National Primary Immune Deficiency Disease Awareness Week

NATIONAL PRIMARY IMMUNE DEFICIENCY DISEASES AWARENESS WEEK

Mrs. MURRAY. 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 intravenous immunoglobulin, IGIV. IGIV helps bolster the immune system and provides critical protection against infection and disease.

I want to share with my colleagues the story of one family in Washington State affected by PIDD, the Trump family, who have common variable immune deficiency, CVID, one of the more common forms of primary immune deficiency diseases. Gary Trump's first wife, Tracee, carried CVID for at least 18 years prior to diagnosis. During that time, she suffered repetitive infections, even life-threatening disease, but was never properly diagnosed. In 1993, 8 days after the birth of their second son, Christian, Tracee was struck down by viral encephalitis, and suffered through 4 years of pain, amnesia, and total disability prior to passing away in 1997. Their first son, Darren, also had numerous infections, almost from birth. Within a year of Tracee's diagnosis, Darren was tested and found to have CVID. Christian, who nearly died of viral pneumonia at 2 months of age, was also diagnosed with CVID.

The Trump family is not unique with the difficulty and delay in diagnosis of 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.

I am proud to have the opportunity to recognize 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.