Until Teonna Woolford was confronted with her own infertility after a haploidentical bone marrow transplant (half match)she hadn’t given much thought to the lack of awareness and resources for sexual health in the sickle cell disease (SCD) community.
Hospital stays, liver failure and hip replacement were already part of his 19 years of life when the transplant, which only requires a half-match donor (usually a family member), was considered a potential cure. But Woolford, now 30, realized at the time that she might have to give up her lifelong dream of having six children because of the chemotherapy used in the procedure.
She considered freezing her eggs, but that option was too expensive and any grants available to cover her costs were for women with cancer. Going forward with the transplant is a tough decision to make at 19, but Woolford felt the risk was worth it.
“I’ve had all of those 11 years to reflect, and I realize now that it wasn’t a fair compromise for anyone,” said Woolford, who lives in Maryland. “No one should have to do either, like cure or fertility; it should be a remedy and fertility.”
Woolford’s body rejected the bone marrow transplant. The production of white blood cells in his system stopped and it took him six years to fully recover his platelet count.
About two years ago, his hematologist, Lydia Pecker, MD, director of the Johns Hopkins Sickle Cell Center for Adults, told Woolford that her fertility window was closing and that she should consider freezing her eggs. The cost was still around $20,000 and, as it was 11 years earlier, there were no resources to help pay it.
Raising money and distributing grants to help women with sickle cell disease freeze their eggs sparked an idea that would become the Guideline on Sickle Cell Reproductive Health Education (SC RED), a new non-profit organization whose mission is to change policies and educate and support all patients, regardless of gender, about reproductive health in SCD.
One to two years puberty delay has been reported in teenage girls with sickle cell disease, and for women like Woolford undergoing bone marrow transplants, a common side effect is ovarian failure. In men, sperm abnormalities were present in 91% of patients in a studyand about 22% of men in another study had erectile dysfunction.
Direction SC RED
SC RED was co-founded by Woolford, its CEO; Kim Smith-Whitley, MD, executive vice president and head of research and development at Global Blood Therapeutics (GBT), a biotechnology company specializing in the development of treatments for sickle cell disease; and Pecker, director of the Hopkins SCD Center Young Adult Clinic. Smith-Whitley is now SC RED’s chief medical officer and Pecker is its vice chief medical officer.
The organization received 501(c)(3) status in April 2021. In its first year of operation, SC RED secured approximately $60,000 in funding, according to Woolford. An additional $4,000 came from Woolford’s personal fundraising, she estimated. All roles within the foundation are voluntary, although Woolford hopes to find a way to pay people as SC RED grows.
Woolford initially focused on getting grants for egg freezing, but Pecker encouraged her to look beyond the cost of the procedure and see it as a matter of social and reproductive justice. In that initial conversation, Pecker argued that more advocacy was needed if more comprehensive change was to be made.
Smith-Whitley informed Woolford of other issues faced by the SCD community, such as delayed puberty and lack of medical protocols for pregnant women with SCD.
Ahmar Zaidi, MD, founding board member of SC RED, also told him about the challenges men face, such as priapism – a prolonged and painful erection of the penis that can lead to hospitalization. This happens because sickle cells cause blood to become trapped in the penis and unable to flow out.
“When I started paying attention to social media and seeing what guys were saying, and guys’ girlfriends and wives were saying, then I realized we needed to include guys as well,” said Woolford, who before starting SC RED was an advocate for SCD patients, speaking to pharmaceutical companies and speaking at speaking engagements.
Reproductive health is a relatively new priority for patients with SCD, Woolford said, because with the advent of better treatment, they are living longer. A 2019 study projected that the life expectancy was 54 years for both male and female patients, while a 1994 study found that the median age at death was 42 for men and 48 for women. Even so, she said, some people outside the SCD community question the importance of fertility because they believe patients are too sick or too poor to have children.
“There’s been this lack of recognition, that we’re a whole people,” Woolford said. “So now we’re in a time where we’re trying to honor our integrity and consider everything, including reproductive health.”
Others take note of Woolford’s message. At last year’s annual national convention of the Sickle Cell Disease Association of America, Woolford and Smith-Whitley were asked to give the Charles F. Whitten, MD, Memorial Lecture, focusing on sexual and reproductive health in the SCD. She was the first patient in the history of the conference to give this honorary lecture.
Policy changes in sight
Woolford also hopes her advocacy efforts will change federal and state policies to allow greater access to reproductive health services for SCD patients, the majority of whom use Medicaid. According to a Centers for Disease Control and Prevention report, 66% of people with SCD were insured by Medicaid for at least one month from 2014 to 2016 in California, and 56% of people were insured in Georgia. In 2012, a total of more than 55,000 people identified as having SCD were on Medicaid.
She and other hematology organizations and associations meet in February with Chiquita Brooks-LaSure, administrator of the Center for Medicare and Medicaid Services and the first black woman to hold this position. Representing SC RED, Woolford lobbied for coverage of services such as egg freezing and in vitro fertilization.
Also that month, the EveryLife Foundation for Rare Diseases Congressional Rare Disease Caucus briefing, which focused on the fast-track approval pathway, included a speech of Woolford. In addition to sharing her personal experience with SCD, Woolford said she was already hypersensitive to hydroxyurea due to the chemotherapy she received for her transplant procedure.
She is also allergic to Oxbryta (voxelotor), an oral therapy developed by GBT that increases hemoglobin’s affinity for oxygen, and Adakveo (crizanlizumab), a Novartis infusion therapy to prevent vessel occlusion. blood. So, she’s particularly optimistic about new therapies coming into the drug development pipeline.
For the future, Woolford plans to increase his speaking engagements and travels. She will be in Las Vegas for the Health 2.0 conference in April, which bbrings together industry, physicians and patients to discuss advances in healthcare. She also plans to attend the 4th World Congress on Sickle Cell Disease in June in Paris, France, and speaking at the Global Alliance of SCD Organizations First International Conference in Accra, Ghana.
Efforts to close this gap in healthcare for SCD will also extend to other conditions and disorders, Woolford said. SC RED’s mission is focused on sickle cell disease, but it plans to partner with other health organizations. She is currently in talks with Livestrong and March of Dimes.
“Sickle cell disease is like the poster child for inequality and disparity,” Woolford said. “[If] we can change some of the ways things are done in sickle cell disease…it really is a win for everyone.
Leading SC RED has not been an easy task for Woolford, who has no experience in the nonprofit world and, despite her own infertility diagnosis, has to discuss the subject and interact with pregnant women.
“There are days when I don’t even want to get out of bed, but I have to,” Woolford said.
Woolford’s personal journey has been difficult and she has gone beyond the dream of having children of her own, but she also sees all the good that comes from the bad.
“These beautiful and meaningful things can come out of so much darkness,” Woolford said. “Because if I hadn’t had this transplant and had my own diagnosis of infertility, this organization wouldn’t exist.”