What is the hemophilia treatment center (HTC) model of care?
HTCs provide patient-centered, comprehensive care to assess and provide treatment for the long-term complications of bleeding disorders throughout an individual’s life. The HTCs bring together a multi-disciplinary team of providers including:
- Physical therapists
- Social workers
- On site laboratory
- Other providers (i.e., genetic counselors, nutritionists, orthopedists)
The HTC care team understands how best to interact with patients and their families to impact behavior and achieve optimal health outcomes.
HTCs improve patient health outcomes
Studies from the CDC have shown that mortality and hospitalization rates are 40% lower for HTC patients than in those who are not seen at an HTC, despite the fact that more severely affected patients are more likely to be seen in HTCs.
The federal network of HTCs was established in the mid-1970’s by the Office of Maternal and Child Health (now known as the Maternal and Child Health Bureau [MCHB]) of the Health Resources and Services Administration (HRSA). HRSA recognized that individuals with bleeding disorders had difficulty obtaining quality care due to the rarity and complexity of the conditions. The federal HTC network now includes approximately 140 specialized centers of excellence across the country that receive federal grants from HRSA and the CDC. HTCs are also eligible to participate in the 340B drug discount program and many HTCs have pharmacy programs that dispense clotting factor to their patients.
The National Bleeding Disorders Foundation developed the Medical and Scientific Advisory Council (MASAC) to advance clinical care and promote research. MASAC establishes quality of care guidelines for the treatment of hemophilia and other bleeding disorders.
These recommendations set the standard of care around the world and are referred to by an international array of physicians, medical schools, pharmacists, emergency room personnel, and insurance companies and address a wide array of treatment issues, such as, standard of care for persons affected by bleeding disorders, recommended therapies and emergency room treatment guidelines. The committee consists of scientists, hematologists other treatment professionals, US government agencies and patient representatives that are internationally regarded as experts in the broad field of bleeding disorders research and care, AIDS, hepatitis, other infectious diseases and blood safety.
A few of MASAC’s recent, relevant, and often referenced recommendations are listed below.