Baltimore resident. "Six is a good number."

Woolford, 31, was born with sickle cell disease. The genetic³ disorder⁴ affects patients' blood cells. They become misshapen, which makes it harder for the blood to carry oxygen and flow throughout the body. This can cause strokes, organ damage and frequent bouts⁵ of excruciating pain.

Sickle cell disease affects an estimated 100,000 people in the U.S. and the vast majority of them are Black. Federal and charitable dollars dedicated⁶ to sickle cell pale in comparison to other less common diseases that affect a majority white patients.

KHN logo

This story was produced in partnership⁷ with Kaiser Health News.

Physicians and researchers say the disease is a stark⁹ example of the health inequities which pervade¹⁰ the U.S. health system. A poignant¹¹ expression of this, patient advocates say, is the silence around the impact on fertility, and lack of reproductive and sexual health care for the young people living with this complex disease.

Crushing hopes for fertility

Woolford has lived through the entire gamut¹² of sickle cell complications. By 15, her hip⁸ joints¹³ had become so damaged that she had to have both hips¹⁴ replaced. She was dependent on frequent blood transfusions¹⁵ to reduce pain episodes and vascular¹⁶ damage, and her liver was failing.

"So many complications, infections, hospitalizations, and so by the time I graduated high school, I just felt defeated [and] depressed," says Woolford, who first spoke¹⁷ with an NPR reporter from a hospital bed in Baltimore, Maryland. She'd experienced a sickle cell pain crisis a few days earlier, and was still receiving pain medication and intravenous fluids.

In her late teens Woolford sought out a bone marrow¹⁸ transplant: a treatment that enables sickled¹⁹ cells in the patient's body to be replaced with healthy cells from a stem cell donor²⁰. The procedure comes with risks, and not everyone is eligible²¹. It also relies on finding a compatible donor match. But if it works, it can free a person from sickle cell disease forever.

Woolford couldn't find a perfect match, so she enrolled²² in a clinical trial where doctors could use even a half-matched donor.

As part of the bone marrow transplant, patients are first exposed to chemotherapy, which can impair²³ or eliminate fertility.

Woolford hesitated. After all, her ideal family included six children.

When she told her doctor about her worry, his response crushed her. "This doctor, he looked at me and he was like, 'Well, I'll be honest, with all the complications you've already had from sickle cell, I don't know why you're even worried about this process making you infertile²⁴ because you're probably already infertile.'"

Even without a transplant, sickle cell disease can damage patients' bodies in ways that can affect their ability to have children, according to Dr. Leena Nahata, a pediatric endocrinologist at Nationwide Children's Hospital in Ohio.

For women, chronic²⁵ inflammation and sickling²⁶ of blood cells in the ovaries can make it harder to get pregnant. For men, sickled blood can jam inside the blood vessels²⁷ of the penis, and that can cause painful, unwanted erections which last for hours. This condition, called priapism, can damage sexual function and decrease sperm²⁸ count.

And it's not just the disease. Researchers are evaluating how some widely-used treatments may affect fertility — for example by decreasing sperm count.

"It remains²⁹ unclear how that translates directly to fertility outcomes, but at least raises the concern that this may be an issue," Nahata says.

Even more concerning to Nahata were the results of a small study she co-authored that showed some patients are unaware³⁰ of the many fertility risks related to sickle cell disease.

Would hope for a cure mean giving up on fertility?

Woolford was only 19 when her doctor shocked her by telling her she was probably already infertile. But no one could be sure, so she held out hope that she might still undergo a procedure to preserve her fertility, before undergoing the chemotherapy required for the bone marrow transplant.

After extensive research, she learned egg freezing could cost more than $10,000, her insurance wouldn't cover it, and she couldn't afford that on her own.

Woolford wondered if maybe she could find another way to pay for egg freezing. "So I started looking into financial resources. And I saw all these foundations [that] give away grants. But you had to have a diagnosis³¹ of cancer," she says.

