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 www.primaryimmune.org.
SOURCE Immune Deficiency Foundation