In recognition of Sickle Cell Awareness Month, SMA’s LaQueeta Perry spoke with Ms. Sharon Lewis, BS, MPHHA, Executive Director of the Central Alabama Chapter of the Sickle Cell Disease Association of America (SCDAA).
Sickle cell anemia is the most common form of sickle cell disease (SCD).
Sickle cell disease occurs in 1 out of every 500 African America births and 1 out
of every 36,000 Hispanic American births.
Founded in 1978, the Foundation began as a group of volunteers who identified the need for awareness, education, and support for people in the community affected by sickle cell disease. Their mission is to reduce the morbidity and mortality associated with the disease through education and advocacy. To accomplish this mission, the Organization focuses on community outreach, education and testing while focusing on counseling, newborn screening follow-up, and psychosocial support for those directly impacted. “We are a national Organization with programs all over the country,” said Ms. Lewis. “We are a well-organized group of trained professionals, certified and equipped to handle these types of services. The members of our Organization can be trusted to provide the support and education patients need.” Ms. Lewis indicated there are 7 districts in Alabama, as well as a training center in Mobile, and added that everyone in the Birmingham office has completed the training program. “The Organization also partners with Dr. Tom Howard and Dr. Lee Hill at Children’s Hospital, as well as Dr. Tim Townes and Dr. Frederick Goldman at the University of Alabama at Birmingham (UAB) to ensure that our staff is clinically knowledgeable, trained and abreast of the latest findings, therapies and research available to help patients with sickle cell disease,” she said. “To support patients with taking advantage of good clinical care, our Organization assist with daily needs such as helping to purchase medication, medical equipment and supplies, medical transportation, utility assistance, optical and dental services on-going.
The Association’s Impact on Early Detection for Children
Alabama was one of the first states in the country to develop a relationship with its public health department to develop a strategy for early detection. “The effort took roughly 10 years [1978 – 1988] to forge a partnership with the state of Alabama to add a drop of blood to test for Sickle Cell,” Ms. Lewis noted. Now, every baby born in the state of Alabama is tested at birth for Sickle Cell Disease and Trait. “Once a [pediatric or an adolescent] patient is identified as having sickle cell, we are responsible for getting their parents the counseling and education they need to care for their children. National studies have shown early detection and patient education significantly reduce the morbidity rate for patients with sickle cell. For those identified as having Sickle Cell Trait, it is important that they understand, and are educated on future precautions and childbearing.
As the number of children surviving sickle cell improved, the Association reached out to Children’s of Alabama to help address the need for ongoing support for these patients and families. “When we first started, the life expectancy for children was about 21 years of age; but due to improved care we don’t talk about life expectancy anymore.” said Ms. Lewis. “Not only has life expectancy increased, but the quality of life has been enhanced tremendously.”
Adult Patient Success Story
With longer life expectancy, the need for better adult care became absolutely essential; therefore, the Board of Directors for our Organization approached UAB and the Kirklin Clinic to find a solution. After a series of meetings, both institutions agreed that a comprehensive treatment center for adults needed to be established. But, the difficult challenge from both institutions was finding the funding to do so. The Sickle Cell Organization took the challenge head on, and sought out help from the community, in various capacities to raise funds to support a comprehensive center. It took five years, but in 2006, the Organization completed the fundraising campaign and raised $ 1 million dollars to make the dream a reality. The program is currently funded by the Association and includes a Physician’s Assistant, Hematologist, and Social Worker.
What Healthcare Professionals Need to Know
“Healthcare Providers should know that they are welcomed and needed in the Sickle Cell community. There are not enough Sickle Cell specialist to often care for all the many needs of the affected population, especially in adult care. Providers who are interested in Sickle Cell should pursue becoming more knowledgeable and take a more active role in extending themselves to provide care to those affected, even if that is not their direct field of expertise. Providers should know that people living with Sickle Cell expect to live, and have a normal life span, and will need the healthcare system prepared to provide adequate, and compassionate care.
Lastly, Providers should be more considerate about the patience that may be required to help care for patients with the disease. “Sickle cell patients are extremely taxing on the provider to the point some providers simply turn them away which creates a major problem in our community for our population [Birmingham, Alabama],” added Ms. Lewis.
Message to Healthcare Professionals
Ms. Lewis stressed that, “We want the Providers to please allow the Organization staff to help support them in getting patients to care, helping patients be more compliant, and helping them to maintain stable lives.” We feel that if they allow us to support them, the care and services that they need the patient to follow through with, will be less complicated and frustrating”. The Central Alabama Sickle Cell Foundation has many programs and services to offer the affected population, community and healthcare providers.
To learn more resources and services for patients with sickle cell disease, contact the national organization your local chapter of the Sickle Cell Disease Association of America (SCDAA).