Our Year of Changes and Successes
Horizons in Hemophilia, December 2010
By Trish Dominic, CEO
This past fiscal year brought many changes to our organization including health care reform, Beacon Pharmacy, and the departure of our Emory/CHOA Medical Director, Dr. Tom Abshire. Once again the Board, staff and volunteers kept this organization moving forward with an eye on the mission and vision of the agency. Here are a few of the highlights of the fiscal year which ended June 30:
Comprehensive Care
- We said farewell to Dr. Tom Abshire and wished him well in his new position as Vice President of Clinical Research at the Wisconsin Blood Center. We have been working with Drs. Pete Lollar and Bill Woods to identify a new medical director for the Emory/CHOA program.
- The agency funded treatment centers at Emory/CHOA (pediatrics and adults), Medical College of Georgia (pediatrics and adults) and Backus Children’s Hospital (pediatrics only). Our total funding for these centers was $1,183,800.
- The agency continued to serve as the regional core center for both the Centers for Disease Control and Prevention and the Maternal and Child Health Bureau, providing oversight to hemophilia treatment centers in four states.
- The largest comprehensive care center in Georgia is Emory/CHOA, reporting 858 active patients for the Hemophilia Data Set in 2009.
Research
- Our total funding in support of research was $450,500. The majority of this funding went to four junior researchers: Drs. Amy Dunn and Shannon Meeks at Emory, Dr. Miguel Escobar at the University of Texas Health Science Center and Dr. Michael Callaghan at Wayne State University in Detroit.
- Dr. Pete Lollar, our endowed research chair at Emory, continues to work on safer and more effective products to treat hemophilia.
Advocacy
- Our lobbyist since 1985, Rusty Kidd, was elected to the Georgia House of Representatives. After meeting with several lobbyists, we chose Helen Sloat and Stan Jones of Nelson Mullins. Both have been working with us on our uninsured funding, Medicaid CMOs and Hemophilia Day at the state capitol.
- In March the Patient Protection and Affordable Care Act passed, offering insurance for many more Americans than ever before, especially those with a pre-existing condition. HoG staff members and clients attended Washington Days in February, 2010 advocating for the health care reform bill, elimination of lifetime caps and increased funding for treatment centers.
Programs and Services
- 141 children and teens attended Camp Wannaklot, the largest single state camp for people with bleeding disorders in the U.S.
- The agency hosted 24 client dinners, two Family Camp weekends, a Teen Retreat and a Women’s Retreat.
- This year 13 teens participated in our Youth Leadership Initiative and prepared a program for Camp 2010 to inform others about health care reform.
- Our nurses and social workers had contact with 1,252 clients, either through clinic, home visits, phone calls, or client events. They conducted 1,146 home visits, 1,429 clinic visits and 2,911 phone calls with our clients.
- We added 83 new clients to our registry.
Pharmacy
- The agency opened Beacon Pharmacy in January in order to continue to serve our Medicaid clients.
- We added on-line ordering and an order reminder system for Beacon Pharmacy clients.
- The agency provides 24 hour access to a pharmacist.
- HoG served as a contract pharmacy for University of Miami and the University of South Florida.
- The HoG pharmacy continued to serve as the World Federation of Hemophilia’s contract pharmacy, receiving over 15,000,000 units of donated product for other countries.
Financial
- Through our state funding, the agency provided $1,600,000 worth of clotting factor to uninsured people with bleeding disorders.
- Through the generous support of Baxter and Wyeth, another 49,782 units of clotting factor were donated for uninsured clients.
- The agency conducted its first Trot to Clot Walk, participated in Macy’s Shop for a Cause, held the 27th Hit 'Em for Hemophilia Golf Tournament, and continued the commemorative brick walk campaign for Camp Wannaklot.
It is always nice, in the cold of winter and the busy holiday season, to stop and write this article and to remember all the events and people that have touched our work and lives this past year. It was an exciting year filled with many new friends, activities and relationships. As the calendar year draws to a close, thank you for your support and generosity. May the new year bring you and yours joy and peace and may we see you often throughout the new year.