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 stated that when it got here time to construct a household, her splendid 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 efficient quantity.”
Woolford, 31, was born with sickle cell disease. The genetic dysfunction impacts sufferers’ blood cells. They turn into misshapen, which makes it tougher for the blood to hold oxygen and stream all through the physique. This could trigger strokes, organ harm and frequent bouts of excruciating ache.
Sickle cell illness impacts an estimated 100,000 people in the U.S. and the vast majority of them are Black. Federal and charitable {dollars} devoted to sickle cell pale in comparison to different much less widespread 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 influence on fertility, and lack of reproductive and sexual well being look after the younger folks dwelling with this complicated illness.
Crushing hopes for fertility
Woolford has lived by means of the whole gamut of sickle cell issues. 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 scale back ache episodes and vascular harm, and her liver was failing.
“So many issues, 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 a number of days earlier, and was nonetheless receiving ache treatment and intravenous fluids.
In her late teenagers Woolford sought out a bone marrow transplant: a remedy 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 when it really works, it may well free an individual from sickle cell illness endlessly.
Woolford could not discover a good match, so she enrolled in a medical trial the place doctors could use even a half-matched donor.
As a part of the bone marrow transplant, sufferers are first uncovered to chemotherapy, which might impair or eliminate fertility.
Woolford hesitated. In any case, her splendid household included six youngsters.
Woolford has sickle cell illness and has been unable to afford fertility preservation for years. She began a non-profit to offer monetary grants for sufferers who want fertility care, and advocates for extra consciousness concerning 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 offer monetary grants for sufferers who want fertility care, and advocates for extra consciousness concerning 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, ‘Nicely, I will be sincere, with all of the issues you’ve got already had from sickle cell, I do not know why you are even anxious about this course of making you infertile since you’re most likely already infertile.'”
Even with out a transplant, sickle cell illness can harm sufferers’ our bodies in methods that may have an effect on their ability to have children, based on Dr. Leena Nahata, a pediatric endocrinologist at Nationwide Youngsters’s Hospital in Ohio.
For girls, persistent irritation and sickling of blood cells within the ovaries could make it tougher 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 harm sexual perform and reduce sperm depend.
And it isn’t simply the illness. Researchers are evaluating how some widely-used therapies might have an effect on fertility — for instance by reducing sperm count.
“It stays unclear how that interprets on to fertility outcomes, however not less than raises the priority that this can be a problem,” Nahata says.
Much more regarding to Nahata have been the outcomes of a small study she co-authored that confirmed some sufferers are unaware of the various fertility dangers associated to sickle cell illness.
Would hope for a treatment imply giving up on fertility?
Woolford was solely 19 when her physician shocked her by telling her she was most likely already infertile. However nobody may make sure, so she held out hope that she may nonetheless endure a process to preserve her fertility, earlier than present process the chemotherapy required for the bone marrow transplant.
After in depth analysis, she realized egg freezing may price greater than $10,000, her insurance coverage would not cowl it, and he or she could not afford that on her personal.
Woolford puzzled if possibly she may discover one other solution to pay for egg freezing. “So I began wanting into monetary sources. And I noticed all these foundations [that] give away grants. However you needed to have a prognosis of most cancers,” she says.
“So lengthy story quick, 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 would be a good tradeoff to surrender my dream of organic youngsters.”
Sadly, 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 am infertile,” she says.
A grim thought nonetheless generally pops up in Woolford’s thoughts: Perhaps if she had most cancers as a substitute of sickle cell, her desires of getting organic youngsters may nonetheless have come true.
How systemic racism impacts entry to care
The primary description of sickle cell illness in medical literature was revealed over a century ago. As a result of the overwhelming majority of sickle cell sufferers within the U.S. have been Black, it shortly turned labeled as a “Black illness,” and with that got here a legacy of systemic racism that also impacts sufferers as we speak.
