Governor Issues Executive Order to Establish Hemophilia Study Panel

Horizons in Hemophilia, August 2009 

By Jeff Cornett RN MSN, Director of Training, Research, & Advocacy

On July 29, 2009, Governor Sonny Perdue issued an Executive Order appointing a Hemophilia Study Panel. This action follows his May 11 veto of Senate Bill 159 The Hemophilia Advisory Board Act. In a statement accompanying his veto, the governor said, "I will issue an Executive Order to establish an advisory board similar to the one contemplated by SB 159." While there are similarities between the legislation and the Executive Order, the differences are substantial and troubling to the bleeding disorder community.

Senate Bill 159 was sponsored by Senators Johnny Grant of Milledgeville, Renee Unterman of Buford, and Don Thomas of Dalton. It was modeled on draft legislation from the National Hemophilia Foundation and similar bills that had passed in Iowa, Texas, and Illinois. The bill passed the Senate by a unanimous vote on March 3. Representative Ed Rynders of Leesburg championed the bill in the Georgia House where it passed with only three "nay" votes on March 20.

The Hemophilia Advisory Board Act (SB 159) directed the head of the Division of Public Health in the Department of Human Resources, in conjunction with the state insurance commissioner, to set up an independent advisory board. The volunteer board would have been made up of a hematologist, nurse, and social worker who treat people with hemophilia and other bleeding disorders and representatives from a hemophilia treatment center, a hemophilia non-profit, and an insurance company. The board's membership would have included persons affected by bleeding disorders, with at least one member with hemophilia, one member who was a caregiver of a person with hemophilia, and one member who was a person with a bleeding disorder other than hemophilia or who was a caregiver of a person with a bleeding disorder other than hemophilia. Each year the board would have recommended ways the state could better meet the needs of the bleeding disorders community, including providing better access to health insurance, enacting standards of care, and increasing awareness of proper treatment.

The Executive Order issued by Governor Perdue differs from the legislation passed by the General Assembly in several important respects. The first is that there is now only one person with a bleeding disorder on the Study Panel. Hemophilia of Georgia believes strongly that any group that seeks to advise on bleeding disorder issues should have, at a minimum, a person with hemophilia, a parent of a child with a bleeding disorder, and a woman with von Willebrand Disease. The needs and issues faced by these three groups can differ considerably.

Another difference can be found in the qualifications for the health care professionals on the Panel. SB 159 mandated that the physician, nurse, and social worker members be "licensed, practicing, and currently treating individuals with hemophilia and other bleeding disorders and [specialize] in the treatment of these individuals." The governor's Executive Order removes these stipulations. The Executive Order also merged two positions - a representative from a Hemophilia Treatment Center and a representative from Hemophilia of Georgia. Instead of representatives from both, there is to be a representative from one or the other. Hemophilia of Georgia has recommended qualified people to fill these and the other positions and willing be closely following the appointment process.

Whereas SB 159 set up an Advisory Board with a three-year term, the governor's Executive Order sets up a Study Panel that will begin meeting in October 2009 and be disbanded on June 30, 2010. With only nine months to structure itself, set an agenda, and prepare a report, the Panel will be hard pressed to provide recommendations on all of the areas with which it has been charged.

One change made by the governor does have potential benefits. The Study Panel will include a member from both the House and Senate Health and Human Services Committees and a representative from the Office of Planning and Budget. Hopefully the involvement of members of the General Assembly will help move along any proposed legislation.

Hemophilia of Georgia continues to advocate for the state to work constructively and proactively to meet the needs of people with bleeding disorders. After so much work by the community and so much support in the General Assembly, the veto of SB 159 by the governor was a shocking blow. It is our hope that the Study Panel established by the Executive Order will be able to accomplish some of the goals set in the original legislation.

Text and legislative summary for SB 159:
https://www.legis.ga.gov/legis/2009_10/sum/sb159.htm 

The governor's statement accompanying his veto of SB 159:
https://gov.georgia.gov/00/press/detail/0,2668,78006749_139486062_140372354,00.html 

The governor's Executive Order creating the Hemophilia Study Panel:
https://gov.georgia.gov/vgn/images/portal/cit_1210/50/44/14665903907_29_09_04.pdf