Staff Writer
It was a matter of time for Shirley Savage-Hammonds.
ZACH BOYDEN-HOLMES/STAFF
Sickle cell patient Shirley Savage-Hammonds (left) examines a research consent form with MCG nurse Latanya Bowman. MCG, Morehouse School of Medicine and the University of Florida share a $5 million grant to improve sickle cell disease care.
ZACH BOYDEN-HOLMES/STAFF
Sickle cell patient Shirley Savage-Hammonds (left) examines a research consent form with MCG nurse Latanya Bowman. MCG, Morehouse School of Medicine and the University of Florida share a $5 million grant to improve sickle cell disease care.
ZACH BOYDEN-HOLMES/STAFF
Sickle cell patient Shirley Savage-Hammonds (left) examines a research consent form with MCG nurse Latanya Bowman. MCG, Morehouse School of Medicine and the University of Florida share a $5 million grant to improve sickle cell disease care.
The 43-year-old Williston woman knows she can wake up at 2 a.m. with terrible pain in her back and legs, pain that Percocet won't "knock down," she said. It is then that she heads to the emergency room, and on to the observation unit, where sickle cell patients like her in pain crisis are quickly brought to a bed and administered pain medication.
"It's a whole lot better," Ms. Savage-Hammonds said.
She is among about 5,000 sickle cell patients in Georgia and Florida who might benefit from the Southeastern Exploratory Sickle Cell Center of Excellence, a new partnership between Medical College of Georgia, Morehouse School of Medicine and the University of Florida to provide better treatment and better understanding about the disease.
Sickle cell is the most common genetic illness in the country, with an estimated 110,000 people living with the disease, said Robert Gibson, an associate professor in occupational therapy at MCG and a leader in the project.
That number is growing as better treatments lead to longer lives, said Abdullah Kutlar, the director of the Sickle Cell Center at MCG and principal investigator for the project. In the 30 years the National Institutes of Health has been funding clinical research into sickle cell, the life expectancy for patients has increased from living into their teens to living into their 50s, which can create a problem of its own once these patients reach adulthood, Dr. Kutlar said.
"Once they are over 18, there is no insurance coverage for most of them," he said. "They are left out in the cold."
And that compounds the problems some of them have, Dr. Gibson said.
"Because we know in this country, without insurance, care is difficult," he said. "And it becomes even more difficult to get care when you have a chronic illness that needs an ongoing relationship with providers who know you, who understand your illness, and can help you manage it."
One of the main goals of the center is to help patients transition from pediatric to adult care in a "medical home" with either a family medicine or primary care provider. Hematologists are often the sickle cell experts in a health system but with a growing population of sickle cell patients "there will never be enough hematologists," Dr. Gibson said.
Education will be a key thrust of the project, which is funded by a five-year, $5 million grant from the National Center on Minority Health and Health Disparities. Talking with those primary care providers and medical students about how to care for sickle cell patients should ease some of the misunderstandings these patients often encounter in health care, particularly in emergency rooms.
The red blood cells of sickle cell patients are oddly shaped and sticky and do not move as easily through small blood vessels, which can lead to painful blockages. Sickle cell patients in pain crises often seek care in the emergency room. Part of MCG's effort, led by Emergency Medicine Associate Professor Matthew Lyon, is to treat sickle cell patients who show up with pain crises in the observation unit.
The rooms are more like a regular hospital room, they are quieter, and the patients can get Patient Controlled Analgesia, which is a better way to control pain by allowing patients to give themselves smaller, incremental doses, Dr. Kutlar said.
"For sickle cell, I can tell you this has been very effective and a big step forward," he said.
Educating providers can also help to avoid the suspicion sickle cell patients seeking pain relief can encounter.
"There is no single test that will reliably tell you that a patient is in crisis or not in crisis. It's very subjective. And that creates a problem," Dr. Kutlar said.
"The global problem, the larger problem is I think the mind-set of many providers who really don't know sickle cell very well. And they have this stigma of all sickle cell patients are drug seekers."
Sickle cell patients are black or Latino and there is often an even greater likelihood of undue suspicion, Dr. Gibson said.
"There is a strong sense of racism," he said. "Part of the judgment is that they are black. And because they are black, it is easier to make the assumption that they are drug-seeking."
While there is a widely acknowledged disparity in health care and health outcomes between whites and blacks, it is even more pronounced for sickle cell patients.
"What we are seeing is having sickle cell is a further cause of disparity even among African Americans," Dr. Kutlar said.
The problems begin in childhood and carry over into adulthood, he said.
"They miss a lot of school," Dr. Kutlar said.
"If you have an illness like sickle cell disease, your ability to get a good education, your ability to get prevocational experiences, your ability to enter adulthood with all of the necessary skills to have a job that has insurance is very challenging," Dr. Gibson said.
The disparity for sickle cell patients is pronounced even on the research side, they said. They point to a 2006 study in the journal Pediatrics that found that cystic fibrosis, a disease more likely to affect whites, got nine times as much research funding per patient from both the federal government and private sources as sickle cell disease.
"Although it is uncomfortable to contemplate, we must consider the possibility that conscious or unconscious racial bias adversely affects the availability of resources not only for research and the delivery of care, but also for the improvement of that care," the authors note.
Reach Tom Corwin at (706) 823-3213 or tom.corwin@augustachronicle.com.
What is sickle cell disease?
Sickle cell patients have an abnormal form of hemoglobin in their red blood cells that causes those cells to be oddly shaped and more fragile. Normal red blood cells are softer and more pliable and pass easily through small blood vessels; sickled red blood cells are sticky, oddly shaped and can cause small clots, leading to pain and organ damage. Those blood cells also don't survive as long and their destruction can lead to anemia. Children with sickle cell disease are also at much higher risk of infection and stroke. About 1 in 400 blacks is born with it, and there are an estimated 110,000 with it in the U.S. It also affects Latinos to a lesser degree, and people not of African descent.
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