One of the main reasons care for SCD adults isn’t as good as pediatric care is because there simply aren’t enough hematologists specializing in sickle cell disease treatment for adults. Dr. Wally Smith, professor of internal medicine and scientific director of the Virginia Commonwealth University Center on Health Disparities, estimates there are as few as 300 adult SCD specialists across the country.
Doctors who could specialize in sickle cell disease are those who complete a fellowship in hematology and oncology after their internal medicine residency. When it comes to choosing a field after the fellowship, oncology is often the far more attractive career option.
“The tremendous infrastructure and financial support to incentivize people to pursue research or care in oncology” does not exist for SCD, says Dr. Michael DeBaun, director of Vanderbilt-Meharry Center for Excellence in Sickle Cell Disease. “So there’s not this allure, no constant interaction, where medical students, then residents, then fellows are introduced to the field.”
And while cancer care is financially lucrative, many SCD sufferers are on Medicaid and their treatment is not fully reimbursable.
In addition to paying less, Dr. Smith says that the limited treatment options in SCD can make it less intellectually rewarding than treating cancer, where constant developments in drugs and therapies make the field dynamic.
Treating SCD often involves giving high dosages of opiates to relieve the excruciating pain patients can experience, which have a diminishing effect the more they are used.
“That lack of supply of willing and trained and available adult practitioners — that is problem No. 1,” says Smith. “Even if they are trained, they may not be willing or may not want to take care of these patients. They don’t want to be in the business of just giving painkillers; they don’t want to be a dope dealer.”
However, pharmaceutical companies have begun to take some interest in SCD. A couple of recently developed drugs that might help improve patients’ lives and also make the field more interesting to specialists are currently in FDA trial stages.
“There’s no simple solution, no silver bullet for this; you can’t change the number of sub-specialties in a quick turnaround,” says Dr. W. Keith Hoots, director of the Division of Blood Diseases and Resources at the National Heart, Lung, and Blood Institute (NHLBI), part of the NIH.
It will require, he explains, “a concerted effort across training care systems in the U.S. as well as strategic changes in things like reimbursement so that doctors who go into it will get compensated.”
According to SCD activist Friend, health care professionals who have little knowledge or experience with the disease are often prejudiced. “Once you walk into the ER and start talking with the doctors, they judge you by what they see, and because I don’t look like a sick person, they think you can’t be in as much pain as you say. But when you have lived in pain for as long as you can remember, you can deal with it to a certain extent,” she says. “They think you are a drug seeker because you know 4 milligrams of a strong painkiller won’t cut it for you.”
Furthermore, Friend adds, “it’s definitely race-related, and it’s worse for African-American men; they are really stigmatized and made to suffer, and to doubt their own pain.”