When she was three years old, Angela Bates was diagnosed with sickle cell disease, an affliction that has caused her physical pain and emotional trauma. But when the 32-year-old Tennessee native moved to North Carolina in 1994, she found the Duke-University of North Carolina Comprehensive Sickle Cell Center, a discovery which helped her become virtually pain-free.
"This center is just a God's gift for me," she said.
But this gift came close to slipping away in recent months. In late March, the loss of funding from the National Institutes of Health sent the center's officials scrambling for money to support patient care. Duke pledged $350,000 to prop up its portion of the center temporarily, but recent actions by the state government have spawned hope that a permanent solution may soon replace this quick fix.
As state lawmakers begin considering whether and to what extent they want to fund the state's comprehensive sickle cell clinics, officials from the Duke-UNC center have begun lobbying for government aid.
Sickle cell is a genetic disease in which red blood cells are not the typical, round shape. The contortion of the afflicted blood cells prevents them from flowing easily through small vessels. About 4,500 people statewide-mostly of African descent-suffer from the disease.
The chance for state funding first surfaced when Governor Jim Hunt included $1.2 million for the state's comprehensive clinics in his 1999 budget.
"He wanted to ensure that we had continuation of the same level of care," said Glenda Purdie Harris, program manager at the North Carolina Sickle Cell Center Program in Raleigh.
The governor's budget, however, is only one step in the funding process. The state Senate will likely propose its own budget in the next two weeks, after which the two drafts will go to the House of Representatives, which proposes another budget. But when crafting their spending plans, legislators will have $528 million less to spend than Hunt did. The difference stems from a May 8 N.C. Supreme Court decision which ordered the state to repay citizens for a previously charged illegal tax on federal and state retirement benefits.
Harris said she remains hopeful that the legislature will fund the centers. "We are confident that all involved will see the gravity of the situation and the appropriate support will be given to this medical necessity." she said.
In discussions with members of the General Assembly last week, Dr. Marilyn Telen, director of the Duke sickle cell clinic and professor of hematology, Dr. Eugene Orringer, professor of internal medicine at UNC and director of that hospital's comprehensive sickle cell program and several others lobbied for the center.
"The program there at Duke is certainly worthy of funding," said Rep. Lanier Cansler, R-Buncombe and co-chair of the House Appropriations subcommittee on health and human services.
The funding crisis began last September when NIH officials chose to fund other centers rather than Duke's and became a harsh reality March 31 when NIH support expired. Changes in the application process may have hurt the Duke-UNC center's chances at renewed NIH money, Orringer said. The decision was made solely by reviewing the written application instead of through site visits, as had previously been done. The complexity of the multi-institutional Duke-UNC Sickle Cell Center could not be adequately represented by the proposal, he said.
"A lot of us felt that because of the change in the review process, our application really suffered a great deal," he said.
The University's $350,000 grant has maintained treatment levels at Duke thus far. This funding, announced April 29, covers the adult and pediatric clinics for about one year. Dr. Wendell Rosse, professor of hematology and medical oncology and director of the patient clinic, said cutbacks are a "distinct possibility" if more funds do not materialize.
UNC's clinical program has suffered even more, officials said. "We're all pretty devastated," Orringer explained. He added, however, that "[UNC officials] will do everything they can to help us continue to function as a center."
To meet this goal, the center must address all aspects of patient care, including the emotional trauma of living with the potentially debilitating disease, said Mary Abrams, a social worker with the adult sickle cell clinic at the center. "We develop with our patients an ongoing, lasting relationship," she added.
Bates agreed, referring to her care-givers as a second family.
In addition to the emotional support, Rosse said, patients need treatment from physicians who are most familiar with the disease.
Doctors often refuse to treat sickle cell patients, he said. But at the center, he continued, "physicians are willing and able to take care of patients and the patients are not frustrated by their medical care."
Bates said she has been refused treatment before; now, she attends the clinic monthly. "[Doctors] need to be educated to know that it takes more than just morphine," the standard drug for sickle cell patients, she said. "[The center] gives me that extra that I need."
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