November 14, 2011

Sickle cell community forum to educate, empower patients

Johns Hopkins Medicine last week brought together community members to develop a communications campaign to engage patients, health care professionals and legislators in the fight against sickle cell disease.

“Linking Awareness to Action”—a dinner, panel and group discussion—was the first of a four-part community forum series to educate and empower individuals living with sickle cell disease, a painful and disabling inherited blood disorder that affects mostly African-Americans.

“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,” said Sophie Lanzkron, 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.

From developing hydroxyurea, the only drug approved by the FDA for the treatment of sickle cell disease, 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.

The event, held in the Koch Cancer Research Building, was 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.