Over more than two years, Gina Kolata and John Eligon followed the lives of people with sickle cell, an inherited disease that afflicts mostly Black people and causes intense pain and often strokes and premature death. In profiles of women and children with the disease, they documented failures of the fragmented American health care system, marred by racial inequities, to provide even basic care, or to hasten medical research that could speed approval of gene therapies to cure the blood disorder. Eligon marshaled evidence that the plight of people in Nigeria – the global epicenter of the disease – is even more dire, with half of those who have it dying before they reach age 5, lacking for medicines that cost 12 cents a day.
Kolata has reported on Helen Obando’s case since 2019, when Kolata was at her bedside as a bag of stem cells from Helen’s bone marrow, modified by gene therapy, dripped into her chest. Helen became the first American teenager to be freed of sickle cell with such a treatment. She has become an outgoing teenager with dreams of being a trauma nurse. But she’s one of only dozens of clinical trial participants to get treated. Kolata reported that Dr. Francis Collins, who recently retired as head of the National Institutes of Health, had lobbied federal health officials though the Trump and Biden administrations to pay for experimental sickle cell therapies in clinical trials. His efforts have not yet led to action.
In the course of reporting, Kolata discovered that as many as half of children with sickle cell do not get a screening test proven decades earlier to prevent strokes, a common complication of the disease. She recounted the experiences of the bubbly Crawford sisters in Texas. Both of them had preventable strokes. But Kyra’s, at ages 10 and 12, were particularly severe, leaving her with severe learning disabilities. Kyra’s mother, Dana Jones, recently learned that the ultrasound test that could have saved her daughters from trauma was offered a 45-minute drive from their home.
Eligon began delving into the treatment of lifelong pain in adult sickle cell patients, and more than two years ago he began spending time with Lisa Craig, a 48-year-old wife and mother. He followed her to doctor’s appointments and hospital visits as she sought relief. He chronicled her struggles to get effective drugs and the mental anguish she experienced when ER doctors saw her – a Black woman – as a drug-seeking addict. He also explored the dearth of treatments to control chronic pain and one doctor’s efforts to help her live with it.
Most parents are shocked to learn their baby has sickle cell disease. But a blood test can warn those who both carry the sickle cell trait that their children have a one in four chance of being born with the disease. The U.S. Preventive Services Task Force, which advises the federal government on screening tests to prevent disease, has never considered sickle cell. And the blood tests are typically not done, despite guidelines from the American College of Obstetricians and Gynecologists. Kolata profiled Lametra Scott, whose son Rickey, 9, has the disease. Scott, a pharmacist, has become what her son’s doctor called “an army of one,” raising awareness about the risks of the disease – and the choices that face couples.
In Nigeria, Eligon wrote about one mother’s unceasing efforts to save Sadiya, 11, from death. Sickle cell had already claimed three of Mariya Haruna’s daughters in childhood and she was determined to save Sadiya. In his wrenching portrait of one family’s struggles, Eligon explained that in Nigeria – where an estimated 150,000 children a year are born with the disease – simple blood tests to detect it at birth are rare, as is the most basic care. But he also described hopeful developments: A pediatrician from Vanderbilt University has led research that showed the risk of strokes can be reduced by giving children an old, inexpensive chemotherapy drug – research that also brought in 18 new ultrasound machines that can detect children at high risk for strokes. In the midst of the pandemic, a Nigerian journalist, Ismael Alfa, returned to Kano late this year to check on the family.