Funding and access to healthcare resources generally remain limited for people with sickle cell disease (SCD). The Indiana Sickle Cell Consortium launched a successful initiative to fund a program for assessing the needs of SCD patients.
Adults with SCD continue to face a lack of funding and health care resources. The Indiana Sickle Cell Consortium (ISCC) is an organization of medical professionals and community members. It collaborates closely with patients and their families to raise awareness of the health disparities in SCD.
After a training event in 2017, about 80 members of the ISCC went to SCD Advocacy Day in 2018. Based on the feedback, it was decided to draft legislation that would provide funds to Indiana residents over the age of 21 who have SCD.
The ISCC then launched a social media campaign to publicize the bill and encourage people to attend the 2019 SCD Advocacy Day. The ISCC also asked the Chair of the House Public Health Committee to hold a hearing on the bill. At this hearing, SCD community members, medical providers, and community-based organization staff testified about the needs of adults with SCD in Indiana.
In April 2019, both the Indiana House and Senate passed House Bill 1354 (HB1354), and Governor Eric Holcomb signed it into law. The bill gives $250,000 per year to help adults with SCD get better access to health care, mental health services, and training for the job market. In addition, the bill directs the Indiana Department of Health to assess the needs of SCD patients in Indiana.
However, parents of children with SCD expressed dissatisfaction with the lack of advocacy efforts for their children. Future advocacy efforts could focus on the needs of children with SCD, such as access to expert hematology care and recommended SCD medications.
Source:
Bloom, E. M., Hampton, K. C., Blackwell, K., Gibson, G. A., Roberson, C., & Meier, E. R. (2022). Ring the Bell for Sickle Cell: Encouraging Advocacy in an Underserved Community. Health Promot Pract, 23(4), 560-562.
Bloom, E. M., Hampton, K. C., Blackwell, K., Gibson, G. A., Roberson, C., & Meier, E. R. (2022). Ring the Bell for Sickle Cell: Encouraging Advocacy in an Underserved Community. Health promotion practice, 23(4), 560–562. https://pubmed.ncbi.nlm.nih.gov/34229474/
