If you have hemophilia, multiple sclerosis or any number of other hard-to-treat diseases, the cost of your medications alone could reach into six figures, depending on your insurance coverage. “It’s roughly $15,000 a month, and from that I’m lucky to have good insurance so we have good co-pay structure, co-insurance,” said Nick Vizzoca, whose 13-year-old […]
The countdown to the launch of the new online Health Insurance Marketplace is on. Are you ready? If you, like many Americans, have questions about what the Marketplace is and what it does, there are excellent resources available to help answer these questions. Here are some of the most frequently asked questions: “The Marketplace” The […]
Washington, DC – A bill to protect access to medically necessary treatments for patients with chronic, disabling, and life-threatening conditions would not significantly increase medical insurance premiums according to a study released today by the Coalition for Accessible Treatments. The Coalition, composed of professional medical associations and patient organizations, commissioned the study, which was conducted […]
Hemophilia Treatment Centers (HTC’s) are federally-funded facilities that offer comprehensive, multi-disciplinary services in a single setting. I likened them to one stop shopping: you have your physician, nurse, social worker, and physical therapist all on the same team with you, the patient or caregiver, as the star athlete. Today, there are 144 federally-funded treatment […]
I think we can all agree that factor is an expensive drug. The Explanation of Benefits (EOB’s) that arrive in the mail each month are horrifying to look at. The ones we get are on the far end of the “oh-my-goodness-that’s-a-lot-of-money” spectrum. And those are just the ones that include Thomas’s factor supply for scheduled […]
Andy Matthews discusses advocacy issues that he feels are important.
For some, the teenage years are the time to dream. But Leland Smith, who has severe hemophilia A, has always had to be firmly grounded in reality. “[Careers] like movie star or athlete aren’t even in the books,” he says wistfully. Leland’s hemophilia comes with a complication called an inhibitor: a resistance to the medication […]
Watch this video to understand why comprehensive care is vital for people in the hemophilia community to live a long, healthy life. You will hear from individuals who have directly been impacted by comprehensive care and an individual who works in one of the centers and has seen first hand the success of comprehensive care.
Washington, DC: President Barack Obama held a backyard discussion on healthcare reform at the home of Hemophilia Federation of America’s President, Mr. Paul Brayshaw. Paul, an individual with Hemophilia is a resident of Falls Church, VA. He opened the forum with a statement regarding the positive impact of the Affordable Care Act as it relates to individuals […]
The Forbes family shares their story of visiting the Oval Office.
Assisting and Advocating for the Bleeding Disorders Community