Beginning in 1988, the Ohio network of Hemophilia Treatment Centers (HTCs) and chapters came together as the Ohio Hemophilia Action Coalition (OHAC) to promote the interests of Ohioans with hemophilia. The Ohio Department of Health (ODH), which provided direct grant funding to hemophilia treatment centers, also provided staff support and coordination for the coalition, which was very successful and productive. Major accomplishments of the network include:
- Restoration of the state budget hemophilia line item in 1992 and regular advocacy in response to biennial budget cuts affecting hemophilia.
- Development and implementation of the Hemophilia Insurance Pilot Program (HIPP): State assistance for individuals with hemophilia who have access to private insurance, but cannot afford the premiums. HIPP served as the model for the Ohio HIV/AIDS Drug Assistance Program and remains an important, but presently underfunded, state safety net program, particularly for the adult bleeding disorders population.
- Adoption of statewide standards of care and treatment for hemophilia and von Willebrand disease in 1998.
In 2002, the state of Ohio eliminated the state hemophilia program, including $1 million in direct funding to support the HTCs and ODH staff dedicated to central coordination and support for OHAC. As a result, the network ceased meeting in an organized way for nearly two years until October, 2004, when the network re-convened to discuss a variety of issues of concern to the bleeding disorders community, most importantly the pending funding cuts to federal and state programs. Based on the serious impact of these cuts, the network committed to meet on a regular basis. It elected officers and took the name of “Ohio Bleeding Disorders Council” (OBDC).
OBDC members share responsibility for all governance and activities. OBDC rotates fiscal agency responsibilities throughout its chapter members. The following organizations are involved with OBDC:
National Hemophilia Foundation Chapters
Hemophilia and Thrombosis Treatment Centers
- Children’s Hospital Medical Center of Akron (Akron and Boardman)
- Cincinnati Children’s Hospital Medical Center
- Nationwide Children’s Hospital (Columbus)
- Dayton Children’s Medical Center
- Northwest Ohio Hemophilia Treatment Center (Toledo)
- Ohio State University Medical Center (Columbus)
- University Hospitals Health System (Cleveland)
- University of Cincinnati Medical Center
- FAMOHIO, Inc.
- HHS Hemophilia Region V-East
The OBDC achieved a number of important objectives:
- Guidelines for governance were adopted and officers selected
- Key issues were identified and advocacy goals were set
- Regular meetings were held to increase awareness of the need for advocacy among consumer and provider committee members
- A strong annual presence at the Statehouse is held through an advocacy day every spring
- Consumer and provider testimony is provided when appropriate
- Stakeholder participation is supported through membership
OBDC members donated many hours of service to achieve these successes, but the HTC staff and Chapter Executive Directors did not have the resources to sustain these efforts until OBDC was able to secure a few advocacy grants, which funded an Advocacy Coordinator to assist with organizing and structuring grassroots advocacy efforts. With support from the PACT Grant, The National Hemophilia Foundation Advocacy Capacity Building Grant, and LEAD Grant support, OBDC accomplished the following over the past three years:
- Inaugural OBDC Statehouse Day held in March, 2008, which was attended by over 80 consumers and providers from throughout the state, who met with 35 legislators. It has grown annually over the years.
- Regional advocacy training sessions were conducted annually with over 400 adults in attendance
- Family advocates, from those training sessions, arranged in-district legislative meetings and received personal assistance drafting letters and communicating with their state legislators
- The Advocacy Coordinator established relationships within the Ohio legislature, monitored legislative activity, and worked closely with other advocacy groups for special health care needs children and families, as well as many other groups, to make the work of the OBDC and the bleeding disorders community known
- OBDC provided input into the following issues, ensuring that the specific needs of the bleeding disorders community were considered
- Increased state funding for the Children with Medical Handicaps (BCMH) – 2017
- Preferred Drug List within the P&T committee in the Department of Medicaid – 2017
- Transition of CSHCN and Title V Children into Managed Care – 2016-17
- Step Therapy Bill Support – 2016-17
- Cap the Co-Pay Bill Support – 2016-17
- Prior-Authorization Bill Support – 2015-16
- Increased state funding for the Hemophilia Insurance Premium Program (HIPP) – 2015
- Medicaid expansion for adults – 2015