Teonna Woolford has always wanted six children.
“I do not know where that number comes from. “I just felt four was not enough,” said Woolford. “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 disorder affects patients’ blood cells. They become deformed, making it harder for the blood to carry oxygen and flow through the body. It can cause strokes, organ damage and frequent, debilitating pain crises.
Woolford has experienced the full spectrum of sickle cell complications. At 15, she had both her hips replaced, she was dependent on regular blood transfusions and her liver failed.
“So many complications, infections, hospitalizations, and so by the time I graduated from high school, I just felt defeated. [and] depressed, ”said Woolford, now 30, during an interview from a hospital bed in Baltimore, Maryland. She had had a sickle cell pain crisis a few days before and needed pain medication and IV fluids.
The only cure that Woolford could investigate during her late teens was a bone marrow transplant: a process that makes it possible to replace 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 could not find a perfect match, she enrolled in a clinical trial where doctors can even use half a donor.
But there was one thing that held her back.
Transplant patients should be exposed to chemotherapy, which may affect their fertility. This made Woolford hesitant. After all, she wanted another half-dozen children.
“And this doctor, he looked at me and he was like, ‘Well, I’m going to be honest. because you are probably already infertile, ” Woolford said.
Transplant side effects aside, sickle cell disease itself can damage patients’ bodies in ways that ability to have children. And researchers are still evaluating whether other treatments can also affect fertility.
But like Woolford, many in the resource-hungry sickle cell community find that they do not have access to fertility treatments.
Sickle cell ‘treatment is opposed to fertility’
Woolford was shocked when her doctor told her she was probably already infertile at the age of 19. But she was still hoping for procedures that might help to preserve her fertility. After a long search on the internet, she learned that egg freezing can cost more than $ 10,000, and her insurance will not cover it.
“So I started looking at 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, the kind of feeling that if I were to be cured of sickle cell, it would be a fair exchange 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, I still have sickle cell disease and I am infertile,” she said.
Sometimes a grim thought pops into 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 more than a century ago. Because the vast majority of sickle cell patients in the U.S. were Black, it quickly became a “Black disease,” and with it came a legacy of systemic racism that still affects patients today.
Black patients usually tend to have less social capital and less 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 is a stark contrast between 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. “Those foundations are actually working with fertility conservation centers to negotiate lower rates for affected people.”
There are clear guidelines that stipulate that children with cancer undergoing chemotherapy should be referred for fertility preservation.
Children with sickle cell disease who go through transplants are also exposed to chemotherapy, “but we do not yet really have such guidelines for people with sickle cell disease,” Pecker said.
This is not a perfect comparison, she said, 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 this applies to sickle cell and cancer patients. Without guidelines, sickle cell patients cannot be referred to appropriate care.
“We have just decided that we are comfortable with this paradigm where the treatment is set against fertility, right? Like, you can have treatment or you can have fertility. But what we say in cancer care is that you can get treatment and you can have fertility, ”Pecker said.
Expensive treatment and fight for access
Dr. Leena Nahata, a pediatric endocrinologist at Nationwide Children’s Hospital in Ohio, points to a number studies showing sickle cell disease and some treatments may adversely affect fertility. For example, some studies showed that sperm concentration in young men can be affected.
“It remains unclear how it translates directly to fertility outcomes, but at least raises concerns that it could be a problem,” Nahata said.
Even more regarding Nahata were the results of a small study its co-author who showed that some patients are unaware of the fertility risks associated with sickle cell disease.
In the US, fertility preservation and treatment coverage is not guaranteed or easily accessible, and vary from state to state. And in states that require fertility preservation coverage or treatments, some patients with sickle cell disease leave out.
Phillip Sanders, a sickle cell patient in Arkansas, was a sophomore in college when his complications from sickle cell disease got so severe that he said he spent more time in the hospital than at home.
“And so by 2016, that whole year, I had spent 60 percent of my life in the hospital,” he said.
He was getting married to his college sweetheart about that time and they wanted children. But between spending most of his days in the hospital and the effects of sickle cell disease on his body, they could not get pregnant. Their doctor said their best option is to undergo intrauterine inseminationa fertility treatment where sperm is placed directly in the uterus.
Sanders’ wife became pregnant after four attempts, none of which were covered by insurance.
“It’s so expensive. “You talk about thousands of dollars every try,” Sanders said. “I mean, of course we had to borrow money. Because, you know, at the same time I was going through school, opening a business, and I was always in the hospital. So it was extremely difficult. “
Sanders also had another clock ticking. He was enrolled for a bone marrow transplant trial using a half-pass donor to cure sickle cell disease. While paying thousands of dollars for the fertility treatment, he also started banking his sperm, which costs an additional $ 250 a year.
Sanders’ transplant was successful. He is now 31, is free of sickle cell disease and has a son, Phillip, jr.
For Teonna Woolford, it can be impossible to learn pregnancy, leading her to start a non-profit organization. By The Sickle cell Reproductive Health Education Directive, she hopes to raise awareness about sickle cell disease and sexual and reproductive health. And she would like to raise money to provide grants to patients who are struggling to afford fertility preservation and treatment.
Most days she finds the work empowering. But she recently learned her ovarian reserves are so low that they are almost undetectable. So lately, Woolford has said she’s trying to make peace with the fact that she may never conceive a child.
“It’s really hard because I don’t think many people realize that I’m fighting for something I did not have access to,” she said. “I still could not afford egg freezer. And the closer I get to being able to afford it, I’m basically told that it might not bear fruit. ”
This story comes from a reporting collaboration that includes the Indianapolis Recorder and Side effects Public Media, a public health news initiative based on WFYI. Contact Farah at email@example.com. 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.