Faces of 340B
Joseph Pugliese, President and CEO, Hemophilia Alliance
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 Hemophilia Alliance represents federally funded hemophilia treatment centers (HTCs) with pharmacy programs that either participate in the 340B program or are looking to participate. Thousands of patients living with hemophilia and other rare bleeding disorders rely on the specialized, comprehensive care that they receive at these HTCs.
“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,” says Joseph Pugliese, the Hemophilia Alliance’s president and CEO. 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, Pugliese 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,” he says.
Learn more about the Hemophilia Alliance at its website.