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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Chadwick said his experience at Children's Hospital for the past 15 years led to his decision to work in the medical field. He's currently studying to be a medical assistant. "This experience of being here at the hospital, seeing the people that work here, actually guided me to do what I want to do," he said while lying in a hospital bed waiting for a treatment one day.

Currently, the only cure for sickle cell is a bone marrow transplant, which is not only risky and costly, but requires a bone marrow match and a willing donor. UCSF Benioff Children's Hospital Oakland does perform bone marrow transplants, and has cured 25 patients with sickle cell disease to date. But, it's mostly reserved for patients who have no other alternatives. Patients must undergo chemotherapy to destroy the old bone marrow, which severely weakens the body. And, in some cases, the treatment can be fatal if the patient's body doesn't accept the new marrow.

September is National Sickle Cell Awareness Month, a month in which the late Ron Dellums, who served as Oakland's mayor from 2007 to 2011, helped herald. In 1983, as a member of the U.S. House of Representatives representing the East Bay, Dellums co-sponsored a bill introduced by Julian Dixon, a member of the Congressional Black Caucus, designating this month as National Sickle Cell Awareness Month.

The future of sickle cell treatment — and cures — may be in gene therapy. Tentatively, there are promising clinical trials taking place at UCSF Benioff Children's Hospital Oakland. In addition, there is a new treatment that has not yet been tested but is being developed by Children's Hospital Oakland in collaboration with UC Berkeley. It is based on gene editing that would correct the mutation, taking one's own healthy stem cells from their own bone marrow. The trial is scheduled to begin in 2019 with a small group of patients. "What we'd be doing is actually correcting the mutation directly," said Mark Walters, interim director of research at UCSF Benioff Children's Hospital Oakland, who oversees operations at CHORI.

For decades, there was only one FDA-approved drug for sickle cell. But a year ago, hydroxyurea and L-glutamine were approved to help manage symptoms of sickle cell. Hydroxyurea is a chemotherapeutic drug that reduces pain crises and the need for blood transfusions. L-glutamine is based on naturally occurring glutamine, the building blocks of protein in the body, and has almost no side effects. A recent study published by Vichinsky and CHORI shows that L-glutamine decreased the number of pain episodes and hospitalizations in sickle cell patients.

But even with newly approved drugs — and a hope for a less risky cure in the future — access remains an issue. Seventy percent of people who could be on hydroxyurea aren't because doctors don't want to prescribe it, Quirolo said. And because treatments are costly and most patients are on Medi-Cal, insurance companies don't want to reimburse many of the drugs and procedures. With only two comprehensive sickle cell centers in the state, many patients continue to rely on emergency rooms for care.

There has been one bright spot, however: A new adult sickle cell treatment clinic opened in South Central Los Angeles last year. (About half of the state's sickle cell patients live in the greater Los Angeles area.)

Meanwhile, doctors, nurses, and researchers — many who have committed their entire careers to caring for patients with sickle cell — are now advocating for broader changes on the legislative and national level. Quirolo, who grew up in Oakland and retired from Children's Hospital a few years ago, helped author legislation that would fund more comprehensive sickle cell centers in the state. While this legislation has been tabled for now, its supporters hope that legislators and governmental agencies will pay more attention to the disease. They say that better, more comprehensive care for sickle cell patients will save millions of dollars in emergency room visits. California spent $338 million in 2014 alone for emergency room visits for sickle cell patients, according to the CDC.

In a small but significant victory, sickle cell patients have been exempt from new opioid legislation that restricts the amount of opioids that doctors can prescribe patients. Quirolo and others worked with legislators to make the exemption. Even though the law allows more pain medication to be given to sickle cell patients, it's still a different story in the ER when hospital staff are unaware of sickle cell symptoms. "You're treated like you're a drug abuser," Rhymes said.

Some patients themselves are trying to bring about awareness. Safia Abdul-Sabur, who immigrated from Jamaica as a child, experienced chronic high fevers, pain, and pneumonia-like symptoms.

She had hopes of becoming a doctor to help other sickle cell patients, but during her first year of college at UC Davis, where she was studying molecular cell biology, she got sick and missed a lot of her classes. As a result, she had to change her major. Today, she's managing the disease and is a preschool teacher in Berkeley.


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