Treatments for people with a primary immunodeficiency disease, or “bubble boy disease,” may soon become more accessible and affordable. If signed into law by President Obama, a bill passed by the House and Senate last week would fund at-home drug therapy for these patients.
Patients with primary immunodeficiency diseases can’t fight everyday germs and viruses. To obtain the antibodies needed to stay alive, they require frequent hospital visits for intravenous immunoglobulin treatments. But hospitals harbor potentially deadly germs and are often a long way from home.
Last week, the House and Senate passed the Medicare IVIG Access Act, which provides for a three-year pilot program with at-home infusions paid for by Medicare, ABC News reported. Previously, the infusion drugs were covered, but not the ancillary services, including nursing.
Dr. Michael Blaese, medical director of the Immune Deficiency Foundation, called that omission a “quirk,” and said the treatments are essential. “If they don’t get it, they get infected, and they die of pneumonia, meningitis, septicemia,” he told ABC News. Or they suffer from lifelong lung damage, he said.
In the United States, about 250,000 people have primary immunodeficiency diseases. The bill was reportedly inspired by the late David Vetter of Texas, the original “boy in the bubble” who lived in a sterile plastic bubble until his death at age 12.