Inhibitors in Focus Throughout the HFA Symposium
HFA Symposium (Las Vegas, April 2, 2016) – The HFA Symposium featured an inhibitor track that kept inhibitors in focus throughout the meeting. In parallel sessions, Sue Geraghty provided an overview of joint disease progression, how to prevent damage, standard treatments for pain, and potential surgical procedures for chronic joint problems while Dr. Dave Robinson reported on findings from a focus group exploring the impact of an inhibitor on families and the experiences around diagnosis of the inhibitor and treatment. Dr. Shannon Meeks provided a very detailed talk on inhibitor development, spanning from how often they occur to what risk factors for inhibitors have been identified. She described many of the recent scientific studies that have shed light, and provided often conflicting information, about the risk of inhibitors including the RODIN and SIPPET studies. Dr. Robert Sidonio provided an update on future approaches to inhibitor treatment, highlighting several new molecules that are in currently or will soon be in clinical trials, as well as other studies being done to investigate inhibitor development. On Saturday, Dr. Bobby Tran led a session that reviewed inhibitors from A-Z from his own personal perspective as a hematologist who developed inhibitors, starting with inhibitor development, differences in symptoms and treatment for patients with inhibitors, immune tolerance, and also highlighting economic, social, and emotional issues. He provided some key pearls from his own experiences, including recommendations to learn self-infusion early (he learned in his 20’s), keep in touch annually with an HTC to establish a “baseline” even if you seek care with a local hematologist, be prepared for emergency room visits, stay hydrated to keep your veins up, adapt HFA slides for schools and college toolkit materials and develop an IEP or 504 plan if necessary, and be an educated consumer about insurance plans.