Assemblymember Brown Advocates for Sickle Cell Disease Patients

During Assemblymember Cheryl R. Brown’s 3rd Annual Sickle Cell Forum at Kaiser Permanente, a panel of expert speakers provided general information about sickle cell disease and strategies for improving quality of care. The forum, moderated by Farron Dozier, CEO of What’z Da Count, Inc., featured: Mary Brown, CEO of the Sickle Cell Disease Foundation of California (SCDFC); Dr. Ron Brathwaite, Loma Linda University Medical Center (LLUMC); and Charlotte Dixon Burke, RN. “During last year’s legislative session, I authored AJR 51 to urge the President and members of the U.S. Congress to support the continuation of funding for sickle cell anemia centers and research across the nation,” stated Assemblymember Brown. “Although they listened and restored the funding, there’s certainly more that we can do to raise public awareness and support patients struggling with the disease.” Sickle cell anemia is a serious blood disorder that causes severe pain, shortness of breath, bone tenderness, organ damage and other medical problems. The illness affects one out of 500 African Americans and one out of 36,000 Latinos. It has also been found in individuals of Indian, Middle Eastern and Mediterranean descent. Dr. Brathwaite, a Hospitalist and Urgent Care Physician at LLUMC, has made it his mission to ensure that sickle cell patients have access to quality care. He currently runs a clinic for adults with sickle cell disease through the SAC Health Systems in San Bernardino. “During medical school, sickle cell anemia was hardly discussed,” stated Dr. Brathwaite. “It wasn’t until I began my residency program when I realized that no one ever taught me about sickle cell anemia in a way that I can understand and be effective.” Charlotte Dixon Burke, a veteran pediatric nurse, shared a similar experience as a former nursing student. “I can’t remember the amount of education I received about sickle cell disease when I was in nursing school,” she said. “I had to learn about sickle cell disease on my own. I started searching classes and reading more about it. Once I started that journey, it never stopped.” During the summer, Burke volunteers as the head nurse at a camp for children with sickle cell disease through the SCDFC. SCDFC was founded over 50-years-ago to provide assistance to individuals with sickle cell anemia. The organization is currently managed by Mary Brown, a leading patient advocate. According to Brown, sickle cell patients have been without adequate treatment for several years. “I’m glad to stand here and tell you that we have 16 new drugs on the market for sickle cell disease,” she said. “However, I’m saddened to tell you this hasn’t occurred since 1910. We only have one drug approved by the FDA, and it’s under-utilized.” Brown is currently working on a project that trains health care providers on how to care for adults with sickle cell disease. “Sickle cell patients need to be surrounded by people who care about them and are willing to go the extra mile to speak out for them,” she concluded. Following the panel presentations, Kenneth Carson, a sickle cell patient, gave an account of living with sickle cell disease. In addition to his struggle, his brother and sister also suffered from debilitating diseases. “Anytime I was in the hospital, my mother would be at my bedside, holding my hand, with tears in her eyes, wishing that she could take my pain away,” he said. “She had the amazing ability to love us through all of our difficulties including the battles we had growing up in the 60’s and 70’s with a disease that nobody knew anything about.” He credits his longevity to his mother and the support that he received from various medical staffers. “Nurses are game changers,” he said. “I can’t emphasize enough the difference that nurses make. The work that you do is what changes the game. When you have a wonderful nurse that will go to battle for you, it’s a blessing.” Sickle cell patients are encouraged to seek help from the SCDFC. The office can be reached by calling (909) 743-5266. LLUMC offers a support group for adults with sickle cell disease every 2nd Thursday of the month from 6:30 – 8:30 p.m.