There has been a dramatic change in sickle cell disease treatment outcomes in our lifetimes. In the early 1970s, being diagnosed with this genetic disorder was more like receiving a death sentence.
Children were not expected to live past the age of 16. Today, sickle cell patients can live well into their 40s. Despite these terrific advances in treatment, nearly 3,000 Alabamians still struggle to manage sickle cell disease today.
“Sickle cell disease is a very complex condition. Patients experience episodes of acute pain when sickle red cells block the flow of blood, cutting off the oxygen supply to tissues,” explained Ravi Bhatia, M.D., director of the UAB Division of Hematology and Oncology and deputy director of the UAB Comprehensive Cancer Center. “Over time, lack of oxygen delivery can cause damage to organs such as the spleen, brain, lungs, and kidneys. Patients are susceptible to infections, and often have severe anemia requiring blood transfusions.
“As we have found treatments to extend life expectancy, we now face the challenge of helping patients transition from pediatric to adult care,” he said.
Originally established in 1995, the Adult Sickle Cell Clinic at UAB has been working to make those important transitions in care possible. Recognizing their task would require a support network that extends far beyond the clinic walls, clinic leadership looked to the Sickle Cell Disease Association of America, North Central Alabama Chapter (known in the Birmingham region as the Sickle Cell Foundation) for partnership in this vital work.
Sharon Lewis, the foundation’s executive director, remembers attending a meeting where the prospect of raising $1 million for the clinic was discussed. Lewis recalls asking herself, “Oh, is that all?” With that ambitious goal in mind, she convinced the foundation’s board of directors to pledge $1 million to the clinic in December 2010.
Five short years later, after hosting many successful events and debuting a custom vehicle tag to raise awareness and funds, the foundation delivered the final installment on its million-dollar promise. Michael Bell, foundation board president, presented the check at a reception in the Wallace Tumor Institute lobby on Dec. 10, 2015.
“Sharon never asked permission to make this pledge. She, like Dorothy from the Wizard of Oz, led us down a yellow brick road,” Bell said. “Now, the UAB Sickle Cell Clinic is a beacon of hope to our community. There really is no place like home.”
Seth Landefeld, M.D., professor and the Spencer Chair in Medical Science Leadership in the UAB Department of Medicine, recognizes the impact of the foundation’s philanthropy on the clinic’s success.
“The department is fortunate to have the support of the foundation as we seek to address a disease that disproportionately affects African-Americans in our state. Because of the expert care provided by Clinic Director Rita Paschal, M.D., and her team, we are seeing a reduction in the number of emergency room visits and hospitalizations needed to treat the chronic symptoms of our patients,” Landefeld said.
In addition to providing world-class clinical care, one of the most important results of the foundation’s generosity is the addition of a full-time social worker to the clinic staff. According to Dr. Paschal, “The addition of psychosocial services enables us to reach the whole patient. It is a key to both longevity and a better quality of life for this vulnerable population.”
Sickle cell patient Jaquese Scott echoes the sentiment. “Dr. Paschal and the clinic have helped me so much. She sounded just like my mom when I came in to see her, scolding me for wearing clothes that weren’t warm enough to keep me healthy in the cold, and taking good care of me when I did ultimately come down with an infection.
“Now that my mom has passed, I am so grateful for my clinic family. I couldn’t do this without them.”