What is sickle cell disease?
- Sickle cell disease is a genetic condition that affects the body’s red blood cells. It occurs when a child receives two sickle cell genes—one from each parent. In someone living with this disease, the red blood cells become hard and sticky and look like a C-shaped farm tool called a “sickle”.
- Sickle cell disease affects an approximately 100,000 Americans. And, globally, four million people are affected by the disease.
- It’s been more than a century since Dr. James B. Herrick became the first person to document the existence of sickle cell disease (SCD).
- A cure is within our reach. At the department of Health and Human Services we are committed to extending the lives of patients with SCD by 10 years within 10 years.
How does this disease impact ethnic and racial minorities?
- While the disease is most common among African Americans, other racial and ethnic groups are affected, including Latinos and people of Middle Eastern, Indian, Asian and Mediterranean backgrounds.
- According the Centers for Disease and Prevention, sickle cell disease occurs among 1 out of every 365 Black or African American births and 1 out of every Hispanic-American births.
- Sub-Saharan Africa has the greatest burden of disease, with more than 300,000 babies born with the disease each year. Unfortunately, 240,000 will die before their 5th SCD is now a primary global cause of infant mortality.
What treatments are available for people living with sickle cell disease?
- In the last century there were only two drugs to treat SCD. Today, there are nearly 40 therapies being tested under clinical trial to treat manage pain symptoms that patients are likely experiencing.
- Just 1 in 4 patients in the U.S. with SCD are receiving hydroxyurea, which helps reduce pain crisis and is the standard of care for this disease.
- HHS is starting a new program to help improve the care and treatment of people living with sickle cell disease. The new HHS SCD Training and Mentoring Program for Primary Care Providers (STAMP) program will train primary care providers on the basics of SCD care.
- We have to ensure that patients with sickle cell disease don’t become collateral damage in the fight against the opioid epidemic.
- During a pain crisis they are often subject to discrimination, which ignores the complex nature and mechanism of acute and chronic sickle cell pain. We are committed to protecting their access to the appropriate and safe use of opioids.
What happens when a child living with sickle cell disease becomes an adult?
- Transition can be a difficult and overwhelming time for teens with SCD and their families because it can also coincide with major life changes and milestones that young adults will face such as attending college, finding a job, or moving to a new location.
What is being done to find a cure for all?
- HHS committed to extending the lives of American with SCD by 10 years, within 10 years.
- Through a collaborative new effort called the Cure Sickle Cell (CureSC) Initiative, researchers in academia, government and industry—with the critical help of patients, their caregivers and patient advocacy groups—are now working together to accelerate the development and testing of the most promising genetic-based curative therapies
Admiral Brett Giroir is the 16th United States Assistant Secretary for Health in the Department of Health and Human Services. He serves as the Secretary’s principal public health and science advisor. He oversees Office of the Surgeon General and the U.S. Public Health Service Commissioned Corps, as well as key public health and science offices that focus on transforming the current “sick-care system” into a “health-promoting system.”