A New Year Awaits Us - 2014 Remembered
By Trish Dominic, CEO
As I write my final year-end article for the newsletter, I can’t help but think of the cold days that lie ahead and the fact that we’ll be celebrating a very special new year at HoG; a year that will bring new leadership to an organization that has never strayed from its mission and, because of you, has had outstanding vision.
This year, our social workers helped enroll people in the insurance exchanges. People with bleeding disorders who in the past had no insurance, received their clotting factor through our state contract, and were able to attend a Hemophilia Treatment Center in Georgia via this funding. Sixty-seven individuals chose to enroll in the exchange and the savings to the state was over $1 million. We caught the attention of many state agencies in Georgia and the Governor for this accomplishment.
HoG continued to support research in the amount of $1.8 million. This funding supported factor IX gene therapy at St. Jude Children’s Research Hospital, four physician-researchers, two Judith Graham Pool fellows and research grants at Emory Midtown, Emory/CHOA and Georgia Regents University. St. Jude’s factor IX gene therapy has enabled four of the seven participants to discontinue prophylaxis and remain free of spontaneous hemorrhage, while resuming vigorous physical exercise. The other three participants have increased the interval between infusions.
1,324 HoG clients had contact with a HoG nurse or social worker through clinics, client events, home visits and phone calls.
Our pharmacy shipped 4.5 million units of donated clotting factor to 34 unique countries on behalf of the World Federation of Hemophilia. HoG continued its Twinning Program with Bolivia. The hemophilia association in Bolivia has procured funding for lab equipment for two children’s hospitals to provide diagnostic testing for people suspected of having a bleeding disorder and obtained support from the Bolivian Minister of Health to provide education about bleeding disorders to doctors and nurses in the country.
Camp Wannaklot celebrated its 21st anniversary this year! A total of 111 campers spent the week at Camp Twin Lakes with 86 volunteers and staff present. For one week each year, kids with bleeding disorders have an opportunity to be with others who share their disorder and to enjoy the challenges of wall climbing, learning to swim and learning to infuse. The woods echo with their shouts of triumph and joy and many life-long friendships are formed during this special week.
We held our annual Hemophilia of Georgia Day at the state Capitol with an information table for legislators. Seven clients and three staff members attended NHF Washington Days to gain Congressional support for H.R. 460. The Patients' Access to Treatments Act caps the amount an insurance company can charge people for drugs on a specialty tier.
Our new development leaders, Kirstin Downie, Director of Development, and Kelli White, Special Events/Volunteer Coordinator, worked with Lorraine Scollan, Development Coordinator, to ensure our 32nd Annual Hit 'Em for Hemophilia golf tournament was a huge success. A total of 183 golfers participated in this event, helping us to raise $110,000 for research. Three “Trot to Clot” run/walks took place in Augusta, Stone Mountain, and Lawrenceville, raising $53,395 with the help of 331 participants and 76 volunteers.
HoG serves as a contract pharmacy for three treatment centers in Florida, the University of Miami, the University of South Florida, and Nemours Children’s Clinic. This past year, we worked with the chapters and treatment centers in Florida to convince the Florida legislators to allow the treatment centers to participate in Florida Medicaid reimbursement for their 340B pharmacy programs. We were successful in this endeavor and we await a revision in the Medicaid hemophilia program. HoG uses revenues derived from this contract pharmacy work to support the Greater Florida Chapter of the National Hemophilia Foundation and its work with all the treatment centers in Florida.
I hope to see many of you in the coming months and would like to take this opportunity to wish you and yours a new year filled with joy, peace and love. I have just one last request to make - and that is that you consider making a year-end gift to HoG. Thank you all for the past 30 years, my wonderful job and your support.