Why are Californians with sickle cell falling ‘into a black hole’?

During the Civil Rights and Black Power movements, sickle cell anemia became a health care cause to champion. The Black Panther Party, which started in Oakland, set up one of the first screening programs. Now, more than 60 years later, the disease that affects 100,000 people in the country, mostly African Americans, has nearly fallen off the radar.

The Centers for Disease Control previously funded 10 “centers of excellence” in the country, but that funding was discontinued in the early 2000s. Oakland also has one of the longest-running comprehensive clinics that treats sickle cell patients. It is located at the UCSF Benioff Children’s Hospital of Oakland, and treats both children and adults (about half the patients there are adults). That’s because there are no other comprehensive treatment centers in the area, and the doctors at the hospital have followed many of their patients since they were children.

Families have moved cross-country to be near the hospital. While the care for children has improved since the 1970s, gains in care for adults have not kept pace. In California, the age of death for adults with sickle cell is lower than any other state in the country. “Children get the best care possible, no doubt,” said Mary Brown, president and CEO of the Sickle Disease Foundation of California. “It’s when that child becomes an adult — that’s when they fall into a black hole.”

Adults have also faced discrimination and ignorance at emergency rooms, doctors and advocates say. With the heightened opioid crisis, sickle cell patients who need pain medication are often treated as if they are drug addicts. There is a general lack of education on the disease, including among health care providers. One doctor described a visit in which a patient was asked, “How long have you had this disease?” The fact that someone working in the ER did not know that sickle cell is a genetic disease one is born with is demoralizing for patients who continue to battle both the disease and a sometimes clueless health care system.

Some doctors say the disease also suffers from a lack of public research funding, while other diseases that affect fewer, mostly white Americans receive more money. More and more private companies are funding research on sickle cell, rather than government institutions. Drug companies see an opportunity to make money in this niche market.

While the disease is no longer in the public spotlight, a dedicated group of doctors, researchers, and patients are getting together to try and make the changes necessary in California so that patients receive better care. This includes helping patients navigate new healthcare laws, better statewide advocacy, and sharing new research and best practices for long-term care for adult patients.

And, it seems that hope is just within grasp. The Children’s Hospital of Oakland is one of a few places in the country with an upcoming clinical trial for gene therapy as a potential cure for sickle cell anemia.

My project, supported by a grant from the Center for Health Journalism’s inaugural Impact Fund, will include an in-depth story for the East Bay Express that explores the lives of patients, doctors and advocates, and researchers who are hopeful about finding a cure and better care for patients.

[Cropped photo by scooterdmu via Flickr.]