National Primary Immune Deficiency Diseases Awareness Week

NATIONAL PRIMARY IMMUNE DEFICIENCY DISEASES AWARENESS WEEK

Mr. DURBIN. Mr. President, I rise today to ask my colleagues to join me in recognizing the week of April 19 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 known as intravenuous immunoglobulin, IGIV. IGIV helps bolster the immune system and provides critical protection against infection and disease.

I am familiar with primary immune deficiencies because of a family in my State, the Jones family, whose daughter, Emma, was born with common variable immune deficiency, CVID, and hypogammaglobulinenimea. Emma has no immune system and relies on IGIV infusions every month to keep her alive. Emma, 9 years old, is a patient at Duke University Medical Center, and is hoping to be a candidate for a stem cell transplant. Emma's mother, Jill, also has CVID and receives IGIV infusions. The Jones family has become active volunteers for the Immune Deficiency Foundation, to help other families facing PIDD in my home State of Illinois.

I would also like to tell you about another courageous family in my State, the Berryhills, who became foster parents to an infant that was finally diagnosed with severe combined immune deficiency, SCID, or bubble boy syndrome. Their son, who they want to adopt, would have died if Zina and Ray Berryhill did not persist in finding out why he was dying before their eyes. Their son was finally diagnosed with SCID, and the cure for him is a bone marrow transplant. Unfortunately, they have not been able to find a match, due to the shortage of African Americans on the Marrow Donor List. Zina Berryhill continues to hold bone marrow drives, and keeps her son isolated, except for his frequent trips to the hospital for his IGIV infusions. The Berryhill family has also become active volunteers for the Immune Deficiency Foundation.

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.

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 19 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.