"So long story short, I went through with a [bone marrow] transplant, kind of feeling like if I was going to be cured from sickle cell, it'd be a fair tradeoff to give up my dream of biological children."

Unfortunately, the partial-match transplant did not work. Woolford's body rejected it.

"So, here I am. I am 30, still have sickle cell disease and I'm infertile," she says.

A grim thought still sometimes pops up in Woolford's mind: Maybe if she had cancer instead of sickle cell, her dreams of having biological children could still have come true.

How systemic racism³² affects access to care

The first description of sickle cell disease in medical literature was published over a century ago. Because the vast majority of sickle cell patients in the U.S. were Black, it quickly became labeled as a "Black disease," and with that came a legacy³³ of systemic racism that still affects patients today.

Black patients tend to have less social capital and fewer resources, according to Dr. Lydia Pecker, a sickle cell disease researcher and assistant professor of medicine at Johns Hopkins University. Pecker has studied fertility in sickle cell disease, and says there's a stark contrast between resources available to cancer patients versus³⁴ sickle cell patients, when it comes to fertility treatment.

"There are any number of foundations, large and small, that help support and pay for fertility preservation³⁵ for people with cancer," Pecker says. "Those foundations actually work with fertility preservation centers to negotiate lower rates for affected³⁶ people."

There are clear clinical guidelines stating children with cancer going through chemotherapy should be referred for fertility preservation.

Children with sickle cell disease going through transplants are exposed to chemotherapy too, "but we don't really have guidelines like that yet for people with sickle cell disease," Pecker says.

It's not a perfect comparison, she adds, because the kinds of chemotherapy drugs used in pediatric cancer are different from the chemotherapies used in sickle cell treatment. But fertility preservation can be crucial when there is any risk of treatment-associated fertility impairment. Without clear and widely adopted clinical guidelines, sickle cell patients may not get referred to appropriate care.

Pecker says current medical practice forces sickle-cell patients to make a difficult choice: "Like, you can have treatment or you can have fertility. But what we say in cancer care is you can have treatment and you can have fertility."

Expensive treatment and fighting for access

In the U.S., health insurance coverage³⁷ for fertility preservation and treatment is not guaranteed and varies from state to state. Only eleven states have laws that mandate³⁸ coverage for fertility preservation for patients who undergo treatments that could imperil their ability to have biological children – usually referred to as iatrogenic treatments – like chemotherapy or radiation.

But even those laws don't always help, says Dr. Irene Su, an OB-GYN at the University of California San Diego, who researches fertility preservation policies.

Su says these laws are usually very vague in terms of who qualifies: "If you give insurers room to interpret, it's possible that they can be very broad, or they can be very narrow."

This means that many sickle cell disease patients who don't have this coverage are forced to pay out of pocket.

Phillip Sanders of Arkansas was a sophomore³⁹ in college when his sickle cell disease complications ramped⁴⁰ up.

"By 2016, that whole year, I spent 60 percent of my life in the hospital," he says.

Not long after, he married his college sweetheart. They wanted to have children, but were unable to get pregnant. A doctor then told them their best bet was to undergo intrauterine insemination, a fertility treatment where the highest-quality sperm is selected and inserted directly into the uterus.

Sanders' wife got pregnant after four attempts, but none were covered by insurance.

"It's so expensive. You're talking about thousands of dollars each try," Sanders says. "I mean, we had to, of course, borrow money. Because, you know, at the same time, I was going through school, opening a business, and I was in the hospital, always. So it was extremely tough."

Like Woolford, Sanders enrolled in a clinical trial for a bone marrow transplant, and it was a success.

He is now 31, is sickle cell disease free and has a son, Phillip, Jr.

Teonna Woolford for her part, has had to focus on other goals. After her transplant failed, the ongoing⁴¹ toll⁴² of the disease on her body continued. She has had to come to terms with the impossibility of her ever having a biological child of her own.

