Johns Hopkins Hosts Sickle Cell Community Forum to Educate and Empower Patients and Health Care Providers
On Nov. 10, Johns Hopkins Medicine is bringing together community members to develop a communications campaign to engage patients, health care professionals and legislators in the fight against sickle cell disease (SCD).
“Linking Awareness to Action” is the first of a four-part community forum series to educate and empower individuals living with SCD, a painful and disabling inherited blood disorder that affects mostly African Americans. Discussion will focus on challenges facing sickle cell patients, an underserved group with chronic health problems often exacerbated by unmanaged symptoms.
“Many sickle cell patients feel like they don’t have a voice because a lack of understanding of the disease has led to stigma and misperceptions,” says Sophie Lanzkron, M.D., director of the Sickle Cell Center for Adults at Johns Hopkins. “We’re trying to overcome that and encourage patients and their families to be better advocates for themselves.”
Participants will develop strategies to improve sickle cell care, such as seeking primary care doctors who can help them to better manage pain and day-to-day health needs.
The event will include dinner, group discussion and a panel with the following participants:
• Sonja Banks, Sickle Cell Disease Association of America
• Lenny Feldman, M.D., iHOMES Network, Department of Medicine at The Johns Hopkins Hospital
• Nicole D. James, sickle cell patient
• Suzanne Nolan, Maryland Chapter of the Cystic Fibrosis Foundation
• Nick Seaver, Burness Communications
From developing hydroxyurea, the only drug approved by the FDA for the treatment of SCD, to current research that uses a patient’s own stem cells to correct the genetic alteration that causes the disease, Johns Hopkins Medicine has a strong history and commitment of improving care for sickle cell patients. The Johns Hopkins Sickle Cell Infusion Center, which opened in 2008, acts as an urgent care center where patients can experience pain relief more quickly. These earlier interventions lead to reduced discomfort and risk of hospital admission, which also translates to decreased spending. The treatment of a typical sickle cell patient costs 30 times more than a congestive heart failure patient because of recurrent emergency department visits prompted by chronic pain.
“Linking Awareness to Action” will kick off with dinner at 5:30 p.m. followed by the panel and group discussion from 6:30 to 8:30 p.m. at the Albert H. Owens Auditorium in Koch Cancer Research Building, located at 1551 E. Jefferson St., in Baltimore. The event is sponsored by the Department of Medicine’s iHOMES Network, the Sickle Cell Center for Adults at Johns Hopkins and the School of Medicine Office of Diversity and Cultural Competence.
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