Sickle cell disease takes a hidden toll on fertility : Shots - Health News The disease, which predominantly affects patients of color, can damage the body in ways that can make it difficult to have a child. But patients don't always have access to fertility care.

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

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: [POST-BROADCAST CORRECTION: In this story, we mistakenly say 11 states have laws mandating coverage of fertility preservation treatments for patients facing other medical treatments that could impair fertility. In fact, 12 states have such laws. Also, the audio incorrectly says Irene Su is with UC San Francisco; in fact, she is with UC San Diego.]

STEVE INSKEEP, HOST:

People with sickle cell disease come to learn its effects all too well. It causes frequent pain. It can lead to tissue damage. And it also can make it harder to have biological children. WFYI's Farah Yousry reports that some patients do not realize that last fact and even those who do often don't get the fertility care they need.

FARAH YOUSRY, BYLINE: The first time I spoke with Teonna Woolford about her dreams of having a family, she was hooked up to pain meds and IV fluids at an ICU in Baltimore. She tells me she always wanted to have exactly six kids. Why six?

TEONNA WOOLFORD: I don't know where that number came from. I just - I felt like four wasn't enough, and I never wanted an odd number of children. So I don't know. Six is a good number.

YOUSRY: Woolford has sickle cell disease. Sickle cell disease is a genetic disorder that makes red blood cells change from the typical doughnut shape into the shape of a banana or a sickle. The misshapen blood cells get jammed in vessels, which can be extremely painful. This can also cause tissue death and organ failure. By the time Wolford turned 15, she'd had both her hips replaced and needed regular blood transfusions.

WOOLFORD: So many complications, infections, hospitalizations, and so by the time I graduated high school, I just felt, like, defeated, depressed.

YOUSRY: The ongoing damage from sickle cell can make it hard to have children. For women, it's things like chronic inflammation and sickling in the ovaries. For men, it can damage sexual function and decrease sperm count. Not only that - the treatments can affect fertility, too. One possible cure for sickle cell disease is a bone marrow transplant. Woolford enrolled in a clinical trial where they tried to use a donor that is a partial match. Then she learned a transplant meant exposure to chemotherapy drugs that would affect her future fertility. That gave Woolford pause. She was 19 at the time and still wanted half a dozen kids.

WOOLFORD: And this doctor, he looked at me and he was like, well, honestly, 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. That was the first time that I had heard that sickle cell could affect fertility.

YOUSRY: She held out hope because freezing her eggs before the transplant was still an option. Then she learned it would cost tens of thousands of dollars and her insurance wouldn't cover it. Some charitable foundations help cover the cost of egg harvesting. But Woolford learned that most are for cancer patients.

WOOLFORD: So long story short, I went through with the transplant kind of feeling like if I was going to be cured from sickle cell, it'd be a fair trade-off to give up my dream of biological children.

YOUSRY: The transplant didn't work, and she fears...

WOOLFORD: Here I am at 30, I still have sickle cell and I'm infertile.

YOUSRY: The vast majority of sickle cell patients in the U.S. are Black. Hematologist Lydia Pecker says, because of systemic racism, they just don't have access to the same kinds of resources. Dr. Pecker studies fertility and sickle cell at Johns Hopkins. She says for kids with cancer, medical guidelines help ensure they get referred for fertility preservation before undergoing chemo. Pecker says it's not the same with sickle cell guidelines, and those patients may not get that referral.

LYDIA PECKER: 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.

YOUSRY: Only 11 states have laws that mandate coverage for fertility preservation for any patients facing treatments like chemo or radiation that could put their ability to have biological children at risk. But even those laws don't always help, says Dr. Irene Su, an OB who studies this at UC San Francisco. She says these laws are usually very vague in terms of who qualifies.

IRENE SU: If you give insurers room to interpret, it's possible that they can be very broad or they can be very narrow.

YOUSRY: Teonna Woolford is now 30, and she's infertile. Nonetheless, she launched a nonprofit to raise awareness and funding to help other sickle cell patients afford fertility treatment.

WOOLFORD: Most days it's empowering. On some days 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.

YOUSRY: She says right now, it's no longer a medical fight. It's a reproductive justice one. For NPR News, I'm Farah Yousry in Indianapolis.

INSKEEP: This story comes from NPR's partnership with Side Effects Public Media and Kaiser Health News.

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