Teonna Woolford, 31, in Owings Mills, Maryland on November 4, 2022. Woolford has sickle cell illness and has been unable to afford fertility preservation for years.
Rosem Morton for NPR
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Rosem Morton for NPR
Teonna Woolford, 31, in Owings Mills, Maryland on November 4, 2022. Woolford has sickle cell illness and has been unable to afford fertility preservation for years.
Rosem Morton for NPR
Teonna Woolford has at all times mentioned that when it got here time to construct a household, her perfect can be to have six children.
Why six?
“I do not know the place that quantity got here from. I simply felt like 4 wasn’t sufficient,” says Woolford, a Baltimore resident. “Six is an effective quantity.”
Woolford, 31, was born with sickle cell illness. The genetic dysfunction impacts sufferers’ blood cells. They turn into misshapen, which makes it more durable for the blood to hold oxygen and circulate all through the physique. This may cause strokes, organ injury and frequent bouts of excruciating ache.
Sickle cell illness impacts an estimated 100,000 folks within the U.S. and the overwhelming majority of them are Black. Federal and charitable {dollars} devoted to sickle cell pale as compared to different much less frequent ailments that have an effect on a majority white sufferers.
Physicians and researchers say the illness is a stark instance of the well being inequities which pervade the U.S. well being system. A poignant expression of this, affected person advocates say, is the silence across the impression on fertility, and lack of reproductive and sexual well being take care of the younger folks residing with this complicated illness.
Crushing hopes for fertility
Woolford has lived by means of your complete gamut of sickle cell problems. By 15, her hip joints had turn into so broken that she needed to have each hips changed. She was depending on frequent blood transfusions to cut back ache episodes and vascular injury, and her liver was failing.
“So many problems, infections, hospitalizations, and so by the point I graduated highschool, I simply felt defeated [and] depressed,” says Woolford, who first spoke with an NPR reporter from a hospital mattress in Baltimore, Maryland. She’d skilled a sickle cell ache disaster just a few days earlier, and was nonetheless receiving ache medicine and intravenous fluids.
In her late teenagers Woolford sought out a bone marrow transplant: a therapy that allows sickled cells within the affected person’s physique to get replaced with wholesome cells from a stem cell donor. The process comes with dangers, and never everyone seems to be eligible. It additionally depends on discovering a suitable donor match. But if it really works, it may free an individual from sickle cell illness without end.
Woolford could not discover a excellent match, so she enrolled in a medical trial the place docs may use even a half-matched donor.
As a part of the bone marrow transplant, sufferers are first uncovered to chemotherapy, which may impair or get rid of fertility.
Woolford hesitated. After all, her perfect household included six kids.
Woolford has sickle cell illness and has been unable to afford fertility preservation for years. She began a non-profit to supply monetary grants for sufferers who want fertility care, and advocates for extra consciousness in regards to the results of sickle cell on sufferers’ household planning and sexual well being.
Rosem Morton for NPR
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Rosem Morton for NPR
Woolford has sickle cell illness and has been unable to afford fertility preservation for years. She began a non-profit to supply monetary grants for sufferers who want fertility care, and advocates for extra consciousness in regards to the results of sickle cell on sufferers’ household planning and sexual well being.
Rosem Morton for NPR
When she advised her physician about her fear, his response crushed her. “This physician, he checked out me and he was like, ‘Well, I’ll be sincere, with all of the problems you have already had from sickle cell, I do not know why you are even fearful about this course of making you infertile since you’re most likely already infertile.'”
Even and not using a transplant, sickle cell illness can injury sufferers’ our bodies in methods that may have an effect on their capacity to have kids, based on Dr. Leena Nahata, a pediatric endocrinologist at Nationwide Children’s Hospital in Ohio.
For girls, persistent irritation and sickling of blood cells within the ovaries could make it more durable to get pregnant. For males, sickled blood can jam contained in the blood vessels of the penis, and that may trigger painful, undesirable erections which final for hours. This situation, known as priapism, can injury sexual perform and reduce sperm depend.
And it isn’t simply the illness. Researchers are evaluating how some widely-used remedies could have an effect on fertility — for instance by lowering sperm depend.
“It stays unclear how that interprets on to fertility outcomes, however at the very least raises the priority that this can be a problem,” Nahata says.
Even extra regarding to Nahata have been the outcomes of a small research she co-authored that confirmed some sufferers are unaware of the various fertility dangers associated to sickle cell illness.
Would hope for a remedy imply giving up on fertility?
Woolford was solely 19 when her physician shocked her by telling her she was most likely already infertile. But nobody may ensure, so she held out hope that she may nonetheless bear a process to protect her fertility, earlier than present process the chemotherapy required for the bone marrow transplant.
After in depth analysis, she discovered egg freezing may price greater than $10,000, her insurance coverage would not cowl it, and she or he could not afford that on her personal.
Woolford questioned if perhaps she may discover one other approach to pay for egg freezing. “So I began wanting into monetary assets. And I noticed all these foundations [that] give away grants. But you needed to have a prognosis of most cancers,” she says.
“So lengthy story brief, I went by means of with a [bone marrow] transplant, sort of feeling like if I used to be going to be cured from sickle cell, it might be a good tradeoff to surrender my dream of organic kids.”
Unfortunately, the partial-match transplant didn’t work. Woolford’s physique rejected it.