Woolford launched a new nonprofit, The Sickle Cell Reproductive Health Education Directive, to raise awareness⁴³ of fertility issues at medical conferences and among patients. A future goal for the organization is to provide financial grants to sickle cell patients struggling to pay for fertility preservation and treatments.

Most days, Woolford finds the work empowering. On other days, she admits it reminds her of the bleak⁴⁴ personal reality that she will probably never conceive a child.

"It's really hard, because I don't think a lot of people realize that I'm fighting for something that I didn't have access to," she says.

At this point, she said, it's no longer a medical justice fight. It's a reproductive justice one.

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 transcript   

n.抄本，誊本，副本，肄业证书

参考例句：

• A transcript of the tapes was presented as evidence in court.一份录音带的文字本作为证据被呈交法庭。
• They wouldn't let me have a transcript of the interview.他们拒绝给我一份采访的文字整理稿。

3 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。

4 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。

5 bouts   

n.拳击（或摔跤）比赛( bout的名词复数 )；一段（工作）；（尤指坏事的）一通；（疾病的）发作

参考例句：

• For much of his life he suffered from recurrent bouts of depression. 他的大半辈子反复发作抑郁症。 来自《简明英汉词典》
• It was one of fistiana's most famous championship bouts. 这是拳击界最有名的冠军赛之一。 来自《现代英汉综合大词典》

6 dedicated   

adj.一心一意的；献身的；热诚的

参考例句：

• He dedicated his life to the cause of education.他献身于教育事业。
• His whole energies are dedicated to improve the design.他的全部精力都放在改进这项设计上了。

7 partnership   

n.合作关系，伙伴关系

参考例句：

• The company has gone into partnership with Swiss Bank Corporation.这家公司已经和瑞士银行公司建立合作关系。
• Martin has taken him into general partnership in his company.马丁已让他成为公司的普通合伙人。

8 hip   

n.臀部，髋；屋脊

参考例句：

• The thigh bone is connected to the hip bone.股骨连着髋骨。
• The new coats blouse gracefully above the hip line.新外套在臀围线上优美地打着褶皱。

9 stark   

adj.荒凉的；严酷的；完全的；adv.完全地

参考例句：

• The young man is faced with a stark choice.这位年轻人面临严峻的抉择。
• He gave a stark denial to the rumor.他对谣言加以完全的否认。

10 pervade   

v.弥漫，遍及，充满，渗透，漫延

参考例句：

• Science and technology have come to pervade every aspect of our lives.科学和技术已经渗透到我们生活的每一个方面。
• The smell of sawdust and glue pervaded the factory.工厂里弥漫着锯屑和胶水的气味。

11 poignant   

adj.令人痛苦的，辛酸的，惨痛的

参考例句：

• His lyrics are as acerbic and poignant as they ever have been.他的歌词一如既往的犀利辛辣。
• It is especially poignant that he died on the day before his wedding.他在婚礼前一天去世了，这尤其令人悲恸。

12 gamut   

n.全音阶，(一领域的)全部知识

参考例句：

• The exhibition runs the whole gamut of artistic styles.这次展览包括了所有艺术风格的作品。
• This poem runs the gamut of emotions from despair to joy.这首诗展现了从绝望到喜悦的感情历程。

13 joints   

接头( joint的名词复数 )； 关节； 公共场所（尤指价格低廉的饮食和娱乐场所） （非正式）； 一块烤肉 （英式英语）

参考例句：

• Expansion joints of various kinds are fitted on gas mains. 各种各样的伸缩接头被安装在煤气的总管道上了。
• Expansion joints of various kinds are fitted on steam pipes. 各种各样的伸缩接头被安装在蒸气管道上了。

14 hips   

abbr.high impact polystyrene 高冲击强度聚苯乙烯，耐冲性聚苯乙烯n.臀部( hip的名词复数 )；[建筑学]屋脊；臀围（尺寸）；臀部…的

