In honor of September being National Sickle Cell Awareness Month, U.S. Department of Health and Human Services (HHS) Secretary Xavier Becerra issued the following statement today:
Even though advances in medicine are moving us closer to a cure, far too many people with sickle cell disease and those close to them still experience stigma and difficulty getting the care they require. HHS Secretary Xavier Becerra stated, “We can find new, potentially curative treatments and improve the quality of life for people affected by this disease with increased awareness and investment.”
More than 100,000 Americans suffer from sickle cell disease (SCD), the most prevalent inherited blood condition in the country, which disproportionately affects Black and Hispanic people. HHS became a part of the sickle cell disease community in September of this year, raising awareness of the particular problems and obstacles that sufferers of the illness must overcome.
In order to help people with sickle cell disease (SCD) live healthier lives, HHS is responding to the need and funding vital initiatives ranging from data collection and research to the approval of new therapies.
This month, in observance of National Sickle Cell Awareness Month:
- In order to better understand how the data from the Centers for Disease Control and Prevention (CDC) will enhance the lives of those who suffer from sickle cell disease, the CDC extended its program to collect data on sickle cell cases from 11 to 16 states. On September 26–29, the CDC will host a Sickle Cell Data Collection Summit.
- A Sickle Cell Disease Action Plan, outlining agency-wide initiatives to improve SCD care, will be released by the Centers for Medicare & Medicaid Services (CMS). The plan includes new initiatives to raise the standard of care for SCD patients and to assist them in affording potentially life-saving treatments.
- The Food and Drug Administration (FDA) is actively involved in patient-led listening sessions to gather insights from patients and caregivers, as part of their ongoing support for the research and development pipeline related to sickle cell disease.
- In order to assist patients in managing their symptoms and learning about clinical trials, the National Institutes of Health (NIH)/National Heart, Lung, and Blood Institute (NHLBI) has released new resources, including testimonies from people who have sickle cell disease.
- Programs that cover the whole spectrum of care for sickle cell disease, such as early intervention, diagnosis, screening, and successful transition to adult care, are still supported by the Health Resources and Services Administration (HRSA). The programs of HRSA pertaining to sickle cell disease are nationwide; in fiscal year 2023, 91 sites and grantees nationwide received investments totaling $15.2 million.