Black sufferers are likely to have less social capital and fewer sources, based on Dr. Lydia Pecker, a sickle cell illness researcher and assistant professor of medication at Johns Hopkins College. Pecker has studied fertility in sickle cell illness, and says there is a stark distinction between sources out there to most cancers sufferers versus sickle cell sufferers, on the subject of fertility remedy.
“There are any variety of foundations, massive and small, that assist assist and pay for fertility preservation for folks with most cancers,” Pecker says. “These foundations truly work with fertility preservation facilities to barter decrease charges for affected folks.”
There are clear medical guidelines stating children with cancer going by means of chemotherapy must be referred for fertility preservation.
Youngsters with sickle cell illness going by means of transplants are uncovered to chemotherapy too, “however we do not actually have tips like that but for folks with sickle cell illness,” Pecker says.
It is not an ideal comparability, she provides, as a result of the sorts of chemotherapy medicine utilized in pediatric most cancers are totally different from the chemotherapies utilized in sickle cell remedy. However fertility preservation may be essential when there may be any danger of treatment-associated fertility impairment. With out clear and extensively adopted medical tips, sickle cell sufferers might not get referred to applicable care.
Pecker says present medical observe forces sickle-cell sufferers to make a tough alternative: “Like, you may have remedy or you may have fertility. However what we are saying in most cancers care is you may have remedy and you may have fertility.”
Costly remedy and combating for entry
“Traditionally, we within the sickle cell neighborhood have actually needed to give attention to survival over high quality of life. Now, because of advances in science and the resilience of the neighborhood, we live longer. Now, it isn’t sufficient to outlive. For lots of us, having an optimum high quality of life entails having youngsters.”
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Rosem Morton for NPR
“Traditionally, we within the sickle cell neighborhood have actually needed to give attention to survival over high quality of life. Now, because of advances in science and the resilience of the neighborhood, we live longer. Now, it isn’t sufficient to outlive. For lots of us, having an optimum high quality of life entails having youngsters.”
Rosem Morton for NPR
Within the U.S., medical insurance protection for fertility preservation and remedy just isn’t assured and varies from state to state. Solely eleven states have legal guidelines that mandate protection for fertility preservation for sufferers who endure therapies that would imperil their means to have organic youngsters – often known as iatrogenic therapies – like chemotherapy or radiation.
However even these legal guidelines do not at all times assist, says Dr. Irene Su, an OB-GYN on the College of California San Francisco, who researches fertility preservation insurance policies.
Su says these legal guidelines are often very obscure when it comes to who qualifies: “Should you give insurers room to interpret, it is potential that they are often very broad, or they are often very slim.”
Which means 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 faculty when his sickle cell illness issues ramped up.
“By 2016, that complete 12 months, I spent 60 % of my life within the hospital,” he says.
Not lengthy after, he married his faculty sweetheart. They needed to have youngsters, however have been unable to get pregnant. A health care provider then advised them their finest wager was to endure intrauterine insemination, a fertility remedy the place the highest-quality sperm is chosen and inserted instantly into the uterus.
Sanders’ spouse bought pregnant after 4 makes an attempt, however none have been lined by insurance coverage.
“It is so costly. You are speaking about hundreds of {dollars} every attempt,” Sanders says. “I imply, we needed to, after all, borrow cash. As a result of, you understand, on the similar time, I used to be going by means of college, opening a enterprise, and I used to be within the hospital, at all times. So it was extraordinarily robust.”
Like Woolford, Sanders enrolled in a medical trial for a bone marrow transplant, and it was successful.
He’s 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 lift consciousness of fertility points at medical conferences and amongst sufferers. A future aim for the group is to offer 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 grim private actuality that she is going to most likely by no means conceive a baby.
“It is actually arduous, as a result of I do not suppose lots of people understand that I am combating for one thing that I did not have entry to,” she says.
At this level, she stated, it is now not a medical justice battle. It is a reproductive justice one.
Reporting for this story was supported by the USC Annenberg Heart for Well being 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 Well being Information).
