Gideon Ogungbemi says the pain caused by sickle cell disease is indescribable.
"I can't put it into words but I know it's something terrible that I would never want any of my friends to experience," says Ogungbemi, 28.
The pain often drove Ogungbemi to the emergency room, where he says doctors gave him morphine or Dilaudid.
Today, he's one of about 30 patients now getting specialized care at the Adult Sickle Cell Clinic at the Martin Luther King Jr. Outpatient Center in South Los Angeles. Believed to be the first of its kind in the country, the clinic brings primary and specialty care providers under one roof to help people with sickle cell live a longer and more comfortable life with the disease.
The clinic meets a real need: Adult sickle cell patients have traditionally had trouble getting care.
"They all have war stories about going to the ER," says Anthony Wells, a patient navigator at the clinic, which opened about a year ago. He says the clinic has provided patients with preventive care, education and support and now they consider the emergency room "as their last resort, rather than their first resort."
Challenges getting care
Sickle cell is a genetic disorder of the red blood cells. Instead of having healthy, round red blood cells, people with the disease have cells curved like a crescent moon. The cells get stuck in the small blood vessels, slowly starving the body of oxygen and causing intense pain episodes. It can lead to organ failure and premature death.
But a lot of doctors don't understand sickle cell or how to treat it effectively, experts say. There are only a handful of hematologists specializing in the disease statewide.
"I've seen care going from, 'I'll give you 800 [milligrams] of Motrin' to zonking them with so much Dilaudid that they don't wake up for two days," says Charlotte Dixon Burke, a nurse educator at the clinic.
Some experts say race is another barrier to care. Most of the approximately 100,000 Americans with sickle cell disease are black. Research has shown that in the emergency department, sickle cell patients wait longer to get painkillers than other patients.
"It's unfortunate, but sometimes people of color seem to have much more of a challenge getting what they need to have to get them out of pain," says Mary Brown, president and CEO of the Sickle Cell Disease Foundation of California.
And amidst the country's opioid crisis, Brown says sickle cell patients are often stigmatized as drug-seekers.
"The challenge for us is to educate those providers that see them in the emergency room … that people coming in with sickle cell disease are looking for care, they're not looking to feed a drug habit," she says.
"Everything is positive around me"
The sickle cell clinic is trying to change all of that with its team approach.
There are about 1,500 adult sickle cell patients in Los Angeles County, and many of them live near the MLK Outpatient Center, says Dr. Ellen Rothman, the center's medical director.
The clinic primarily serves patients on Medi-Cal. Rothman says many of them used to make sporadic visits to the emergency room, but lacked primary care services.
"As a sickle cell patient, you typically don't have a [working] spleen, so having a flu shot, a pneumococcal shot, and a meningococcal shot is so critical and none of our patients had that," Rothman says.
At the clinic, a nurse practitioner provides vaccinations and other forms of primary care.
Nurse educator Burke teaches them to control their pain at home, telling them, "let's try warm baths, let's try some heat, let's increase your water, let's take some Motrin or Alleve, whatever works for you. And if those things don't work for you, then you graduate to narcotics."
And hematologist Dr. Susan Claster makes sure patients are getting the right medications.
Sickle cell used to be considered a pediatric disease, because patients didn't live into adulthood. But now people can live decades longer if they're taking a drug called hydroxyurea. It's been around for about 20 years and it inhibits sickling of the red blood cells.
Hematologist Claster says eight of the clinic's first 23 patients weren't on the drug. Since then, she says, "we've put a lot of people on Hydroxyurea and they all are feeling better."
Gideon Ogungbemi says he hesitated going on the drug, but he's glad Claster convinced him to try it.
"I just feel like the medication is working, everything is positive around me, and I'm seeing the changes in myself and my body," he says.
"A potentially powerful model"
Along with providing medical care, the clinic is also helping sickle cell patients reconnect with the health care system.
"Because they've been misunderstood for so long, now they don't trust us," says nurse educator Burke. "We're re-establishing trust with these people."
Patients have time to ask questions about their disease and get answers, says Wells, the patient navigator. As a result, they're starting to feel more cared for, she adds.
"Some of them have expressed just being happy to be here ... in a place where they feel like people understand what they're going through," says Wells.
MLK Outpatient Center Medical Director Rothman hopes to increase the number of patients the clinic treats from the 30 it currently sees to 200 by next year. She says the clinic's team approach to care is an important innovation.
"I think we're starting to see the evidence that this is a potentially powerful model that could be expanded not only to our sickle cell patients, but to other adults with complex conditions," she says.
Rothman envisions a future in which specialized clinics treat people with diabetes, dementia and congestive heart failure.