The IDF recommends to declare a public health emergency

“We cannot allow patients to die,” said Marcia Boyle, CEO and chair of the Immune Deficiency Foundation (IDF). “We have an FDA-approved lifesaving therapy that cannot be used in physicians’ offices because the MMA reduced reimbursement to the point that the medication isn’t affordable. We are counting on Sec. Leavitt to provide immediate relief to the patients before it’s too late.”
Press release via Business Wire here.
More from the IDF:
Primary immune deficiency diseases represent a class of disorders in which there is an intrinsic defect in the human immune systems(rather than immune disorders that are secondary to infection, chemotherapy, or some other external agent). In some cases, the body fails to produce any or enough antibodies to fight infection. In other cases, the cellular defenses against infection fail to work properly. There are more than 80 different primary immune deficiency diseases currently recognized by the World Health Organization.
Primary immune deficiency diseases are a set of comparatively rare genetic disorders. Nonetheless, the survey suggests that approximately 50,000 persons in the United States have been diagnosed with one of these diseases. Hence, primary immune deficiency diseases are more common in the United States than some better known genetic disorders, including hemophilia (less than 15,000), cystic fibrosis 30,000) and Huntingtons Disease (30,000), among others.