The Texas Legislature gave a resounding “yes” to people with bleeding and clotting disorders in the state this month when it passed S.B. 1566, responding to a proposal initiated by local and national bleeding disorders advocates to create a statewide Bleeding Disorders Advisory Council. The bill was then sent to Gov. Rick Perry (R) for his signature. He has 10 days to sign it, veto it, or allow it to become law without a signature. If the bill becomes law, Texas will be the second state this year to create an advisory body dedicated to addressing the myriad health care issues faced by people with bleeding and clotting disorders. Iowa passed similar legislation in March.
The Texas and Iowa proposals are part of the National Hemophilia Foundation’s (NHF) Bleeding Disorders Advisory Board Campaign. Through this campaign, NHF, local chapters, clotting factor manufacturers and other allies are promoting legislation to protect access to quality healthcare for people with bleeding and clotting disorders by establishing state-recognized bodies of consumer representatives and medical experts that can advise state legislators about important issues. Legislation was initially introduced in three states: Iowa, Massachusetts and Texas. The Massachusetts House Public Health Committee has set a hearing date for June 13th for the community to comment on its advisory board proposal.
Successful passage of S.B. 1566 by the Texas Legislature was the result of the dedicated efforts of many people. In particular, it was spearheaded by the Lone Star Chapter of NHF and Texas Central Hemophilia Association, Inc. Working together, the two NHF chapters visited legislators, made calls, wrote letters and testified at committee hearings.
Progress is also continuing in Pennsylvania to pass a “Hemophilia Standards of Care” bill to preserve access to the full range of treatment and services needed by people with bleeding disorders. Efforts to support the legislation are being spearheaded by the Delaware Valley and Western Pennsylvania Chapters of NHF. Currently, the bill resides with the insurance committee of the Pennsylvania House, which is expected to take action within the next couple of weeks.
NHF is reaching out to chapters and associations that want to advocate for advisory boards and standards of care throughout the country. For more information on the program, please contact Ruthlyn Noel, NHF Manager of Public Policy: 212.328.3730 or e-mail firstname.lastname@example.org.