Hemophilia of Georgia Celebrates 40 Years of Service to the Bleeding Disorder Community
Horizons in Hemophilia, January 2013
By Trish Dominic, CEO
When Hemophilia of Georgia was founded in 1973, there were no Hemophilia Treatment Centers in Georgia. Today, Hemophilia of Georgia provides funding to HTCs in Atlanta, Augusta, and Savannah. Through these centers, children and adults who have hemophilia or another inherited bleeding disorder receive specialized comprehensive care.
When Hemophilia of Georgia was founded in 1973, children who had hemophilia didn’t go to summer camp. Now, Camp Wannaklot is the largest single-state bleeding disorder camp in the country. This summer, Camp Wannaklot will celebrate its 20th season and will welcome 150 campers and 100 volunteers.
When Hemophilia of Georgia was founded in 1973, a person having a bleed had to travel to a hospital for treatment and kids were frequently hospitalized for long periods of time. Now, children who are on prophylactic treatment rarely experience bleeds. When they do, infusion training from Hemophilia of Georgia nurses means they can be treated quickly at home.
When Hemophilia of Georgia was founded in 1973, the newly-developed clotting factor concentrate cost about $7,000 per year. Later, it was discovered that this medication was responsible for transmitting viruses including HIV and hepatitis C. Many in the bleeding disorder community were infected and many lives were lost. Today, factor concentrate is free from viruses but it costs an average of $100,000 per year.
When Hemophilia of Georgia was founded in 1973, treatment for bleeding episodes had to be administered by a physician. Now, Hemophilia of Georgia’s pharmacies ship thousands of units of clotting factor directly to clients’ homes all over the state each year.
When Hemophilia of Georgia was founded in 1973, $50,000 in state funding paid for clotting factor for the uninsured as well as the salary of a nurse. Over the years, that funding grew to almost $1.8 million to cover the increased cost of factor. Today, $400,000 in state funding pays for insurance for those with pre-existing conditions.
Virtually everything about hemophilia care has changed since 1973. What hasn’t changed is the commitment of people to work together to make things better. A group of families joined together many years ago to build an organization that would offer help, knowledge, hope, and a sense of community. Today, Hemophilia of Georgia remains committed to continuing to improve the lives of people affected by bleeding disorders. As always, it takes more than medicine.
We invite you to join the celebration during 2013 by sharing your stories. What has improved over the years? How has being involved with the people who make up Hemophilia of Georgia impacted your life? If you would be willing to share your story, please email mail@hog.org or talk to your social worker. Thank you.