Getting fertility care is complex. This may be more difficult if you have sickle cell disease

Teonna Woolford always wanted to have six children.

“I don’t know where that figure comes from. I just felt like four wasn’t enough,” Woolford said. “And I never wanted an odd number of children. I do not know. Six is ​​a good number.

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Woolford was born with sickle cell disease. The genetic disease affects the blood cells of patients. They become deformed, making it harder for blood to carry oxygen and circulate throughout the body. This can cause strokes, organ damage, and frequent excruciating pain attacks.

Woolford experienced the full range of complications of sickle cell disease. At 15, both of her hips were replaced, she was dependent on frequent blood transfusions and her liver was failing.

“So many complications, infections, hospitalizations, and so by the time I graduated from high school, I just felt defeated. [and] depressed,” Woolford, now 30, said during an interview from a hospital bed in Baltimore, Maryland. She had had an attack of sickle cell pain a few days earlier and needed painkillers and intravenous fluids.

The only remedy Woolford could explore in his late teens was a bone marrow transplant: a process that replaces sickle cells in the patient’s body with healthy cells from a stem cell donor. The procedure involves risks and not everyone is eligible. It also relies on finding a perfect match. But if it works, the results can be life changing.

Because Woolford couldn’t find a perfect match, she enrolled in a clinical trial where doctors might even use a half-matched donor.

But there was one thing holding her back.

Transplant patients must be exposed to chemotherapy, which could affect their fertility. This made Woolford hesitant. After all, she still wanted half a dozen children.

“And this doctor, he looked at me and he was like, ‘Well, I’m going to be honest, with all the complications you’ve ever had from sickle cell disease, I don’t know why you even care. of this process. making you sterile because you’re probably already sterile,” Woolford said.

Aside from the side effects of the transplant, sickle cell disease itself can damage patients’ bodies in ways that affect their possibility of having children. And researchers are still evaluating whether other treatments may also affect fertility.

But like Woolford, many in the resource-strapped sickle cell community find they cannot access fertility treatments.

Teonna Woolford, a sickle cell patient in Baltimore, couldn’t afford to preserve her fertility for years. She started a non-profit organization to provide financial grants to patients who need fertility care and advocates for greater awareness of the effects of sickle cell disease on family planning and patients’ sexual health. Provided

The “sickle cell treatment opposes fertility”

Woolford was shocked when her doctor told her she was probably already sterile at 19. But she still held out hope for procedures that might help her. preserve fertility. After a long search on the internet, she learned that egg freezing could cost upwards of $10,000 and her insurance would not cover it.

“So I started looking for financial resources. And I’ve seen all these foundations [that] give grants. But you had to have a cancer diagnosis,” she said. “So long story short, I’ve been through a [bone marrow] transplant, I felt that if I was going to be cured of sickle cell disease, it would be a fair compromise to give up my dream of biological children.

The transplant didn’t work. Woolford’s body rejected him.

“So here I am. I’m 30, I still have sickle cell disease and I’m infertile,” she said.

Sometimes a dark thought pops into Woolford’s mind: maybe if she had had cancer instead of sickle cell disease, her dreams of having biological children wouldn’t have been shattered. And she might not be wrong.

The first description of sickle cell disease in the medical literature was published over a century ago. Because the vast majority of sickle cell patients in the United States were black, it was quickly labeled a “black disease,” and with that came a legacy of systemic racism that still affects patients today.

Black patients generally tend to have less social capital and fewer resources, said Dr Lydia Pecker, a sickle cell researcher and assistant professor of medicine at Johns Hopkins University. Pecker, who studies fertility in sickle cell disease, said there is a stark contrast between the resources available to cancer patients and sickle cell patients when it comes to fertility treatment.

“There are a number of foundations, large and small, that help support and pay for fertility preservation for people with cancer,” Pecker said. “These foundations actually work with fertility preservation centers to negotiate lower rates for those affected.”

There are clear guidelines that children with cancer undergoing chemotherapy should be referred to fertility preservation.

Children with sickle cell disease who undergo transplants are also exposed to chemotherapy, “but we don’t really have any guidelines like that for people with sickle cell disease yet,” Pecker said.

It’s not a perfect comparison, she says, because the types of chemotherapy drugs that children with cancer are exposed to are different from those that sickle cell patients are exposed to. But fertility preservation is based on the assumption of risk, and that’s true for patients with sickle cell disease and cancer. Without guidelines, patients with sickle cell disease may not be referred to appropriate care.

“We just decided that we’re comfortable with this paradigm where treatment is opposed to fertility, right? Like, you can have treatment or you can have fertility. But what we’re saying in cancer care is you can have treatment and you can have fertility,” Pecker said.

Expensive treatment and struggle for access

Dr. Leena Nahatapediatric endocrinologist at Nationwide Children’s Hospital in Ohio, points out a number of studies who show sickle cell disease and certain treatments can have a negative impact on fertility. For instance, some studies showed that sperm concentration can be affected in young men.

“It’s still unclear how this translates directly to fertility outcomes, but it does at least raise concern that it could be a problem,” Nahata said.

Even more worrying for Nahata were the results of a small study she co-authored which showed that some patients are unaware of the fertility risks associated with sickle cell disease.

In the United States, coverage for fertility preservation and treatment is neither guaranteed nor readily available, and varied from one state to another. And in states that mandate fertility preservation or treatment coverage, some leave out patients with sickle cell disease.

Phillip Sanders, a sickle cell patient from Arkansas, was a sophomore in college when his sickle cell complications got so bad he said he spent more time in the hospital than at home.

“And so in 2016, that whole year, I spent 60% of my life in hospital,” he said.

He married his college girlfriend around this time and they wanted to have kids. But between the fact that he spends most of his days in the hospital and the effects of sickle cell disease on his body, they couldn’t get pregnant. Their doctor said their best bet was to undergo intrauterine inseminationfertility treatment where sperm is inserted directly into the uterus.

Sanders’ wife became pregnant after four attempts, none of which were covered by insurance.

“It’s so expensive. You’re talking thousands of dollars on every try,” Sanders said. “I mean, we had to, of course, borrow money. Because, you know, at the same time, I was going to school, I was opening a business, and I was always in the hospital. So it was extremely hard. »

Sanders also had another countdown. He was enrolled in a bone marrow transplant trial that uses a half-matched donor to cure sickle cell disease. While paying thousands of dollars for fertility treatment, he also started storing his sperm, which costs an extra $250 a year.

Sanders’ transplant was successful. He is now 31, free of sickle cell disease, and has a son, Phillip, Jr.

For Teonna Woolford, learning pregnancy might be impossible led her to start a non-profit organization. Through The guideline on sickle cell reproductive health education, she hopes to raise awareness about sickle cell disease and sexual and reproductive health. And she would like to raise funds to provide grants for patients who struggle to afford fertility preservation and treatment.

Most of the time, she finds the work stimulating. But she recently learned that her ovarian reserves are so low they are almost undetectable. Lately, Woolford said she was trying to come to terms with the fact that she might never conceive.

“It’s really hard because I don’t think a lot of people realize I’m fighting for something that I didn’t have access to,” she said. “I still can’t afford to freeze eggs. And the closer I get to being able to afford it, I’m basically being told it might not pay off.

This story comes from a reporting collaboration that includes the Indianapolis Recorder and Public media on side effects, a public health information initiative based at WFYI. Contact Farah at [email protected] Follow on Twitter: @Farah_Yousrym. Farah’s reporting on sickle cell disease is supported by a grant from the 2022 Impact Fund for Reporting on Health Equity and Health Systems at the USC Annenberg Center for Health Journalism.

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