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National Sickle Cell Disease Awareness Month Observations

Dr. Susan Shurin - September 30, 2011

Screen shot of a poster with the title, "Increasing Access and Improving Care"

As we come to the end of National Sickle Cell Disease Awareness Month, I want to share some noteworthy items about continuing efforts to improve the lives of people with this disease.

HHS Secretary Kathleen Sebelius issued a statement about the observance, which noted the continued importance of collaboration and announced the funding of a three-year research grant to help improve the quality of care provided by emergency departments for adults with sickle cell disease.
Grantee Linzhao Cheng, Ph.D., of Johns Hopkins University, and colleagues published a paper in the journal Blood describing the use of induced pluripotent stem cells (iPS cells) derived from a patient to cure that patient's sickle cell disease in a dish in the lab by correcting the gene at fault. The work brings us one step closer to developing gene therapies for sickle cell and related diseases.
Congratulations to Julie Makani, M.D., on receiving a Royal Society Pfizer Award for her research into sickle cell disease and anemia. Based in Tanzania's Muhimbili University of Health and Allied Sciences, Dr. Makani will be conducting a study on the use of hydroxyurea to treat anemia in people with sickle cell disease. The Royal Society reports that her hope is to improve sickle cell diagnosis and treatment and reduce the burden of the disease on individuals, their communities, and their healthcare system. Dr. Makani gave a wonderful presentation at last year's Herrick Symposium, and I look forward to seeing her again at our upcoming genomics meeting to be held during the American Society of Hematology meeting in December.
On behalf of colleagues from six HHS agencies and the Office of the Secretary, Althea Grant, M.P.H., Ph.D., of the CDC presented a poster at the Sickle Cell Disease Association of America (SCDAA)'s 39^th annual convention this week about HHS's efforts to increase access and improve care of sickle cell disease. A PDF fact sheet can be found at http://minorityhealth.hhs.gov/assets/pdf/Checked/1/sickel_cell_anemia_factsheet.pdf. The NHLBI also had an exhibit table at the meeting staffed by DIR's Cassie Seamon, R.N., and medical technologist Darlene Allen.

The NHLBI remains committed to conducting research, improving care, and educating the public and other stakeholders about sickle cell disease and related conditions. More information can be found at http://www.nhlbi.nih.gov/new/sicklecell.htm.

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