In January 2015, Indiana State Representative Gregory Porter, working with MCSCI President, Gary A. Gibson, filed House Bill 1329 in the Indiana General Assembly. This piece of legislation was intended to add specific requirements to the Sickle Cell program of the Indiana State Department of Health (department). The bill required the Indiana State Department of Health (ISDH) to establish Sickle Cell Disease centers in various regions of Indiana. It was also intended to require ISDH to conduct a study concerning certain aspects of sickle cell disease and treatment.
With the assistance of representatives from the Indiana Minority Health Coalition, MCSCI’s President convinced the Chair of the Public Health Committee to give the bill a hearing. The hearing took place in the Indiana Statehouse on January 20, 2015. In addition to testimony from Mr. Gibson and others, six (6) MCSCI clients spoke about the need for passage of the bill. The bill passed out of the Public Health Committee with unanimous consent. However, it did not survive its trip through the State House and Ways (Budget) Committee.
In spite of the bill’s failure to pass the entire legislature, the attention generated by H.B. 1329 raised enough concern within the legislature and ISDH to generate additional funding for the state’s Sickle Cell Program budget. ISDH issued a request for proposals for “Sickle Cell Broad Scope Services” in the summer of 2015. MCSCI provided a proposal to provide emergency department Sickle Cell education services. This project was selected because of long-standing concerns about emergency department care within the SCD patient community. MCSCI leadership believes that improvements in this area will positively impact the SCD patient’s quality of life.
The proposal was accepted by ISDH and MCSCI was awarded a grant to perform these services under the title of “Emergency Department Sickle Cell Education Project.”
Also, on November 24, 2014, the Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB) announced a grant opportunity for fiscal year (FY) 2015 for the Sickle Cell Disease Newborn Screening component of the National Hereditary Blood Disorders Program. The purpose of this component is to support the efforts of community-based organizations (CBOs) Like Martin Center Sickle Cell Initiative (MCSCI) to enhance follow-up services for sickle cell patients and to support sickle cell disease counseling, education, referrals to a medical home, and other support services.
This grant of the Sickle Cell Disease Newborn Screening Program (SCDNBSP) is intended to enhance CBO’s efforts to provide follow-up services for sickle cell patients and support sickle cell disease counseling, education, referrals to a medical home, and other support services. The goals of the SCDNBSP are for a national sickle cell organization, in part by working with regional and local sickle cell community-based organizations (CBOs) to: 1) create a national effort to develop, implement, and maintain a national strategy to identify and assess the care quality and outcomes of individuals with sickle cell disease in order to assure access to comprehensive care; 2) increase the use of sickle cell educator/counselors (e.g., community health workers); and 3) increase the number of patients with care coordination, follow-up and referral to medical homes for sickle cell patients. The sickle cell educator/counselors will provide care coordination to sickle cell patients in communities by educating patients about sickle cell, linking patients to medical homes and assisting them with other resources in the community to address their health care quality and outcomes. A regional approach will be used for the Sickle Cell Disease Newborn Screening Program. The Sickle Cell Disease Treatment Demonstration Program (SCDTDP) uses a regional model, and the applicant is expected to work collaboratively with the SCDTDP awardees.
The Sickle Cell Disease Association of America (SCDAA), of which MCSCI is a chapter member, reached out to its chapters in five regions of the United States to assemble a team that would work on this project. SCDAA, in collaboration with both its members and non-member CBO’s, crafted a multifaceted national program to identify patients with sickle cell disease and link them to high quality care within their communities. The program will utilize the collective impact model strategy to create outcomes and solutions for better access to care within five key regions throughout the US.
SCDAA was awarded approximately $2.7 million annually for two (2) years to serve as the National Backbone Organization for the HRSA Sickle Cell Disease Newborn Screening Program. As the national backbone organization SCDAA will work with community-based organizations across the country to implement a strengthened approach to care, collective impact and strategic activities within the Sickle Cell community. Primary components of the collective impact model include:
- Support a national structure
- Develop and implement a common agenda.
- Provide continuous communication.
- Conduct reinforcing activities with community based-organizations (CBOs)
- Develop and implement a shared measurement system.
MCSCI will be working as a subcontractor to the Sickle Cell Disease Association of Michigan (SCDAM) on this project. SCDAM is a subcontractor to SCDAA National.
These two grants will provide MCSCI with the opportunity to create meaningful impact for those living with Sickle Cell in central Indiana. We are looking forward to doing just that!