Dr. Roland B. Scott, a prominent Howard University researcher, is worried that funding for sickle cell research will suffer the same fate as the 1960s programs for the poor.
Director of the Center for Sickle Cell Disease at Howard, Scott points to recent cutbacks in federal funding and a phase-out of six national sickle cell centers as the first signs that support for sickle cell research has begun to wane.
"Interest in sickle cell, like other major diseases, is like the latest hairstyles, fashions and dances -- it goes in cycles," Scott said.
Because the disease primarily affects black people, he added, it is becoming difficult to marshal long-term financial support from whites for continued research.
"The disease is so rare in whites," Scott said, "that when a case is found, it is written up in a medical journal."
In addition, many blacks who participated in fund-raising efforts when sickle cell diseases first became a "popular" issue, have lost interest, Scott said. They have failed to keep pressure on Congress and local officials to ensure research will continue.
He discussed his concern in a recent report in the Journal of the National Medical Association.
"The victims of this disease, the black population in general, and the researchers and investigators who seek ways to bring this disease under control need reassurance from the current national administration that the sickle cell program will not be permitted to die a slow death from financial attrition, attenuation of interest, and skillful neglect leading to the phasing-out of another 'minority project', "Scott wrote.
His concern about declining interest in sickle cell is shared by the Community Advisory Council for the Center for Sickle Cell Disease at Howard University. The council has drafted a letter to the National Black Caucus, urging its members to renew their support for the genetic disease that creates abnormal sickle-shaped red blood cells.
Scott and the advisory council are trying to restore support for sickle-cell research among both blacks and whites.
One of the reasons, according to Scott, for seeking broad support is to offset the possibility that sickle cell might lose its fair share of research funds when competing against genetic health problems affecting the majority population.
Although Howard University had been doing research on the disease since the 1940s, most doctors were unaware of the blood disorder until 1971, Scott said.
It was then that former President Richard Nixon proposed a sickle cell research and treatment program to Congress. Scott said Nixon used the program to get minority support for his reelection.
Consequently, close to $20 million has been appropriated annually by Congress for the Comprehensive Sickle Cell Program. Scott said across-the-board federal budget cuts have recently closed centers and reduced services.
Both blacks and whites confuse the genetic sickle cell trait with the often painful and debilitating disease, Scott said. Those who have the trait are only carriers; the disease occurs only when two carriers have children and the infant inherits abnormal genes from both parents.
The Center for Sickle Cell Disease at Howard screens expectant parents so they will know beforehand whether their child might inherit the disease. The center also screens children to determine if they carry the trait or the disease. Scott said there are several varieties of the disease, and some are difficult to detect. Scott estimates that more than 50,000 blacks in the United States have the disease.
The Howard Center will hold a two-day seminar on sickle cell in children at the Washington Hilton Hotel next Monday and Tuesday. Approximately 200 doctors, medical students, nurses, social workers, teachers and health practitioners are experted to attend.