Better Treatment, Better Care: Closing the Gap for People With Primary Immune Deficiency Diseases

- Immune Deficiency Foundation Convenes First-ever Consensus Meeting to

Develop Clinical Care Guidelines to Improve Health Outcomes -

Apr 15, 2004, 01:00 ET from Immune Deficiency Foundation

    BALTIMORE, April 15 /PRNewswire/ -- A recent landmark study conducted by
 the Immune Deficiency Foundation (IDF) found that people affected by primary
 immune deficiency diseases (PIDD) often go undetected and untreated, taking an
 average of 9.2 years from onset of symptoms until diagnosis. Because the
 symptoms of these life-threatening illnesses are not unique -- the lack of
 awareness about PIDD, conflicting diagnoses, and inconsistent treatment
 regimens -- repeated serious infections and pneumonias lead to long-term
 irreversible health consequences for individuals with primary immune
 deficiency diseases. In response to the problem, the IDF, in its leadership
 role, is convening for the first-time a consensus meeting of North America's
 foremost immunologists and a conference of more than 100 primary immune
 deficiency disease patients, caregivers, and advocates.
     These important events are a part of an overall campaign to launch
 National Primary Immune Deficiency Awareness Week, April 18-25, 2004.  The IDF
 hopes to implement plans that will increase awareness about the disease,
 decrease the time for patients to get diagnosed, and establish treatment and
 care guidelines for people with primary immune deficiency diseases.
     "The clinical care guidelines that will be established will change the
 face of how those living with PIDD are diagnosed and treated," said Jonathan
 Goldsmith, M.D., interim president of IDF.
     "With today's technological advances and access to information, a 9.2-year
 diagnosis period is not acceptable. It is our responsibility, as medical
 professionals, to determine what constitutes the best care, treatment, and
 methods of delivery to ensure access to equitable and quality care for
 patients and families."
     Primary immune deficiency diseases include a group of more than 100
 disorders in which part of the body's immune system is missing or does not
 function properly. The class of diseases affects approximately 50,000
 Americans. People with a PIDD often suffer persistent or recurrent infections
 that can be life threatening, without proper care and treatment. The most
 widely used treatment method for these diseases is the periodic infusion of
 intravenous immunoglobulin (IGIV). Although nearly 70 percent of primary
 immune deficient patients use IGIV to maintain their health, more than 90
 percent are concerned about the safety of this plasma-derived product. Another
 goal of the awareness week is to educate individuals affected by PIDD about
 the demonstrated safety of available treatment options.
     Nearly a dozen leading immunologists are a part of the consensus meeting
 which will convene in Raleigh, N.C. The goal of this two-day consensus meeting
 will be to deliver the IDF's first comprehensive, evidence-based diagnostic
 and clinical care guidelines for PIDD for patients, caregivers and healthcare
 providers. The guidelines, which will be available later this year, will
 include recommendations, strategies, and additional information to help
 healthcare providers and patients make informed decisions about appropriate
 healthcare for those living with PIDD. In addition, the guidelines will be
 disseminated to federal agencies, practitioners, insurance companies, and
 medical and patient associations and journals.
     The second campaign activity, a leadership conference, occurring April 16-
 18 also in Raleigh, N.C., will bring together IDF volunteers, including PIDD
 patients and family members from 32 states. The conference attendees will be
 provided with the latest information, research, news, and outreach tools to
 continue raising awareness and improving the quality of life for individuals
 with these rare disorders.  As a part of the conference, participants will
 have an opportunity to tour Bayer Healthcare BP's Gamunex(R) production
 facility, in Clayton, N.C. and learn about the complex IGIV production process
 and the associated safety steps involved in the manufacturing process.
     "We have great hope in the consensus meeting because as a result, patients
 and caregivers will finally have a clear roadmap for treatment and care," said
 Kris McFalls, IDF volunteer. "What makes this week even more remarkable is
 having the opportunity to connect with other volunteers. Meeting other people
 like me who are dedicated to improving the lives of those living with PIDD,
 and seeing how my sons' treatment is made will be an empowering experience
 that will make me a better advocate for those who are affected by this
 disorder," said Kris McFalls.
     The meetings are being supported through an educational grant from Bayer
 HealthCare LLC, Biological Products Division (Bayer BP).
     The Immune Deficiency Foundation (IDF) is the national non-profit health
 organization dedicated to improving the diagnosis and treatment of primary
 immune deficiency diseases through research, education and advocacy. IDF was
 established more than two decades ago by concerned families of patients and
 their physicians. Since its inception, IDF has expanded to offer medical
 education, fellowship and research opportunities and publications. IDF
 sponsors a biennial National Conference for patients, their families and
 healthcare professionals.  More information about primary immune deficiency
 diseases and IDF can be found at

SOURCE Immune Deficiency Foundation