Winning Spirit Newsletter Spring 2008

Region III Meeting Report Out...
By Hal Muschek

On February 28-29, 2008, I had the opportunity to attend the Annual Meeting of the Region III federally-funded Hemophilia Treatment Centers in Alexandria, VA on behalf of the Delaware Valley Chapter. There are 15 hemophilia treatment centers in Region III located in Pennsylvania, Delaware, Virginia, West Virginia, Maryland and the District of Columbia.

Presented first was an update on the continued growth in the total number of patients followed at Hemophilia Treatment Centers in Region III. There are now 3,400 active patients in the region, 5% of whom have inhibitors. We also learned of improvements in sharing information through the UDC (Universal Data Collection).
We were then given a very informative presentation on the diagnosis and treatment of von Willebrand Disease.
In the consumer’s focus group meeting, we discussed merger of all local chapters under the NHF banner to secure better funding and the introduction of Hemophilia Standards of Care Acts in states around the country. Also discussed was a proposal to establish a Standards of Service mechanism to ensure comprehensive services from pharmacies and home care companies.

On day two, we started with a presentation on hemophilic arthropathy. Included were the effects of synovitis in the onset of arthritis in joints, the importance of regular exercise to strengthen muscles that support joints and various surgical procedures to relieve symptoms.

Session two dealt with guidelines for prophylaxis in children with hemophilia. Data was presented showing the advantage of prophylaxis treatment when possible over episodic treatment.

Session three was a presentation on camp experiences for children with bleeding disorders, focusing on programs run in California and West Virginia. These allow nurses, physical therapists and social workers to observe how patients deal with their care, physical limitations and social interactions with their peers outside of a clinical setting.
Session four involved Hepatitis C management. Progression and mortality rates for HCV infections in both HIV positive and HIV negative patients were presented. Success rates with Hepatitis C treatments and new drug treatments coming in the next 5 years were also discussed.

Finally, thanks were expressed to Dr. Barbara Konkle, Sue Cutter, and Carolyn Johnson of Penn Comprehensive Hemophilia Center for the great job they have done running the Region III meeting for the last 12 years.