“So, right here I’m. I’m 30, nonetheless have sickle cell illness and I’m infertile,” she says.
A grim thought nonetheless typically pops up in Woolford’s thoughts: Maybe if she had most cancers as an alternative of sickle cell, her goals of getting organic kids may nonetheless have come true.
How systemic racism impacts entry to care
The first description of sickle cell illness in medical literature was revealed over a century in the past. Because the overwhelming majority of sickle cell sufferers within the U.S. have been Black, it shortly grew to become labeled as a “Black illness,” and with that got here a legacy of systemic racism that also impacts sufferers in the present day.
Black sufferers are likely to have much less social capital and fewer assets, based on Dr. Lydia Pecker, a sickle cell illness researcher and assistant professor of drugs at Johns Hopkins University. Pecker has studied fertility in sickle cell illness, and says there is a stark distinction between assets out there to most cancers sufferers versus sickle cell sufferers, on the subject of fertility therapy.
“There are any variety of foundations, giant and small, that assist help and pay for fertility preservation for folks with most cancers,” Pecker says. “Those foundations really work with fertility preservation facilities to barter decrease charges for affected folks.”
There are clear medical guidelines stating kids with most cancers going by means of chemotherapy ought to be referred for fertility preservation.
Children with sickle cell illness going by means of transplants are uncovered to chemotherapy too, “however we do not actually have pointers like that but for folks with sickle cell illness,” Pecker says.
It’s not an ideal comparability, she provides, as a result of the sorts of chemotherapy medication utilized in pediatric most cancers are completely different from the chemotherapies utilized in sickle cell therapy. But fertility preservation will be essential when there may be any threat of treatment-associated fertility impairment. Without clear and extensively adopted medical pointers, sickle cell sufferers could not get referred to acceptable care.
Pecker says present medical follow forces sickle-cell sufferers to make a tough alternative: “Like, you’ll be able to have therapy or you’ll be able to have fertility. But what we are saying in most cancers care is you’ll be able to have therapy and you’ll be able to have fertility.”
Expensive therapy and preventing for entry
“Historically, we within the sickle cell neighborhood have actually needed to give attention to survival over high quality of life. Now, due to advances in science and the resilience of the neighborhood, we live longer. Now, it’s not sufficient to outlive. For lots of us, having an optimum high quality of life includes having kids.”
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Rosem Morton for NPR
“Historically, we within the sickle cell neighborhood have actually needed to give attention to survival over high quality of life. Now, due to advances in science and the resilience of the neighborhood, we live longer. Now, it’s not sufficient to outlive. For lots of us, having an optimum high quality of life includes having kids.”
Rosem Morton for NPR
In the U.S., medical health insurance protection for fertility preservation and therapy is just not assured and varies from state to state. Only eleven states have legal guidelines that mandate protection for fertility preservation for sufferers who bear remedies that might imperil their capacity to have organic kids – often known as iatrogenic remedies – like chemotherapy or radiation.
But even these legal guidelines do not at all times assist, says Dr. Irene Su, an OB-GYN on the University of California San Francisco, who researches fertility preservation insurance policies.
Su says these legal guidelines are often very imprecise when it comes to who qualifies: “If you give insurers room to interpret, it is attainable that they are often very broad, or they are often very slender.”
This signifies that many sickle cell illness sufferers who haven’t got this protection are pressured to pay out of pocket.
Phillip Sanders of Arkansas was a sophomore in school when his sickle cell illness problems ramped up.
“By 2016, that entire yr, I spent 60 % of my life within the hospital,” he says.
Not lengthy after, he married his school sweetheart. They wished to have kids, however have been unable to get pregnant. A physician then advised them their greatest guess was to bear intrauterine insemination, a fertility therapy the place the highest-quality sperm is chosen and inserted straight into the uterus.
Sanders’ spouse obtained pregnant after 4 makes an attempt, however none have been coated by insurance coverage.
“It’s so costly. You’re speaking about 1000’s of {dollars} every strive,” Sanders says. “I imply, we needed to, in fact, borrow cash. Because, you understand, on the identical time, I used to be going by means of faculty, opening a enterprise, and I used to be within the hospital, at all times. So it was extraordinarily powerful.”
Like Woolford, Sanders enrolled in a medical trial for a bone marrow transplant, and it was a hit.
He is now 31, is sickle cell illness free and has a son, Phillip, Jr.
Teonna Woolford for her half, has needed to give attention to different targets. After her transplant failed, the continued toll of the illness on her physique continued. She has needed to come to phrases with the impossibility of her ever having a organic baby of her personal.
Woolford launched a brand new nonprofit, The Sickle Cell Reproductive Health Education Directive, to boost consciousness of fertility points at medical conferences and amongst sufferers. A future purpose for the group is to supply monetary grants to sickle cell sufferers struggling to pay for fertility preservation and coverings.
Most days, Woolford finds the work empowering. On different days, she admits it reminds her of the awful private actuality that she’s going to most likely by no means conceive a baby.
“It’s actually onerous, as a result of I do not suppose lots of people notice that I’m preventing for one thing that I did not have entry to,” she says.
At this level, she mentioned, it is now not a medical justice battle. It’s a reproductive justice one.
Reporting for this story was supported by the USC Annenberg Center for Health Journalism’s Impact Fund for Reporting on Health Equity and Health Systems. It was produced in partnership with Side Effects Public Media, WFYI and KHN (Kaiser Health News).