In Recognition of National Primary Immune Deficiency Diseases Awareness Week

IN RECOGNITION OF NATIONAL PRIMARY IMMUNE DEFICIENCY DISEASES AWARENESS WEEK -- (Extensions of Remarks - April 22, 2004)

SPEECH OF
HON. TAMMY BALDWIN
OF WISCONSIN
IN THE HOUSE OF REPRESENTATIVES
THURSDAY, APRIL 22, 2004

Ms. BALDWIN. Mr. Speaker, I rise today to ask my colleagues to join me in recognizing the week of April 19th as National Primary Immune Deficiency Diseases Awareness Week. Primary immune deficiency diseases (PIDD) are genetic disorders in which part of the body's immune system is missing or does not function properly. The World Health Organization recognizes more than 150 primary immune diseases which affect as many as 50,000 people in the united States. Fortunately, 70 percent of PIDD patients are able to maintain their health through regular infusions of a plasma product know as intravenous immunoglobulin. IGIV helps bolster the immune system and provides critical protection against infection and disease.

I am familiar with primary immune deficiencies because of a constituent of mine who has a primary immune deficiency disease called selective antipolysaccharide antibody deficiency syndrome. Linda Keegan, like so many primary immune deficiency patients was not diagnosed until adulthood. Linda spent a great part of her life winding her way through the health-care system, suffering from recurrent sinus and ear infections, sinus surgery, and the mid-life onset of asthma. She felt that virtually nobody with a medical degree of any sort was willing to understand or believe that she was unable to resist infections in the same way that most people do. She spent her life being sick and on antibiotics. Finally, one morning in an urgent care unit, a physician's assistant listened to her medical history, and said "there might be something wrong with your immune system." Linda took it upon herself to research the immune system on the Internet, and eventually met an immunologist who diagnosed her correctly, in her mid-40's.

Linda is eligible for IGIV therapy, but so far a daily dose of two antibiotics is preventing sinus and ear infections, and her asthma symptoms have become sporadic, rather than chronic. She knows that someday she might have to depend on IGIV, but for now she is trying to make good lifestyle choices and keep a positive attitude. One way Linda has done this is by becoming a volunteer peer contact for the Immune Deficiency Foundation. In my home State of Wisconsin, Linda provides information and support to other PIDD patients or parents who have children with PIDD.

Linda is not unique with the delay in diagnosis of her primary immune deficiency disease. Despite the recent progress in PIDD research, the average length of time between the onset of symptoms in a patient and a definitive diagnosis of PIDD is 9.2 years. In the interim, those afflicted may suffer repeated and serious infections and possibly irreversible damage to internal organs. That is why it is critical that we raise awareness about these illnesses within the general public and the health care community.

Mr. Speaker, I commend the Immune Deficiency Foundation for its leadership in this area and I am proud to join them in recognizing the week of April 19th as National Primary Immune Deficiency Diseases Awareness Week. I encourage my colleagues to work with us to help improve the quality of life for PIDD patients and their families.