Access our Sickle Cell Disease flyer (PDF - 173 KB) for a brief overview of our investments, including a map of where the work is carried out!
New resources
Sickle cell disease (SCD) is an inherited red blood cell condition affecting more than 100,000 people in the United States. People living with SCD are born with the condition because the sickle cell gene is passed on from both parents. There are about two million people living in the United States who carry the sickle cell trait . Each year, newborn screening programs find about 1,800 babies who have this condition.
SCD occurs most often among people of African ancestry. One in 365 African American babies are born with SCD. The disease also occurs in people of Hispanic, Mediterranean, Middle Eastern, and Indian heritage.
Having SCD means that a person’s red blood cells break easily and clog blood vessels to block blood flow to organs and tissues. This results in anemia and periodic acute pain episodes. Ultimately, it can damage tissues and vital organs. SCD can lead to increased infections and premature death.
Unfortunately, fewer than half of children living with SCD in the US receive disease-modifying treatment.
If left untreated, this disease can cause:
- Your quality of life and your family’s quality of life to be lower
- You to not be able to go to school or work, which will cost you money
- Expensive bills from hospitalizations, doctor visits, and treatments
Our work in this area
Since the 1960’s, we have worked to equip our health care systems so that they find and treat people with the disease as soon as possible. We support clinics and community organizations that help with testing, counseling, treatment, and education. We want to make sure all children living with SCD play, go to school, and thrive as they become young adults. We imagine a world that supports their social, health, and emotional needs. Children living with SCD should have dignity, autonomy, independence, and active participation in their communities.
We provide grants1 that create regional networks of care, education, and social services across the United States.
From 2017-2021, the HRSA-funded investments have:
- Reached more than 25% of all people with SCD through 51 clinical sites and 49 community-based organizations. This is about 25,000 people.
- Reached over 1,200 clinicians who prescribed disease-modifying therapies. These treatments can improve patient’s quality of life by reducing the number of pain episodes. This reduces the number of emergency care visits and hospitalizations.
- Equipped over 3,700 clinicians with better knowledge so that they could provide better care. Expert clinicians participated in online mentoring with other health care providers, including specialized seminars on COVID-19.
Program structure
We fund a portfolio of three programs. Together, the programs strengthen the system of care and support by:
- Educating patients, families, and providers so that they partner in their care
- Helping families get the best care that is based on the best science
- Fostering partnerships between clinicians, community organizations and other stakeholders to improve the ability to deliver the best care across the life course.
This program funds 5 comprehensive sickle cell disease centers that provide care to people in their region2. The TDPs provide direct clinical care and help other clinics, through training, to be able to deliver the best care. The program is designed as a “hub-and-spoke model.” Experts in centrally based hospitals, clinics, or university health centers (the “hub”) provide help to the communities where people live and use services (“spokes”). See the list of demonstration programs.
The goal of this program is to make sure that every person living with SCD has access to a sickle cell-based expert.
Funding details for this work: HRSA-21-032 archived funding notice at grants.gov.
This program funds 25 community-based organizations (CBOs)3. These organizations sit within the five regions. These CBOs help families affected by SCD to get local resources and the best available care. Access the listing of community-based organizations.
Together with the TDP program, the goal of the FP program is that every person with SCD has access to a comprehensive care team. The CBOs in the FP serve as “community hubs” to strengthen the linkage from the community to specialty care.
Funding details for this work: HRSA-21-036 archived funding notice at grants.gov.
We fund Abt Associates, Inc. to provide this coordinating center (HNCC). It provides the awardees of our Treatment Demonstration Program (TDP) and the Follow-Up Program (FP) with the resources they need to make sure that they provide the best care teams to these children and their families. This center supports the needs of all the these awardees through:
- Training and resources to carry out, evaluate, and improve their work
- Helping them to track data on patient outcomes and the quality and type of care the patients receive
- Education, communication, and collaboration to encourage best practices
1This work is authorized under the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention and Treatment Act of 2018, 42 USC § 300b-5.
2The legislative authority supporting this work is: 42 USC § 300b-5(b) (§1106(b) of the Public Health Service Act
3The legislative authority supporting this work is the Special Projects of Regional and National Significance (SPRANS).
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