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:
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
Other Hemophilia-Related Organizations
· FAMOHIO, Inc.
· HHS Hemophilia Region V-East
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).
· Continued engagement with the Ohio Department of Medicaid (ODM) on multiple initiatives affecting patients with a bleeding disorder. These include advocacy to the Pharmacy and Therapeutics Committee (P&T) on drug coverage under ODM’s unified preferred drug list (PDL), discussions regarding ODM’s move to a single Pharmacy Benefits Manager (PBM) for all Medicaid populations, and the reprocurement of Ohio’s five managed care contracts;
· Introduction and passage of pro-patient legislation related to PBM conduct, copay accumulator, non-medical switching of drugs on a formulary, and protections for patients with preexisting conditions;
· Advocacy to support current and/or increased funding in the State Operating Budget for patients with bleeding disorders. Key funding sources include the Bureau for Children with Medical Handicaps (BCMH), the Hemophilia Insurance Premium Payment Program (HIPP), and Medicaid funding;
· Educating lawmakers on policy considerations for individuals living with a bleeding disorders and developing additional legislative champions;
· Engagement on any other legislative or administrative issues that impact patient access, pharmaceutical drug coverage, Medicaid, or other issues important to patients living with hemophilia.
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