by La Risa Lynch
When Gloria Johnson is having a Sickle Cell crisis the last place she wants to be is in an emergency room.

“These doctors don’t know what they are doing,” Johnson, 55, said. “They come into the room and ask crazy questions (like) how long have you had it? How did you get it? Then they proceed to try to treat you for conditions and illnesses that you don’t have. They don’t treat you for sickle cell.”

Ending up in an emergency room is a possibility for Johnson if state legislators don’t restore funding to her near West Loop medical center where seeks treatment for this chronic blood disorder. The state legislators axed $1.9 million from the University of Illinois at Chicago (UIC) Sickle Cell Treatment Center to try to plug a $13 billion deficit.

The lost of funding guarantees the clinic will close come July 1. Johnson, who travels 31 miles from her Matteson home to the clinic for treatment, hopes it doesn’t come to that.

“The sickle cell center has literally been a life line to me,” Johnson said, “…and I plead to the governor do not close the sickle cell center ever.”

Johnson, fellow sickle cell patients and center officials attended a press conference last week urging state legislators not to balance the budget on the backs of the poor and medically indigent.

“We understand that there are budget cuts that need to be made, but make them … on waste, don’t make them on vital programs,” said Bonnye Johnson, UIC’s sickle cell center’s community health education and outreach coordinator.

She said funding for the sickle cell center is not included in this year’s proposed budget. The center receives funding from the state’s tobacco settlement fund, which subsidizes health and smoking cessation programs. Last year, the state cut $600,000 from the center’s budget.

“So it is not like we are asking them to take something out of the operations budget,” Johnson said. “We are asking them to use those funds for what they were meant to be used for.”

The center is the only acute adult care sickle cell treatment center in Illinois and serves more than 800 patients, some traveling from downstate for treatment. Keeping the center open is critical, explained Joseph DeSimone, UIC Sickle Cell Center’s director.

DeSimone said there are few treatment centers for the disease, because it mostly affects poor minorities. Insurance companies, he contends, don’t see treating this disease or its patients are profitable.

“For that reason, adult care is not something that people think about,” DeSimone said, adding that the UIC center provides specialized care for the disease that is rarely understood.

Sickle Cell is an inherited blood disease that effects red blood cells and cause chronic depilating pain, which is often described as worst than childbirth. In sickle cell, usually round-shaped red blood cells become deformed and crescent-shaped.

The shape makes the cells hard to pass through blood vessels, often depriving organs of oxygen. As a result, people with sickle sell also suffer strokes, kidney and liver damage.

“The greatest number of death from a genetic disease comes from sickle sell,” DeSimone said.

Logan Square resident Joan Green also laments going to the emergency room for treatment. Hospital staff, Green said, just assume sickle cell patients are “drug addicts” using the disease as an excuse to get powerful pain-killers.

She called a recent trip to the emergency room as “horrible.” Green recalled that after a doctor informed a nurse of her medication dosage, the nurse diluted it. She said her pain worsen, requiring her to be admitted.

“With the acute care center, you bypass the emergency room,” the 54-year-old said. “We need this clinic.”

Losing the funds also affects the center’s community outreach and screening programs, UIC nurse Diana J. Wilkie said. Community outreach, she added is important to educate people how the disease is transmitted to children. Wilkie noted that 1 in 10 Blacks carry the sickle cell trait and “if two of them get together, then a baby with sickle cell can be born.”

“Without that kind of education happening, we are going to have more babies with the disease,” she said.

The center has the backing of state Rep. LaShawn Ford, who met with the center’s patients and officials when they recently lobbied legislators in Springfield. Ford is championing the center’s cause after discovering some of his former students suffered from the disease.

“I think is it important the governor looks at this program closely and make sure that he does what he can to save it,” he said, noting that preliminary budget talks emphasize no new spending.