参考例句：

• She stood with her hands on her hips. 她双手叉腰站着。
• They wiggled their hips to the sound of pop music. 他们随着流行音乐的声音摇晃着臀部。 来自《简明英汉词典》

15 transfusions   

n.输血( transfusion的名词复数 )；输液；倾注；渗透

参考例句：

• Still, transfusions have apparently never spread the disease, even among hemophiliacs. 还有，输血很明显从未传播过这种病，即使在血友病人之间也是如此。 来自英汉非文学 - 生命科学 - 口蹄疫疯牛病
• Blood transfusions are a special, limited example of tissue transplantation. 输血是一个特殊的、有限制的组织移植的例子。 来自辞典例句

16 vascular   

adj.血管的，脉管的

参考例句：

• The mechanism of this anomalous vascular response is unknown.此种不规则的血管反应的机制尚不清楚。
• The vascular changes interfere with diffusion of nutrients from plasma into adjacent perivascular tissue and cells.这些血管变化干扰了营养物质从血浆中向血管周围邻接的组织和细胞扩散。

17 spoke   

n.（车轮的）辐条；轮辐；破坏某人的计划；阻挠某人的行动 v.讲，谈（speak的过去式）；说；演说；从某种观点来说

参考例句：

• They sourced the spoke nuts from our company.他们的轮辐螺帽是从我们公司获得的。
• The spokes of a wheel are the bars that connect the outer ring to the centre.辐条是轮子上连接外圈与中心的条棒。

18 marrow   

n.骨髓；精华；活力

参考例句：

• It was so cold that he felt frozen to the marrow. 天气太冷了，他感到寒冷刺骨。
• He was tired to the marrow of his bones.他真是累得筋疲力尽了。

19 sickled   

vt.用镰刀割…（sickle的过去式与过去分词形式）

参考例句：

20 donor   

n.捐献者；赠送人；(组织、器官等的)供体

参考例句：

• In these cases,the recipient usually takes care of the donor afterwards.在这类情况下，接受捐献者以后通常会照顾捐赠者。
• The Doctor transplanted the donor's heart to Mike's chest cavity.医生将捐赠者的心脏移植进麦克的胸腔。

21 eligible   

adj.有条件被选中的；(尤指婚姻等)合适(意)的

参考例句：

• He is an eligible young man.他是一个合格的年轻人。
• Helen married an eligible bachelor.海伦嫁给了一个中意的单身汉。

22 enrolled   

adj.入学登记了的v.[亦作enrol]( enroll的过去式和过去分词 )；登记，招收，使入伍（或入会、入学等），参加，成为成员；记入名册；卷起，包起

参考例句：

• They have been studying hard from the moment they enrolled. 从入学时起，他们就一直努力学习。 来自《简明英汉词典》
• He enrolled with an employment agency for a teaching position. 他在职业介绍所登了记以谋求一个教师的职位。 来自《简明英汉词典》

23 impair   

v.损害，损伤；削弱，减少

参考例句：

• Loud noise can impair your hearing.巨大的噪音有损听觉。
• It can not impair the intellectual vigor of the young.这不能磨灭青年人思想活力。

24 infertile   

adj.不孕的；不肥沃的，贫瘠的

参考例句：

• Plants can't grow well in the infertile land.在贫瘠的土地上庄稼长不好。
• Nobody is willing to till this infertile land.这块薄田没有人愿意耕种。

25 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。

26 sickling   

镰状化，镰状形成

参考例句：

27 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》

28 sperm   

n.精子，精液

参考例句：

• Only one sperm fertilises an egg.只有一个精子使卵子受精。
• In human reproduction,one female egg is usually fertilized by one sperm.在人体生殖过程中，一个精子使一个卵子受精。

29 remains   

n.剩余物，残留物；遗体，遗迹

参考例句：

• He ate the remains of food hungrily.他狼吞虎咽地吃剩余的食物。
• The remains of the meal were fed to the dog.残羹剩饭喂狗了。

