International conference to discuss research, unresolved issues of sickle cell disease

Carlton Haywood Jr., Ph.D., an associate faculty member of the Johns Hopkins Berman Institute of Bioethics, will mark the 100-year anniversary of the discovery of sickle cell anemia on Wednesday, Aug. 4, with a talk on the impact that race has had on the history of research and treatment of the inherited blood disorder.

In the United States, sickle cell anemia is mostly observed in African-Americans and Hispanics from the Caribbean and Central and South America. Research suggests that the minority status of the patients has sometimes had a negative impact on care. Haywood, who has sickle cell disease and is an assistant professor of hematology at the Johns Hopkins University School of Medicine, will speak at 8:45 a.m. at the annual convention of the National Medical Association in Orlando, Fla.

In addition to describing his perspective on the role of race in the history of the disease, Haywood plans to discuss how its "racialization" continues to affect sickle cell policy. The most common genetic condition detected by newborn blood screenings in the United States, sickle cell disease occurs in an estimated 1 in 500 African-Americans. About one in every 1,000 to 1,400 Hispanic-Americans is also diagnosed with the disease at birth, while among other racial and ethnic populations, cases are much more rare.

Sickle cell disease is caused by the inheritance of two defective genes — one from each parent who is a carrier — that cause red blood cells to lose their smooth, donut shape and become sharp and rigid. This occurs when hemoglobin releases the oxygen it delivers throughout the body. The cells then get stuck in blood vessels, depriving organs and tissue of oxygen, causing chronic anemia, periodic severe pain, and other life-threatening complications.

Because the "pain crises" can be sudden and excruciating, sometimes the most effective treatments during an emergency are powerful opiates such as morphine. Doctors are very cautious about administering potentially addictive drugs, and many sufferers who return repeatedly for pain relief are sometimes perceived as being addicts. Haywood says issues of race and other socioeconomic factors contribute to the mistrust and rifts in the physician-patient relationship that are common among this patient population.

Working with Mary Catherine Beach, M.D., M.P.H., also on faculty at the Berman Institute, and other colleagues at Johns Hopkins University, Haywood has published several studies over the past year that seek to identify how trust can be engendered between caretakers and patients with sickle cell disease.

That relationship is the topic of another talk that Haywood will deliver in November at an international conference sponsored by the National Institutes of Health. The James B. Herrick Symposium: 100 Years of Sickle Cell Research will be held in Bethesda, Md., on Nov. 16 and 17.

The event will bring together scientists, practitioners, academics and students to discuss research, unresolved issues and the burdens of sickle cell disease around the world — while exploring the scientific way forward.