The Sickle Cell Disease Association of America, Inc. (SCDAA) was awarded funding from the Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB), Division of Services for Children with Special Health Needs/Genetic Services Branch (DSCSHN/GSB) to work with the SCDAA as the Technical Assistance Center (TAC) for the Newborn Screening Follow-up Program. SCDAA will provide support for up to 17 Community Based Organizations (CBOs) to work with state collaborators that will improve the care and reduce rates of individuals with sickle cell disease (SCD) who are “lost to follow-up” by supporting efforts of sickle cell disease education and service coordination. SCDAA will serve as the National Coordinating Center to provide technical assistance to these CBO’s in an effort create partnerships, collaborations and networks to increase services. This program will enhance the sickle cell CBOs’ ability to ensure that individuals diagnosed with SCD receive appropriate follow-up services including counseling, education, access to a medical home, and other support services. The primary population focus will be families of individuals identified with sickle cell disease through newborn screening, however, all individuals with SCD will be included.
The goal of this program is to ensure that individuals diagnosed with sickle cell disease receive appropriate follow-up services including counseling, education, access to a medical home, and other support services by supporting CBOs focused on SCD.
The CBO sub-awardee will report annually on the following program objectives:
- Through technical assistance increase the numbers of partnerships. Levels of partnership may include but not limited to: 1) Informal; 2) Collaborative; 3) Formal among hospitals, health systems, state/local public health departments, primary care providers, State Medicaid Agencies, Federally Qualified Health Centers (FQHCs) family organizations, etc.
- Identify and follow individuals with sickle cell disease (SCD) (active and non-active patients/clients). Goals shall be determined based on organizational capacity, SCD population and ability to create partnerships to bolster recruitment.
- Identify individuals living with SCD who are not receiving care in a medical home and assess care quality.
- Link and/or provide individuals with resources, tools and support.
- Assist emerging adults in the transition from pediatric to adult focused health care by establishing a connection with and expanding the number of adolescents and young adults seen by an adult SCD care team within a year of transitioning.
- Provide information on hydroxyurea to those with sickle cell disease.
- Promote individuals reached and served as partners in care and empower patients to become advocates of their own health using the Sickle Cell Self-Efficacy Scale to measure patient empowerment.
- Increase the number of individuals with SCD living in rural and underserved areas receiving care particularly in a medical home.
- Employ a minimum of two (2) Community Health Workers and one (1) SCD Health Educator/Counselor who specialize in the ability to serve individuals with SCD.
- Engage in and implement quality improvement (QI) activities which include: 1) improving education on sickle cell disease and trait and follow-up services for individuals who have been diagnosed with sickle cell disease and sickle cell trait through universal newborn screening programs, 2) increasing access to patient/family-centered medical home, and 3) improving transition activities (e.g., from pediatric care to adult care, education to employment, etc.). And report progress towards achieving these Quality Improvement (QI) project goals.
SCDAA utilized an open competitive bid process to solicit experienced, knowledgeable Sickle Cell Disease Community Based Organizations who are capable of implementing the program objectives. A Request for Proposal (RFP) was issued by SCDAA October 1, 2017 and fifteen organizations were awarded funds to implement program objectives.
AL – SCDAA-Mobile Chapter
Mission: Empowering our clients and families with knowledge through quality comprehensive programs and services.
CA – Sickle Cell Disease Foundation of California
Mission: To provide education and life-enhancing programs and services to individuals with sickle cell disease, to broaden public awareness about sickle cell disease to promote medical research and education to ultimately find a cure.
CA – Cayenne Wellness Center
Mission: To improve the nutritional and mental health of the public. We achieve this mission through education, research, and public awareness initiatives and community outreach programs that promote good nutrition and mental health.
GA – Sickle Cell Foundation of Georgia
Mission: To engage, educate, and energize the community to improve the quality of life for people affected by sickle cell disease.
IL – Sickle Cell Disease Association of Illinois
Mission: Sickle Cell Disease Association of Illinois’ (SCDAI) primary mission is to enhance the quality of life for people with sickle cell disease and their families. To effectively achieve this goal, SCDAI acts as an advocate for improved healthcare and services for sickle cell patients by educating and informing the community through outreach programs.
IN – Martin Center Sickle Cell Initiative
Mission: To aid and enhance the lives of those affected by Sickle Cell and associated disorders by providing client services, patient and family advocacy, and education.
LA – Baton Rouge Sickle Cell Anemia Foundation
Mission: Bringing innovative and creative programs (1) to provide financial and advocacy supportive services to persons diagnosed with sickle cell disease; (2) to provide treatment support to enhance the quality of life for those suffering from sickle cell disease; and (3) to educate the general public about sickle cell disease.
MI – Sickle Cell Disease Association of America, Michigan Chapter
Mission: To maximize the quality of life of individuals living with sickle cell disease.
To enable individuals with sickle cell trait to make informed decisions with respect to family planning. To provide education and testing for the general public.
NC – Piedmont Health Services and Sickle Cell Agency
Mission: To provide outreach, education, screening and case management for people with high-risk health problems.
NJ – The Sickle Cell Association of New Jersey
Mission: In concordance with the mission of the Sickle Cell Disease Association of America “to advocate for and enhance our membership’s ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease.” SCANJ is here to help, educate, and advocate in the fight against sickle cell disease.
NY – Sickle Cell Thalassemia Patient Network
Mission: To improving the quality of life for individuals and families living with sickle cell disease, thalassemia and other hemoglobin disorders through education, advocacy and support interactions.To create a community where we can share our experiences as a collective to improve and impact the education and awareness of sickle cell disease, thalassemia and other hemoglobin disorders.
OH – Ohio Sickle Cell Health Association
Mission: To provide Education, Advocacy and Support to persons and families affected and at-risk for Sickle Cell Disease through effective approaches to Sickle Cell Services.
OK – Supporters of Families with Sickle Cell Disease
Mission: To improve the quality of life for individuals living with sickle cell and thalassemia, children, adults, and their families within the State of Oklahoma, through systematic changes in patient care, policy, education, advocacy, family support, self-sufficiency and awareness.
PA – Children’s Sickle Cell Foundation
Mission: To provide social, educational, and economic support for children with sickle cell disease and their families.
SC – James R. Clark Memorial Sickle Cell Foundation
Mission: To optimize the social, psychological, and physiological well-being of individuals with sickle cell disease and to decrease the incidence of sickle cell disease through genetic screening, counseling, and education.
TX – Sickle Cell Association of Texas-Marc Thomas Foundation
Mission: To enhance and improve the quality of life for individuals and families affected by sickle cell disease and related conditions.