March 14, 2018—March is Bleeding Disorders Awareness Month, a time for patients, their families and friends, and their care providers to raise awareness of a relatively rare but serious set of diseases that require specialized care.
Patients with hemophilia – a rare, chronic bleeding disorder – require a lifetime of infusions of clotting factors that provide essential blood proteins. These treatments are complex and costly to provide, with average annual care costs running in the hundreds of thousands of dollars.
The event gives us at 340B Health a perfect opportunity to introduce the newest profile in our Faces of 340B video series. Hemophilia Alliance President and CEO Joseph Pugliese is a dedicated and passionate advocate for federally funded hemophilia treatment centers (HTCs) with pharmacy programs that either participate in the 340B program or are looking to participate.
Joe recently sat down with us to discuss the thousands of patients living with hemophilia and other bleeding disorders who rely on the specialized, comprehensive care that they receive at these HTCs. The 340B program plays a vital role in ensuring that this care continues.
“The 340B program allows hemophilia treatment centers in the U.S. to fund the clinical care model that is the standard of care around the world,” Joe says. Not only does the program help preserve this comprehensive set of services, it also helps pay for hundreds of full-time health professionals that deliver high-quality, compassionate care to patients living with bleeding disorders. That is a major reason why Congress included HTCs among the facilities that are eligible to participate in 340B.
The benefits of this arrangement are clear; the comprehensive care model has been shown to reduce patient mortality and morbidity by 30 to 40 percent and helped many patients return to work and school with good quality of life, Joe says. “It’s ironic, but a well-run hemophilia treatment center’s goal is to really minimize the need for the patient to be seen at the clinic.”