Sickle Cell: The Last Health-Care Frontier for Black Lives 

While the genetic disease received widespread attention during the Civil Rights Movement, researchers and doctors say patients continue to suffer from a lack of adequate treatment.

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Treadwell of Children's Hospital Oakland said there's a direct correlation between these two facts. "The expectation decades ago was people wouldn't live beyond early adulthood, if not their teenage years," she said. "Ninety percent of children now are living into adulthood, and the adult medical world wasn't ready to receive all those patients."

Even within the Black community, sickle cell was misunderstood or just unheard of. The history of the sickle cell center at Children's Hospital isn't well-known, but it was born in part from the Civil Rights and Black Power movements, with a direct tie to the Black Panther Party. Oakland was the origin and center for activism around sickle cell.

Tolbert Small acted as a link between the Black Panther Party and sickle cell awareness. On a Sunday evening in a quiet home in the Oakland hills, Small took out a box of old newspapers, folders, black-and-white photographs, writings he's done, and speeches he's presented since the '60s.

Small explained how, in the late '60s, he became the primary physician for members of the Black Panther Party, and then became the medical director of the party's Sickle Cell Anemia Foundation in 1970. Now 76 years old, he's still a practicing doctor, at the Native American Health Center in Oakland.

Bobby Seale and Huey P. Newton founded the Black Panther Party while they were students at Merritt College in Oakland. (Coincidentally, the former site of Merritt College is now home to CHORI, the research facility of Children's Hospital.) The Black Panthers saw health-care as an integral part of Black liberation and strived to improve health-care for Black communities. Sickle cell screening and awareness became a focal point.

"Bobby [Seale] came out with the term 'Black genocide,'" Small said about how the founders of the Black Panther Party referred to sickle cell disease. Small worked with the Panthers from 1970 to 1974.

Small took out editions of The Black Panther, the official newspaper of the party, with cover stories about sickle cell. The Black Panthers opened community health clinics, including one in Berkeley that Small helped start, the George Jackson Free Clinic, which was one of the first to offer sickle cell screening.

"He was one of the rare doctors actively taking care of adult sickle cell patients," Vichinsky said about Small. "He remains a historical figure for sickle cell disease over the decades."

As the Black Panthers grew to 44 chapters and 14 free clinics across the country, they continued to advocate for sickle cell awareness. Each clinic screened for sickle cell, and some of the chapters without clinics did so as well. "They were the first wave, nationally, of sickle cell awareness. Given their resources, they did more than anybody," Vichinksy added.

"They were very popular at the time. It was kind of the heyday of sickle cell [awareness] in my mind," said Keith Quirolo, the former director of Pediatric Sickle Cell Program and Apheresis Program at UCSF Benioff Children's Hospital Oakland.

click to enlarge Working with the Black Panther Party, Dr. Tolbert Small helped spread awareness and treatment of sickle cell. - PHOTO BY DREW COSTLEY
  • Photo by Drew Costley
  • Working with the Black Panther Party, Dr. Tolbert Small helped spread awareness and treatment of sickle cell.

The grassroots approach within the community paid off: Small believes that the Panthers' high profile in mainstream media — their main image being Black folks carrying guns, not the social service programs such as free breakfast and free health-care — helped put pressure on Congress and President Richard Nixon to sign off on legislation to fund sickle cell centers nationwide.

In 1972, Nixon signed legislation to fund sickle cell research, in hopes of finding a cure, and to improve care for patients. An NIH grant funded 10 comprehensive sickle cell centers across the country, which lasted for several decades. One of these centers was at Children's Hospital Oakland. The Comprehensive Sickle Cell Disease Center opened at Children's Hospital Oakland in 1973.

But by 2005, the NIH discontinued funding for the 10 sickle cell comprehensive centers. For decades, while individual hospitals continued to care for children and some had specialized care for adults, the disease essentially was forgotten.

"Nixon wanted the Black vote," Quirolo said about why he believes Nixon approved funding for sickle cell. "The government looked at [the Black Panther Party] as terrorists. They started these sickle cell centers with a huge grant to take that away from the Panthers."

The Black Panther Party became public enemy number one in the eyes of CIA Director J. Edgar Hoover. COINTELPRO, the Counterintelligence Program of the FBI, infiltrated the Black Panther Party, wreaking havoc, distrust, violence, and more. By the late '70s, most chapters had become inactive.

But the legacy of the party continues today. Much of the research about sickle cell has taken place at CHORI. And the hospital's comprehensive center continues to treat patients using the results of the most current research, serving a vulnerable population that can't get specialized care elsewhere. Besides Children's Hospital in Oakland, there is only one other comprehensive treatment center for sickle cell in the state — at Children's Hospital in Los Angeles. There are other clinics and programs, such as in Fresno and at UC Davis, but they are not considered comprehensive centers.

Treyvonn Chadwick, 20, is a patient at Children's Hospital Oakland who undergoes monthly apheresis treatments — similar to a blood transfusion in which a patient receives new blood, but it also takes out the patient's blood at the same time. Children's Hospital Oakland is one of the few places in California that uses apheresis treatment and has trained staff to administer it — a program that Quirolo, along with a nurse, Alicia Garcia, started in 1995. While blood transfusions are more standard, and many sickle cell patients do undergo monthly transfusions, the apheresis treatment helps prevent strokes, treats an acute form of pneumonia, and can help alleviate severe pain — with the least amount of side effects, according to Bloom, an apheresis nurse.


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