Immune Deficiency Foundation Release: Better Treatment, Better Care: Closing The Gap For People With Primary Immune Deficiency Diseases
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 http://www.primaryimmune.org/.
Immune Deficiency FoundationCONTACT: Pamela Mooring, Manager, Marketing and Communications,Immune Deficiency Foundation, +1-410-321-6647 ext. 308, or +1-410-736-2789(cell), pm@primaryimmune.org
Web site: http://www.primaryimmune.org/