30 unaware   

a.不知道的，未意识到的

参考例句：

• They were unaware that war was near. 他们不知道战争即将爆发。
• I was unaware of the man's presence. 我没有察觉到那人在场。

31 diagnosis   

n.诊断，诊断结果，调查分析，判断

参考例句：

• His symptoms gave no obvious pointer to a possible diagnosis.他的症状无法作出明确的诊断。
• The engineer made a complete diagnosis of the bridge's collapse.工程师对桥的倒塌做一次彻底的调查分析。

32 racism   

n.民族主义；种族歧视(意识)

参考例句：

• He said that racism is endemic in this country.他说种族主义在该国很普遍。
• Racism causes political instability and violence.种族主义道致政治动荡和暴力事件。

33 legacy   

n.遗产，遗赠；先人(或过去)留下的东西

参考例句：

• They are the most precious cultural legacy our forefathers left.它们是我们祖先留下来的最宝贵的文化遗产。
• He thinks the legacy is a gift from the Gods.他认为这笔遗产是天赐之物。

34 versus   

prep.以…为对手，对；与…相比之下

参考例句：

• The big match tonight is England versus Spain.今晚的大赛是英格兰对西班牙。
• The most exciting game was Harvard versus Yale.最富紧张刺激的球赛是哈佛队对耶鲁队。

35 preservation   

n.保护，维护，保存，保留，保持

参考例句：

• The police are responsible for the preservation of law and order.警察负责维持法律与秩序。
• The picture is in an excellent state of preservation.这幅画保存得极为完好。

36 affected   

adj.不自然的，假装的

参考例句：

• She showed an affected interest in our subject.她假装对我们的课题感到兴趣。
• His manners are affected.他的态度不自然。

37 coverage   

n.报导，保险范围，保险额，范围，覆盖

参考例句：

• There's little coverage of foreign news in the newspaper.报纸上几乎没有国外新闻报道。
• This is an insurance policy with extensive coverage.这是一项承保范围广泛的保险。

38 mandate   

n.托管地；命令，指示

参考例句：

• The President had a clear mandate to end the war.总统得到明确的授权结束那场战争。
• The General Election gave him no such mandate.大选并未授予他这种权力。

39 sophomore   

n.大学二年级生；adj.第二年的

参考例句：

• He is in his sophomore year.他在读二年级。
• I'm a college sophomore majoring in English.我是一名英语专业的大二学生。

40 ramped   

土堤斜坡( ramp的过去式和过去分词 )； 斜道； 斜路； （装车或上下飞机的）活动梯

参考例句：

• With the arrival of George Lucas, the pace has ramped up. 随着乔治·卢卡斯的到来，速度大大加快。
• They also sold corporate bonds as the global financial crisis ramped up. 在全球金融危机加剧之际，他们还抛售了公司债券。

41 ongoing   

adj.进行中的，前进的

参考例句：

• The problem is ongoing.这个问题尚未解决。
• The issues raised in the report relate directly to Age Concern's ongoing work in this area.报告中提出的问题与“关心老人”组织在这方面正在做的工作有直接的关系。

42 toll   

n.过路(桥)费；损失，伤亡人数；v.敲(钟)

参考例句：

• The hailstone took a heavy toll of the crops in our village last night.昨晚那场冰雹损坏了我们村的庄稼。
• The war took a heavy toll of human life.这次战争夺去了许多人的生命。

43 awareness   

n.意识，觉悟，懂事，明智

参考例句：

• There is a general awareness that smoking is harmful.人们普遍认识到吸烟有害健康。
• Environmental awareness has increased over the years.这些年来人们的环境意识增强了。

44 bleak   

adj.(天气)阴冷的；凄凉的；暗淡的

参考例句：

• They showed me into a bleak waiting room.他们引我来到一间阴冷的会客室。
• The company's prospects look pretty bleak.这家公司的前景异常暗淡。