Hemophilia Treatment Staff Come Together to Discuss Care and Challenges

By Michelle Putnam, Associate Director of Research and Advocacy

It is said that great minds think alike. Clearly, the person who said that never attended a State Hemophilia Meeting. Each year, the great minds of Georgia’s hemophilia treatment centers come together to share insights into hemophilia care. The specialized and comprehensive care provided by hemophilia treatment centers rely on a wide variety of providers, and each brings different and very valuable insight into how centers can better serve patients and improve access to care.

This year, the meeting took place in Stone Mountain, GA over the course of two days. Much of the initial discussion included education around new insurance changes under the Affordable Care Act and how these changes impact people with bleeding disorders. Michelle Putnam and Michelle Fitzwater, both from Hemophilia of Georgia, gave a brief overview of how the Health Marketplace works and how consumer protections under the Affordable Care Act help people with bleeding disorders. Afterwards, Hemophilia of Georgia social workers Gail Day and Robert Gillespie provided insight into the details of new insurance plans and changes in Hemophilia of Georgia’s Bleeding Disorder Assistance Program.

The group then switched tracks and discussed treatment issues. Dr. Trent Spencer, from Emory, gave updates on genetic treatments for hemophilia A and new research developments in gene therapy. In addition to describing new studies being conducted at several centers in the Southeast, he provided some perspective into how advanced treatment in the United States compares to the rest of the world. Specifically, 70% of hemophilia A patients worldwide are not treated.

Treatment of hemophilia can come only after successful diagnosis and education. Libby Malphrus, a Certified Genetic Counselor at Children’s Hospital at Memorial University, gave a wonderful presentation on the importance of genetic counseling in hemophilia care and diagnosis. Her work in teaching patients about the genetic components of bleeding disorders goes a long way to ensure that new and prospective parents have the tools and information they need to adequately care for their families.

Suzanne Trumbower, MS PT, of Children’s Healthcare of Atlanta, brought a valuable perspective by updating the group on new physical therapy developments in mitigating the problems of hemophilia. Her insight into prophylaxis regimens showed that new treatments have helped young people with bleeding disorders have a positive relationship with exercise and physical activity. Her presentation showed that physical therapy in the bleeding disorder community has come a long way in a relatively short period of time thanks to new treatment regimens.

The group got a new perspective from Dr. Sarah O’Brien, a pediatric hematologist at Ohio State, who spoke about the difficulties of diagnosing and managing women with bleeding disorders. Her tips and updates on interacting with young women in a clinical setting will not only help with diagnosing women with von Willebrand Disease and other platelet disorders, but will also help with continuously managing these conditions.

Overall, this year’s state meeting focused on change. Treatment is changing, diagnostic tools are changing, and the insurance landscape is changing. In order to ensure these changes continue to be positive and take the bleeding disorder community to new heights, it is important that the great, diverse minds of our community tackle new challenges together.