Surgeries and transplants involve an element of risk that the patient is made aware of before agreeing to the procedure. However, despite all efforts by the doctors, things do not go as smoothly as planned. One such case was Teonna Woolford – a patient who became infertile following a haploidentical bone marrow transplant and was diagnosed with sickle cell disease.
As per NPR, since the transplant only required a half-matched donor, it was considered as a therapeutic option after 19 years of being hospitalized, experiencing liver failure, and having hip replacement surgery (often a family member). Woolford, now 30, was first concerned that the chemotherapy-based treatment might prevent her from having the six children she had always wanted.
Egg freezing was previously exclusively offered to cancer patients due to its prohibitive cost. Woolford was just 19 years old when he opted to have a transplant, a potentially life-threatening procedure.
Woolford, a Maryland resident, commented, “I’ve had all these 11 years to think about it, and now realize that it wasn’t a fair trade off for anyone.” Having children and discovering a cure should not be mutually incompatible; individuals should not be forced to choose between the two. Woolford’s body rejected the bone marrow transplant, rendering it ineffective. Her white blood cell production ceased, and it took six years for her platelet count to return to normal.
Woolford’s hematologist, Lydia Pecker, MD, director of the Johns Hopkins Sickle Cell Center for Adults, proposed egg freezing two years ago. She couldn’t afford the almost $20,000 price tag, which was the same as it had been eleven years before.
The purpose of the new non-profit Sickle Cell Reproductive Health Education Directive is to change policy and educate and assist all patients, regardless of gender, on reproductive health in SCD (SC RED). Initially, the organization concentrated on raising finances and offering grants to help women with SCD with egg preservation.
Puberty in teenagers with SCD can be delayed by one to two years, and ovarian failure is a typical side effect for women like Woolford who get bone marrow transplantation. According to two different studies, around 22% of men have erectile dysfunction, and 91% of patients have sperm abnormalities.
For more than a century, there has been a medical literature record of sickle cell disease. Patients with sickle cell disease are disproportionately Black in the United States, leading to the condition being stigmatized as a “Black sickness.” This has left a legacy of systematic racism that continues to have an impact on persons with sickle cell disease today.
Dr. Lydia Pecker, a Johns Hopkins associate professor of medicine and a specialist in sickle cell disease, discovered that African Americans with the disorder had lower levels of social capital and fewer financial resources than patients from other groups. Cancer patients, according to Pecker, have significantly wider access to reproductive therapy options than sickle cell disease patients.
“A number of foundations, large and small,” according to Pecker, “provide assistance and pay for fertility preservation for persons with cancer.” These organizations collaborate with fertility clinics to obtain price reductions for low-income patients. Children with cancer should be referred for fertility preservation before commencing treatment, according to medical community standards.
“But we don’t really have standards like that yet for patients with sickle cell illness,” Pecker adds, revealing that chemotherapy is given to children with sickle cell disease who are having a transplant. She goes on to say that there isn’t a perfect match here since chemotherapy medications for sickle cell disease aren’t the same as chemotherapy treatments for pediatric cancer.
Fertility preservation, on the other hand, is critical if there is even a distant risk that treatment will compromise fertility. If clinical criteria are not generally acknowledged, sickle cell patients may not be sent to the appropriate care.