Getting fertility care is complex. It can be harder if you have sickle cell disease
Teonna Woolford has always wanted to have six kids.
“I don't know where that number came from. I just felt like four wasn't enough,” Woolford said. “And I never wanted an odd number of children. I don't know. Six is a good number.”
Woolford was born with sickle cell disease. The genetic disorder 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, excruciating pain crises.
Woolford experienced the whole gamut of sickle cell complications. At 15, she had both her hips 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 high school, I just felt defeated [and] depressed,” Woolford, now 30, said during an interview from a hospital bed in Baltimore, Maryland. She’d had a sickle cell pain crisis a few days earlier and needed pain medication and IV fluids.
The only cure Woolford could explore during her late teens was a bone marrow transplant: a process that enables sickled cells in the patient’s body to be replaced with healthy cells from a stem cell donor. The procedure comes with 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 could use even a half-matched donor.
But there was one thing holding her back.
Transplant patients have to be exposed to chemotherapy, which could affect their fertility. This made Woolford hesitant. After all, she still wanted half a dozen kids.
“And 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 infertile because you're probably already infertile,’” Woolford said.
Transplant side effects aside, sickle cell disease itself can damage patients’ bodies in ways that affect their ability to have 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 are unable to access fertility treatments.
Sickle cell ‘treatment is pitted against fertility’
Woolford was shocked when her doctor told her she was probably already infertile at age 19. But she still held out hope for procedures that might help preserve her fertility. After a lengthy internet search, she learned egg freezing could cost more than $10,000, and her insurance wouldn’t cover it.
“So I started looking into financial resources. And I saw all these foundations [that] give away grants. But you had to have a diagnosis of cancer,” she said. “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.”
The 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 said.
Sometimes, a grim thought pops up in Woolford's mind: Maybe if she had cancer instead of sickle cell, her dreams of having biological children would not have been shattered. And she may not be wrong.
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 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 disease researcher and assistant professor of medicine at Johns Hopkins University. Pecker, who studies fertility in sickle cell disease, said there’s a stark contrast between resources available to cancer patients and 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 preservation for people with cancer,” Pecker said. “Those foundations actually work with fertility preservation centers to negotiate lower rates for affected people.”
There are clear guidelines stating children with cancer going through chemotherapy should be referred to 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 said.
It's not a perfect comparison, she said, because the kinds of chemotherapy drugs kids with cancer are exposed to are different from the ones sickle cell patients are exposed to. But fertility preservation is based on assumption of risk, and that’s true for sickle cell and cancer patients. Without guidelines, sickle cell patients may not get referred to appropriate care.
“We've just decided that we're comfortable with this paradigm where the treatment is pitted against fertility, right? 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,” Pecker said.
Expensive treatment and fighting for access
Dr. Leena Nahata, a pediatric endocrinologist at Nationwide Children's Hospital in Ohio, points to a number of studies that show sickle cell disease and some treatments may negatively impact fertility. For example, some studies have shown that sperm concentration may be affected in young men.
“It remains unclear how that translates directly to fertility outcomes, but at least raises the concern that this may be an issue,” Nahata said.
Even more concerning to Nahata were the results of a small study she co-authored that showed some patients are unaware of the fertility risks related to sickle cell disease.
In the U.S., coverage for fertility preservation and treatment is not guaranteed or easy to access, and varies from state to state. And in states that mandate coverage of fertility preservation or treatments, some leave out sickle cell disease patients.
Phillip Sanders, a sickle cell patient in Arkansas, was a sophomore in college when his sickle cell disease complications got so bad he said he spent more time in the hospital than at home.
“And so by 2016, that whole year, I spent 60 percent of my life in the hospital,” he said.
He married his college sweetheart around that time and they wanted to have children. But between him spending most of his days in the hospital and the effects of sickle cell disease on his body, they were not able to get pregnant. Their doctor said their best bet was to undergo intrauterine insemination, a fertility treatment where sperm is inserted directly into the uterus.
Sanders’ wife got pregnant after four attempts, none of which were covered by insurance.
“It's so expensive. You're talking about thousands of dollars each try,” Sanders said. “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.”
Sanders also had another clock ticking. He was enrolled in a bone marrow transplant trial that uses a half-match donor to cure sickle cell disease. While paying thousands of dollars for the fertility treatment, he also started to bank his sperm, which cost an additional $250 per year.
Sanders' transplant succeeded. He is now 31, is sickle cell disease free and has a son, Phillip, Jr.
For Teonna Woolford, learning pregnancy might be impossible led her to launch a nonprofit. Through The Sickle Cell Reproductive Health Education Directive, she hopes to raise awareness about sickle cell disease and sexual and reproductive health. And she’d like to raise money to offer grants for patients struggling to afford fertility preservation and treatment.
Most days, she finds the work empowering. But she recently learned her ovarian reserves are so low, they’re almost undetectable. So lately, Woolford said she’s been trying to come to terms with the fact that she may 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 said. “I still have not been able to afford egg freezing. And the closer I get to being able to afford it, I'm basically being told that it might not pay off.”
This story comes from a reporting collaboration that includes the Indianapolis Recorder and Side Effects Public Media, a public health news initiative based at WFYI. Contact Farah at firstname.lastname@example.org. Follow on Twitter: @Farah_Yousrym.
Farah’s reporting on sickle cell disease is supported by a grant from the USC Annenberg Center for Health Journalism’s 2022 Impact Fund for Reporting on Health Equity and Health Systems.