Bridging the Gap
For adults with sickle cell disease, Methodist Le Bonheur Healthcare comes to the rescue.
photograph by Graphtographer | Dreamstime.com
When most people think about Mid-South health care, little to nothing is likely to make them think of sickle cell disease as a major forerunner. This is surprising because Memphis is estimated to be the second-largest population affected by sickle cell disease in the United States, and while St. Jude does an exceptional job with pediatric care, adults tend to be all but forgotten, until now.
Methodist Le Bonheur Healthcare opened their Comprehensive Sickle Cell Center in September 2012 in partnership with St. Jude Children’s Research Hospital to combat both chronic and immediate ailments caused by sickle cell disease. “If you’re a kid with sickle cell you don’t want to be anywhere else in the country than St. Jude; they do a wonderful job,” says Mark Yancy, Manager of Operations at Methodist’s Comprehensive Sickle Cell Center. “The issue has been when kids turn 18. The MED does a great job with the Diggs-Kraus facility and they have about 400 patients, but there really hasn’t been a site dedicated to sickle cell other than that center [at The MED] and there are about 1,700 adults affected.”
With the volume of affected individuals in the Mid-South, it was imperative that an additional facility be created to meet the needs of the adult community and avoid more patients slipping through the cracks of a fragmented structure. Not only does the Center provide comprehensive care for adults with sickle cell, it also makes the transition process from St. Jude to the Center easy and comfortable for patients and their families.
For those unfamiliar with sickle cell disease, Yancy says, “It is a hereditary disease and in this area of the country it’s almost universally African American just because of where lineage is traced to in West Africa, but globally it’s not just an African- American disease. Any large urban population of African Americans, be it in Atlanta, Memphis, or Boston, you’re going to have a large sickle cell population just because of the hereditary genetics.”
The genetics of the disease work similarly to the way eye color is determined in that someone can be a carrier of the trait but not necessarily affected, then pass it on to future generations depending on if a mother and father were both carriers of the abnormal hemoglobin gene. “About one in 12 African Americans has the sickle cell trait, and one in 350 is affected by the disease,” says Yancy, “and if you’re born with it you’re likely to die with it.”
The center is divided into two sections: the Infusion Center side and the preventive-care side. The Infusion Center, donated by Jim McGehee, is the “bells and whistles” and attracts the most attention since it provides timely treatment of fluids and treatments as an alternative to emergency departments in an effort to avoid hospital admittance and help patients manage pain of acute crises frequently caused by the disease.
“These crises have been equated to child labor and cause tremendous pain due to the cells not allowing blood to flow properly, and can occur at any time and last anywhere from two hours to two weeks,” says Yancy. “These crises are case specific. Some people have one a month and others rarely have one, but no matter how often you have one, when you’re in pain all you want is someone to fix it.” The nine-chair infusion unit is one of a handful in the nation and the only one of its kind within a 300-mile radius. The preventive- care side functions as a traditional doctor’s office under the care of Medical Director Dr. Owita Mays, encouraging frequent check-ups and providing comprehensive primary care in order to better track and treat chronic symptoms like kidney damage, loss of eyesight, decreased lung function, and stroke associated with the disease.
While the infusion center is open to anyone, Methodist does require the patient to make an appointment with the center first in order to have better knowledge of medical history before they are treated for a crisis. This might seem like it would slow down the growth of the center, but the center has already tripled the amount of patients since its opening, and is crucial to the preventive-care component of the center’s mission. Eventually, it will conduct clinical studies on-site to further research of the disease and test possible new medications in hopes of a cure. Mays says, “This center stands as a light for patients with sickle cell disease.”