Meeting to Discuss Needs of "Lost Generation" of Sickle Cell Patients
The nation’s first-ever meeting to discuss the need for comprehensive care of adult sickle cell anemia patients will be held in Cincinnati April 7–8.
The National Adult Sickle Cell Providers Symposium, which will be attended by about 300 scientists and care providers from around the country, is sponsored by UC and the Sickle Cell Adult Provider Network.
Sickle cell disease, an inherited blood disorder, affects about 72,000 Americans and one in 500 African Americans. It is characterized by episodes of pain, chronic anemia and severe infections that usually begin in early childhood. As yet there is no cure.
For about 35 years, symposium organizers say, the emphasis of sickle cell care has been on children, through federally funded Pediatric Comprehensive Sickle Cell Care Centers. The centers have contributed to longevity and improved the lives of thousands of children with sickle cell disease.
These children, however, are now aged 30 to 40 and older, says Zahida Yasin, MD, director of the Adult Sickle Cell Program at UC, and there are few adult care centers to treat them.
“These patients have become a ‘lost generation,’” says Dr. Yasin. “At this time in their lives they not only face the continuing battle with sickle cell disease, but also the additional health issues of middle age, such as heart disease, diabetes and high blood pressure,” she says.
“Their problems are not only very prevalent, but also much more severe than in non-sickle patients,” says Dr. Yasin, who is program director for the symposium. “Depression and other psychological conditions associated with chronic illness and lack of support systems are rampant.”
Compounding the problem is the fact that many adult patients are poor, without families and often intermittently homeless. They also frequently have had a lifelong need for pain-killing drugs, which makes them susceptible to predators on the street, Dr. Yasin says.
“Today we don’t have the resources to provide comprehensive care for the majority of adult patients with sickle cell disease in the United States,” says Dr. Yasin. “We’re hoping this conference will go at least part of the way to increasing awareness of the problem.”
The April 7 sessions will be held at the National Underground Railroad Museum Freedom Center in downtown Cincinnati. The April 8 program will be at the Northern Kentucky Convention Center.