Clinic for people with sickle cell disease opens in South LA

Red blood cells are normally shaped like doughnuts, but sickle cells (purple) are flattened and clump together.
Red blood cells are normally shaped like doughnuts, but sickle cells (purple) are flattened and clump together.

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Beginning Thursday, adults in Los Angeles County with sickle cell disease can get comprehensive medical care at a new public clinic at the Martin Luther King, Jr. Outpatient Center in south L.A.

This will be the only comprehensive clinic in the county serving people with the inherited blood disorder, besides one serving Kaiser Permanente members, according to Dr. Susan Claster, the county facility's hematologist.

The new clinic, which can treat up to 300 patients, will offer primary care, specialty hematology, mental health services and comprehensive pain management, including alternative therapies like yoga and acupuncture.

There is a great need for such specialized treatment in L.A., says Claster, who notes that about half of California's 3,000 adults with sickle cell disease live in L.A. County.

"We have great care for the kids; there are great programs in L.A. and all over the country," she says. "But once the kids hit adulthood, they have no place to go and then they die."

The clinic is run by the L.A. County Department of Health Services and will be available to people with Medi-Cal, as well as the uninsured. 

Nationwide, the CDC estimates about 100,000 Americans have sickle cell disease; it mostly affects African-Americans, occurring in one out of every 365 black births.

Instead of having healthy, round red blood cells, people with sickle cell disease have red blood cells that are hard, sticky and C-shaped, the CDC says. When passing through small blood vessels, the sickle-shaped cells can get stuck and clog blood flow, preventing blood from reaching nearby tissue.

The lack of tissue oxygen can cause people to experience sudden attacks of excruciating pain, according to NIH’s National Heart, Lung and Blood Institute.

People often seek treatment for these pain episodes at the hospital, but they report being labeled as "drug seekers" there, says Dr. Ellen Rothman, the chief medical officer for Martin Luther King, Jr. Outpatient Center.

The problem is sickle cell patients, who can look outwardly healthy, often know and request drug regimens that have worked for them in the past, Rothman says. Doctors, she says, have no easy way to identify someone who has the disease.

"For an ER physician who does not know this patient, it is hard to distinguish somebody who truly has a drug addiction from somebody who has sickle cell," she says.

At the county clinic, patients and providers will work together to create a pain management plan, which will include strategies to deal with pain crises, Rothman says. It will also include a patient's diagnosis, recent lab results and medication list.

"A patient can actually carry [the plan] with them and so, if they present to an emergency department in crisis, it's just another piece of information that they can quickly transmit to another health care professional that will hopefully be meaningful," she says.

Providers will also strive to get more patients onto a drug, called hydroxyurea, which protects against sickling, says Claster, the hematologist.

"The patients who take it successfully end up with far fewer pain episodes, far fewer admissions and they live an average of nine years longer," she says. "You'd think everyone would take it, but that's not the case."

Sickle cell patient Lance Jones, 28, is excited about the new clinic. He says since he turned 21, he's seen three different physicians; he now has both a primary care doctor and a hematologist, but he says they don't communicate with each other and often give him conflicting advice.

"It's like this tug-of-war between the hematologist and primary care," says Jones, 28. "At the clinic, they're under one roof and they're going to correlate together, so when you have a cold or you need a flu shot, you just go to the same place as you would to test your blood and to have transfusions."