Lay Organizations
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Immune Deficiency Foundation
40 West Chesapeake Avenue
Suite 308
Towson, MD 21204
Phone 800-296-4433
www.primaryimmune.org |
Compassionate
Care program
In March 2002, the Immune Deficiency Foundation (IDF) initiated a
Compassionate Care Program to provide IGIV product as a stopgap measure
for those primary immune deficient patients in need. This includes those
who may find themselves suddenly without insurance or being denied
coverage for IGIV by their insurance carrier.
The product is offered through generous donations from the
manufacturing industry. This program has also donated IGIV product for
other disease states, provided IGIV is medically necessary for the
diagnosis.
There are three requirements to qualify. First, patients or their
guardians submit a letter describing the financial circumstances
surrounding the request and second, a letter from the physician must state
the diagnosis, treatment and recommended dosage of product.
Lastly, the patients or families should demonstrate they are actively
seeking a resolution to the insurance question. Since its inception, 72
patients have been helped through Compassionate Care, for a total of more
than 10,000 grams of product. For more information call (800) 296-4433 or
e-mail dg@primaryimmune.org.
Internet-based Continuing Medical Education (CME) courses
The IDF offers CME courses on primary immune deficiency diseases. The
Internet-based CME course entitled, “The Clinical Presentation of Primary
Immune Deficiency Diseases,” is designed to help health care providers
better understand and diagnose primary immune deficiency diseases.
Through a series of illustrative case studies, biopsies, X-rays and
laboratory overviews, the course provides a comprehensive overview of
these diseases.
Jerry A. Winkelstein, MD, a leading authority on primary immune deficiency
diseases, developed the curriculum and presents the online lecture.
Winkelstein is a professor at the Johns Hopkins University School of
Medicine and Director of the Division of Immunology in the Department of
Pediatrics at Johns Hopkins Hospital.
Upon course completion, physicians and nurses earn 1.5 CME credit hours
required for license renewal. The course is nationally accredited through
the Health Communication Research Institute and the University of
California-Davis, School of Medicine.
The course is free, but there is a $10 certificate-processing fee. For
more information, contact the IDF at (800) 296-4433 or e-mail
tb@primaryimmune.org.
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Food Allergy & Anaphylaxis Network
11781 Lee Jackson Highway, Suite 160
Fairfax, VA 22030
Phone 800-929-4040
Fax (703) 691-2713
www.foodallergy.org |
FAAN has moved
FAAN is delighted to announce that it has moved to a new location. With
expanded office and meeting space, we look forward to continued
enhancements in raising awareness, providing advocacy and education, and
advancing research on behalf of all those affected by food allergy and
anaphylaxis.
World food allergy organizations meet
The third-annual international Food Allergy & Anaphylaxis Alliance (FAAA)
meeting was held in September. In addition to FAAN, the group included
representatives from Australia, Canada, Japan, the Netherlands, New
Zealand and the United Kingdom.
Martha V. White, MD, FAAAAI, of the Institute for Asthma &
Allergy, Washington, D.C., represented the American Academy of Allergy,
Asthma and Immunology (AAAAI). White and food industry representatives
also participated in the four-day meeting, and expressed eagerness to work
more closely with food-allergy organizations. Alliance members all shared
similar concerns about unreliable food labeling practices and teens as a
high-risk group.
Based on the meeting, FAAA initiatives will include the development of
a fact sheet to help members ask “the right questions” to determine if a
manufacturer’s food product contains a food allergen. The group also
called on food manufacturers to post labeling policies on their Web sites
as another way to help guide families with food allergen questions.
Confusing terms
During the holiday season, FAAN receives numerous phone calls from
members who have questions about ingredients. Here are some of the terms
that we are often asked about:
- Nutmeg and mace: Both are obtained from the same tropical
tree. The seed of this tree is the source of nutmeg. The outer coating
of the seed is ground to make the mace. These ingredients should be safe
for a person who is allergic to tree nuts.
- Calcium stearoyl-2-lactylate and sodium stearoyl-2-lactylate:
Combinations of lactic acid and stearic acid. They are used as dough
conditioners, whipping agents and emulsifiers. These ingredients should
be safe for a milk-allergic person.
- Lactic acid: A commercial food produced either by chemical
synthesis or from bacterial fermentation of a carbohydrate such as corn
sugar. It is considered safe for a milk-allergic person. However, lactic
acid starter culture may contain milk. Patients should contact the
manufacturer.
- Marzipan: A paste made of ground almonds, sugar and sometimes
egg whites. Marzipan is not safe for people who are allergic to almonds
or eggs.
