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8607 Roberts Drive, Suite 150 Sandy Springs, GA 30350-2237

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8607 Roberts Drive, Suite 150 Sandy Springs, GA 30350-2237

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2011 – A Year of Many Challenges and Successes

Published December 13, 2011

 

Horizons in Hemophilia, December 2011

TrishBy Trish Dominic, CEO

When I look back upon our fiscal year that ended in June 2011, I think of how fast our world is changing--health care reform, social media, government financial woes, our demographics, and with each election, a parade of new government leaders to educate about bleeding disorders.  The Hemophilia of Georgia Board, staff and volunteers are committed to meet the challenges these changes bring.  I am pleased and proud to tell you about this past year’s successes.

Programs and Services

  • HoG provided programs, support and services to 1,478 clients.
  • Our nurses worked with 764 clients to review Emergency Action Plans, completed home infusion training with 7 clients and 5 family members, and educated more than three-fourths of our clients.
  • The social workers provided education about consumer issues to 813 clients and had one-on-one sessions with 216 teens about managing their bleeding disorder and transitioning to adult care.
  • 141 children and teens attended Camp Wannaklot, making it the largest single state camp for people with bleeding disorders.
  • The agency hosted 24 client dinners, two family camps, Holiday Happenings at Callaway Gardens and a Women’s wellness day.  Over 300 clients attended these events.
  • Our newsletter, Horizons in Hemophilia, converted to a monthly on-line publication and subscribers increased by 20%. 
  • In addition to our Facebook page, HoG launched a blog in May of 2011.

Research

  • HoG contributed $605,000 in research, funding three junior researchers, enhancing the infrastructure of the American Thrombosis and Hemostasis Network’s (ATHN) research data base, and supporting research clinicians at Emory/CHOA and Emory Midtown.
  • Through the National Hemophilia Foundation’s Judith Graham Pool Fellowships, the agency funded two research fellowships over the next four years at a cost of $200,000.  These Fellowships were in honor of Bill Riley, Jr. and Janet and Jim Glass, volunteers who have given of themselves in many capacities over the past 25 years.

Advocacy

  • The Department of Community Health proposed to eliminate funding for HoG to provide factor to the uninsured bleeding disorder community. Through outstanding support from our lobbyists and our clients at Hemophilia Day at the State Capitol, the General Assembly voted to provide $698,683 to HoG to pay for the following: insurance premiums through the Pre-Existing Condition Insurance Plan; insurance premium assistance; clotting factor for those waiting to qualify for insurance; and outreach nursing, social workers and pharmacy support.
  • The General Assembly also passed The Hemophilia Advisory Board bill that had previously passed but was vetoed by Governor Purdue. The bill was signed by Governor Deal in May and directs the Department of Public Health to set up a board to make recommendations to the governor and General Assembly on standards of care and treatment for people with bleeding disorders. Having such standards of care helps ensure that people with bleeding disorders will receive care and treatment based on medical criteria as opposed to financial criteria.

Comprehensive Care

  • Shawn Jobe, M.D., PhD, was named the new Clinical Director of the Emory/CHOA Hemophilia Program.  Dr. Jobe replaces Dr. Tom Abshire who moved to Wisconsin.
  • The agency supported treatment centers at Emory/CHOA (pediatrics and adults), Georgia Health Sciences University, formerly MCG, (pediatrics and adults), and Backus Children’s Hospital (pediatrics). Our funding for these centers was $1,605,894.
  • The agency served as a regional core center for Region IV South for the Maternal and Child Health Bureau (MCHB) and the Centers for Disease Control and Prevention (CDC) providing oversight and technical assistance and training to hemophilia treatment centers in four states.
  • The largest treatment center in the southeast is Emory/CHOA which served 872 active patients in calendar year 2010.

Pharmacy

  • Our HoG and Beacon Pharmacies shipped 2,197 packages of clotting factor this year.
  • The agency continued to serve as a contract pharmacy for the University of Miami and the University of South Florida’s bleeding disorder programs.
  • The World Federation U.S. received 49,000,000 units of donated clotting factor that HoG shipped on their behalf to 47 countries.

Fundraising and Volunteers

  • The agency was most fortunate to have 157 volunteers who donated 7,820 hours to our work.
  • The Development Department held two Trot to Clot walks that raised $35,000 for HoG’s programs and also held the 28th Annual Hit ’Em for Hemophilia Golf Tournament which raised over $230,000 for research.

As I write this article in late November, the day has dawned cold and rainy with a chance of snow.  However, I cannot help but think of all the people who touched our lives this past year, bringing their warmth and passion to our work.  Words cannot begin to express my heartfelt thanks for your commitment, encouragement and loyalty.  As this season of giving draws near, thank you for the gifts you give all year long and may you and yours have a peaceful new year.