For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house — the bathroom on the second floor.
“It was really hard to bathe in here, and I found myself not wanting to touch the walls,” she explained. The bathroom is where Brocks-Capla’s son Kareem Jones died in 2013 at age 36, from sickle cell disease.
It’s not just the loss of her son that upsets Brocks-Capla; she believes that if Jones had gotten the proper medical care, he might still be alive today.
Sickle cell disease is an inherited disorder that causes some red blood cells to bend into a crescent shape. The misshapen, inflexible cells clog the blood vessels, preventing blood from circulating oxygen properly, which can cause chronic pain, multi-organ failure and stroke.
About 100,000 people in the United States have sickle cell disease, and most of them are African-American.
Patients and experts alike say it’s no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. By 2005, life expectancy had dipped to 38 for men and 42 for women.
Sickle cell disease is “a microcosm of how issues of race, ethnicity and identity come into conflict with issues of health care,” said Keith Wailoo, a professor at Princeton University who writes about the history of the disease.
It is also an example of the broader discrimination experienced by African-Americans in the medical system. Nearly a third report that they have experienced discrimination when going to the doctor, according to a poll by NPR, Robert Wood Johnson Foundation and Harvard T.H. Chan School of Public Health.
“One of the national crises in health care is the care for adult sickle cell,” said leading researcher and physician Dr. Elliott Vichinsky, who started the sickle cell center at UCSF Benioff Children’s Hospital Oakland in 1978. “This group of people can live much longer with the management we have, and they’re dying because we don’t have access to care.”
Indeed, with the proper care, Vichinsky’s center and the handful of other specialty clinics like it across the country have been able to increase life expectancy for sickle cell patients well into their 60s.
Vichinsky’s patient Derek Perkins, 45, knows he has already beaten the odds. He sits in an exam room decorated with cartoon characters at Children’s Hospital Oakland, but this is the adult sickle cell clinic. He’s been Vichinsky’s patient since childhood.
“Without the sickle cell clinic here in Oakland, I don’t know what I would do. I don’t know anywhere else I could go,” Perkins said.
When Perkins was 27, he once ended up at a different hospital where doctors misdiagnosed his crisis. He went into a coma and was near death before his mother insisted he be transferred.
“Dr. Vichinsky was able to get me here to Children’s Hospital, and he found out what was wrong and within 18 hours — all I needed was an emergency blood transfusion and I was awake,” Perkins recalls.
Kareem Jones lived just across the bay from Perkins, but he had a profoundly different experience.
Jones’ mother, Brocks-Capla, said her son received excellent medical care as a child, but once he turned 18 and aged out of his pediatric program, it felt like falling off a cliff. Jones was sent to a clinic at San Francisco General Hospital, but it was open only for a half-day, one day each week. If he was sick any other day, he had two options: leave a voicemail for a clinic nurse or go to the emergency room. “That’s not comprehensive care — that’s not consistent care for a disease of this type,” said Brocks-Capla.
Brocks-Capla is a retired supervisor at a worker’s compensation firm. She knew how to navigate the health care system, but she couldn’t get her son the care he needed. Like most sickle cell patients, Jones had frequent pain crises. Usually he ended up in the emergency room where, Brocks-Capla said, the doctors didn’t seem to know much about sickle cell disease.
When she tried to explain her son’s pain to the doctors and nurses, she recalled, “they say have a seat. ‘He can’t have a seat! Can’t you see him?’”
Studies have found that sickle cell patients have to wait up to 50 percent longer for help in the emergency department than other pain patients. The opioid crisis has made things even worse, Vichinsky added, as patients in terrible pain are likely to be seen as drug seekers with addiction problems rather than patients in need.