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Asthma and Allergy Foundation of America
1233 20th St. NW, Suite 402
Washington, DC 20036
Phone (202) 466-7643
Fax (202) 466-8940
www.aafa.org |
Research: finding the Fall Allergy Capitals™
AAFA has once again conducted research to identify the nation’s top 50
Fall Allergy Capitals™–the most severe cities for people with fall
allergies. Harrisburg, PA, tops the 2003 fall list. Similar to the Spring
Allergy Capitals™research project completed last May, the fall list was
developed as part of AAFA’s nationwide “Allergy Action Plan” campaign to
educate Americans about the seriousness of seasonal allergies. The fall
list rankings were based on several factors, including key environmental
and medical factors in each city, such as:
- Average recorded fall pollen levels over the last seven years
- Length of the peak season for the most offensive pollen types
- Number of antihistamine prescriptions written per capita
- Number of board-certified allergists per capita
Visit
www.allergyactionplan.com to see the complete list and more.
Education: back-to-school for asthma education
It’s back-to-school time, and time to consider AAFA’s
“Meeting-in-a-Box: Asthma Management at School” education program. Order
it online at www.aafa.org. This turn-key
education program makes it easy for school nurses and other Allied Health
professionals to teach children, parents and school staff about asthma
basics. This includes definitions, anatomy, asthma triggers and asthma
treatment tools, such as spacers, peak flow meters, inhalers and
nebulizers. In addition, this program helps participants learn how to
identify asthma emergencies at school, including exercise-induced asthma,
and how to create a school management team. To find out more, and to see
our complete catalog of programs for health-care providers and patients,
visit www.aafa.org.
Advocacy: more voices for increased NIH funding
This fall AAFA is participating in a multidisciplinary effort to
convince Congress to increase National Institutes of Health (NIH) funding
by 9.2% in fiscal year 2004. An overall increase in NIH funding would be a
move in a positive direction for asthma and allergy patients who have
benefited from NIH research at the National Institute for Allergy and
Infectious Diseases (NIAID), the National Heart, Lung and Blood Institute
(NHLBI) and the National Institute for Environmental Health Sciences (NIEHS).
AAFA mobilized asthma and allergy advocates in a letter-writing
campaign to urge representatives and senators to support an increase in
appropriations. In addition, AAFA and nearly 600 other health-care
organizations, placed a full-page advertisement in Roll Call, the
leading newspaper of Capitol Hill, urging Congress to support meaningful
biomedical research funding increases at NIH. For more information, visit
the advocacy pages at www.aafa.org.
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Allergy & Asthma Network Mothers of Asthmatics
2751 Prosperity Ave., Suite 150
Fairfax, VA 22031
Phone 800-878-4403
Fax (703) 573-7794
www.aanma.org
E-mail aanma@aol.com |
18 years of practical, real-life patient support
As AANMA celebrates 18 years of service, we remain committed to working
with the American Academy of Allergy, Asthma and Immunology (AAAAI) and
other professional organizations to serve the needs of people with allergy
and asthma, and their families. Turn to AANMA for practical, up-to-date,
reliable resources you can trust for your patients. Call 800-878-4403 to
learn more about: The MA Report newsletter, Allergy & Asthma
Today magazine,
www.breatherville.org interactive Web site, Breathing for Two: A
Guide to Asthma During Pregnancy, and The Indoor AIRepair™ Guide.
Don’t miss the new Home, School and Play Program (see information
below).
Watch for these stories in the fall issue of Allergy & Asthma Today:
“Running for your life: from crisis to victory, it’s all under control;”
“The secret life of dust: what’s the big deal about a little something;”
and “My top ten reasons for practicing allergy in New York City,” by
Paul Ehrlich, MD, FAAAAI.
Community service awards
Two of AANMA’s Outreach Service Coordinator (OSC) community
volunteers, Barbara Johnson, Columbus, OH, and Clatie Campbell, Trenton,
NJ, received Special Achievement Awards from the U.S. Environmental
Protection Agency’s (EPA) Tools for Schools Program, in recognition of
their efforts to improve the indoor air quality of schools in their
communities.
Indoor air quality program
AANMA is partnering with the EPA to launch Home, School and Play, a
community outreach program to reduce children’s exposure to environmental
asthma triggers. Home, School and Play kits are available now, call (800)
878-4403, ext. 108, for details.
New at AANMA’s Web site Breatherville, USA™ You can experience
asthma and allergies through the creative interpretations of young
artists, musicians, writers and producers. Listen to and view the 2003
Asthma Awareness Day award-winning entries at
www.breatherville.org/playtime.
Haven’t been to Breatherville yet? Log on and encourage your patients to
do the same. With 14 buildings full of allergy and asthma information,
there’s something for everyone.
Adolescent asthma
AANMA enters the second year of its Asthma Education Information
Outreach United (AEIOU) cooperative agreement with the Centers for Disease
Control and Prevention, with a focus on the adolescent asthma population.
Year two efforts include focus groups to identify potential messages and
resources for this currently underserved population.
Nurse Christy
AANMA Nurse Educator Christy Olson, RN, BS, MS, AE-C, answers asthma
and allergy questions by telephone and e-mail. Patients can call (866)
227-2934, Monday-Friday, 9:00 a.m. to 12 p.m. CST, to talk with Christy
directly, or visit
www.breatherville.org and submit a question in the Medical Center.
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