Statement by Secretary Sebelius on National Sickle Cell Disease Awareness Month

September is Sickle Cell Disease Awareness Month
Statement by Secretary Sebelius on National Sickle Cell Disease Awareness Month

Every September, we recognize National Sickle Cell Disease Awareness month to increase public knowledge about Sickle Cell disease (SCD).   SCD is the most common inherited blood disorder; an estimated 72,000 Americans live with SCD, and approximately two million Americans, including one in 12 African Americans, carry the Sickle Cell Trait.

Although there is not yet a widely available cure, we have made major progress in increasing the life expectancy of people with sickle cell disease.  The U.S. Department of Health and Human Services (HHS) is continuing to identify ways to improve the quality of care for all patients with SCD. Earlier this year, HHS launched the Sickle Cell Disease Initiative, which brings together multiple HHS agencies – including the National Institutes of Health, Health Resources and Services Administration, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Food and Drug Administration, and Agency for Healthcare Research and Quality –across HHS to find better ways to educate the public about SCD, enhance research to find better treatments, and train more clinicians using evidence-based guidelines that promote quality, comprehensive care.  While continuing HHS’ focus on the needs of children with SCD, HHS is increasing its attention on children with SCD transitioning to adult care and adults with SCD.

As part of this effort, today the Agency for Healthcare Research and Quality is awarding an $865,365 grant, over a three year period, to Dr. Paula Tanabe at Duke University to conduct research that will help improve the quality of care provided by emergency departments (EDs) for adults with SCD.  A recent study indicates that approximately 25 percent of adults with SCD visit the ED more than six times a year, and many of these patients have potentially life threatening complications.

Continued progress in helping people with SCD will require strong collaboration, including government agencies, industry, health care providers, biomedical researchers, community leaders, and individuals and families affected by SCD.  This September, and throughout the year, I hope we will reaffirm collectively our commitment to addressing the needs of people and families with SCD.

More information on the Sickle Cell Disease Initiative can be found at http://minorityhealth.hhs.gov/assets/pdf/Checked/1/sickel_cell_anemia_factsheet.pdf.

More information on Sickle Cell Disease can be found at http://www.nhlbi.nih.gov/new/sicklecell.htm.
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Sickle Cell Disease:

 Increasing Access and Improving Care

Sickle cell disease affects millions of people worldwide. It is most common among people from Africa, Mediterranean countries, the Arabian Peninsula, India, South America, Central America, and the Caribbean. An estimated 70,000-100,000 Americans live with Sickle Cell Disease (SCD) in the United States and more than 3.5 million Americans have Sickle Cell Trait (SCT). SCT occurs in 1 in 12 African Americans.

• Advances in health care have increased life expectancy for individuals with SCD, but much more needs to be done to expand access, improve health care and health outcomes.

• Better coordination and collaboration can significantly improve SCD care through enhanced public health data about the burden of disease, reliable access to quality care and services, development of new therapies, and biomedical and behavioral research.

Secretary Sebelius has charged the Department of Health and Human Services (HHS) with making SCD a priority. These HHS operating and staff divisions are developing the SCD Initiative:

• Agency for Healthcare Research and Quality
• Centers for Disease Control and Prevention
• Centers for Medicare & Medicaid Services
• Food and Drug Administration
• Health Resources and Services Administration
• National Institutes of Health
• Office of Minority Health
• Office of the Assistant Secretary for Planning and Evaluation

HHS will take specific actions to improve the health of people with SCD:

• Improve the care of adults and children with SCD through development and dissemination of evidence-based guidelines.

• Identify measures of quality of care for individuals with SCD and incorporate them into quality improvement programs at HHS.

• Increase the availability of medical homes to improve access to quality routine care by knowledgeable providers, and specialty care.

• Provide State Medicaid officials, health care providers, patients, families, and advocacy groups with information about federal matching funds for education and services related to SCD care and treatment.

• Create a comprehensive database of individuals with SCD to facilitate the monitoring of health outcomes and clinical research always respecting and protecting patient privacy.

• Work with the pharmaceutical industry and academic investigators to increase the development of effective treatments for patients with SCD.

• Support research to improve health care for people with SCDincluding pain and disease management.

• Support research to understand the clinical implications for individuals with sickle cell trait.

 • Engage national and community-based sickle cell advocacy organizations, and SCD experts in discussions as HHS actions progress.

For additional information on Sickle Cell Disease, please visit

http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhatIs.html  or http://www.nhlbi.nih.gov/new/sicklecellQ_A.htm

http://healthypeople.gov/2020/topicsobjectives2020/overview.aspx?topicid=4

If you have additional questions, please contact the Office of Minority Health at 1-800-444-6472

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HHS’ Sickle Cell Disease Initiative

The Sickle Cell Disease Initiative will focus on better coordination and collaboration in order to improve care through enhanced public health data as it promotes reliable access to quality care and services, development of new therapies, and biomedical and behavioral research.

Sickle Cell Disease: Increasing Access and Improving Care

An estimated 72,000 Americans live with Sickle Cell Disease (SCD) in the United States and approximately two million Americans, including one in 12 African Americans, carry the Sickle Cell Trait (SCT). While advances in health care have increased life expectancy for individuals with SCD, much more needs to be done to expand access and improve health care and outcomes.

Better coordination and collaboration across HHS agencies can significantly improve the care of people with SCD through enhanced disease surveillance, reliable access to quality care and services, innovative new drug development, and biomedical and behavior research.

Secretary Sebelius has charged HHS with making SCD a priority area of focus. The following operating and staff divisions have come together to develop the HHS SCD Initiative:

• Agency for Healthcare Research and Quality
• Centers for Disease Control and Prevention
• Centers for Medicare & Medicaid Services
• Food and Drug Administration
• Health Resources and Services Administration
• National Institutes of Health
• Office of Minority Health
• Office of the Assistant Secretary for Planning and Evaluation

HHS’ SCD Initiative

Below are specific actions that HHS will take to improve the health of people with SCD:

• Improve the care of adults and children with SCD through development and dissemination of evidence-based guidelines.
• Identify measures of quality of care for individuals with SCD and incorporate them into quality programs at HHS.
• Increase the availability of medical homes to improve access to quality routine care, including specialty care.
• Provide State Medicaid officials, health care providers and patients and advocacy groups with information about federal matching funds for education and services related to the care and treatment of SCD.
• Create a comprehensive database of individuals with SCD to facilitate surveillance and the conduct of clinical research.
• Work with the pharmaceutical industry to increase the pipeline of effective treatments for patients with SCD.
• Support research to improve health care for people with SCD – including pain and disease management – and to understand the clinical implications for individuals with sickle cell trait.
• Convene a roundtable to engage national sickle cell advocacy and expert organizations.

Additional Information

• What You Should Know About Sickle Cell Trait [PDF | 754KB]
• What You Should Know About Sickle Cell Disease [PDF | 1.4MB]
• CDC Sickle Cell Trait
• What is Sickle Cell Anemia?
• Questions and Answers about Sickle Cell Trait

If you have additional questions, please contact the Office of Minority Health at 1-800-444-6472

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* The above information is adapted from materials provided by USA Department of Health and Human Services (HHS)
** More information at USA Department of Health and Human Services (HHS)