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Academy News: July 2004
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 |
For the first time, the Immune Deficiency Foundation (IDF) convened a consensus meeting of North America’s foremost immunologists to address the lack of awareness about primary immune deficiency diseases, delayed diagnoses and inconsistent treatment regimens. The meeting, held April 15-16 in Raleigh, NC, produced a blueprint for developing clinical care guidelines with the goal of decreasing the time for patients to be diagnosed and under the care of a specialist.
“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, MD, 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.”
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 primary immune deficiency diseases for patients, caregivers and healthcare providers. The guidelines will be available later this year.
IDF advocates for revised disability criteria
Last year, the Social Security Administration (SSA) revisited the medical criteria used to evaluate immune system disorders of adults and children for disability benefits. IDF contacted SSA to explain the current problems the primary immune deficiency disease (PIDD) community faces in obtaining disability benefits. Most PIDD patients are being denied disability benefits because SSA adjudicators did not know or understand primary immune deficiency diseases.
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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 launches Seafood Allergy Registry
FAAN has recently released several new educational materials. Additional information appears on our Web site, www.foodallergy.org.
Poster designed to provide food allergy awareness to food service industry
FAAN is working with a group of food-safety professionals to promote awareness and better understanding of food allergies in restaurants and the retail food-service industry. In partnership with FAAN, and with the help of Disney artists, they have designed a four-color poster for display in restaurants and retail food stores, to remind staff how to keep food-allergic guests safe. The posters are available in both English and Spanish.
Food allergy challenge guide for health professionals
Funded by the American College of Allergy, Asthma and Immunology (ACAAI), A Health Professional’s Guide to Food Challenges is a comprehensive review of the types of challenges, how to prepare and administer a challenge, and when and where challenges should take place. This new resource, written for registered dietitians, is co-authored by FAAN Medical Advisor and AAAAI member S. Allan Bock, MD, FAAAAI, and registered dietitian Shideh Mofidi, who is also a member of FAAN’s Program Committee.
Food Allergen Labeling and Consumer Protection Act (FALCPA) passed by Senate
The Food Allergen Labeling and Consumer Protection Act (FALCPA), proposed food label legislation, has been passed by the Senate and is now awaiting House approval. This new labeling legislation will require that ingredient labels be written in simple English, not scientific terms.
A FAAN “call-to-action” letter regarding the Food and Drug Administration’s (FDA) change in how they treat products with undeclared allergens has resulted in hundreds of letters sent to the FDA and legislators. Several groups within the FDA are now working with FAAN to learn more about FAAN members’ concerns regarding labels, recalls and the FDA in general.
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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: annual grant recipient announced
Anthony Horner, MD, assistant adjunct professor at the University of California, San Diego, has been awarded a two-year grant from AAFA for his project on “analysis of airway-TLR ligand interactions and their impact on CD4 cell differentiation.” Horner states, “In addition to allergens, there are a variety of environmental factors that are likely to influence the development of allergic asthma. For instance, microbes have a profound effect on how our immune systems work. This research focuses on determining what these microbial effects are and how they are related to asthma and allergies.” Visit AAFA’s Web site, www.aafa.org, to learn more about our research grant program.
Education: new asthma brochure for your patients
“Asthma Basics” is an easy-to-read brochure for patients, and one of the most popular brochures in AAFA’s patient pamphlet series, “Living With Asthma and Allergies.” This newly-updated,12-page brochure answers the most fundamental questions about asthma, including symptoms, diagnosis, prevention, treatment options and more, all in easy-to-understand language with helpful illustrations. It’s perfect for newly diagnosed or experienced patients and caregivers. Order a supply for your patients at www.aafa.org.
Antihistamine coverage
AAFA strongly opposes the Tennessee Medicaid proposal to eliminate coverage of antihistamines for Medicaid beneficiaries. TennCare, Tennessee’s Medicaid program, serves 1.3 million people. AAFA believes that eliminating coverage for antihistamines is contrary to medical consensus and is potentially harmful to beneficiaries. AAFA is appealing directly to the Centers for Medicare & Medicaid Services (CMS) to deny this proposal from Tennessee. The state would be the first in the nation to eliminate Medicaid coverage for an entire class of drugs, potentially setting a dangerous precedent for allergy sufferers nationwide. Together with the AAAAI and the ACAAI, we can ensure that our unified voices on this issue will be heard.
Asthma Awareness Day Capitol Hill 2004
Congressional briefings, awards, asthma screenings, health exhibitions and educational workshops comprised AANMA’s seventh annual Asthma Awareness Day Capitol Hill. The central issue was HR 2023, a Congressional bill supporting students’ rights to carry and self-administer prescribed lifesaving asthma and anaphylaxis medications, while attending school and school-sponsored activities. The bill is currently moving through the House of Representatives, and a companion bill is being prepared in the Senate.
Key speakers included Elizabeth Cotsworth of the Environmental Protection Agency (EPA); Robert Meyer, MD, of the Federal Drug Administration (FDA); and Stephen Redd, MD, of the Centers for Disease Control and Prevention (CDC).
Indoor AIRepair™at Home School and Play
Do your patients know about the connection between their children’s asthma and indoor air quality at home, school and play? AANMA’s Indoor AIRepair™ at Home School and Play kit explores this connection and offers low- and no-cost solutions to indoor air quality concerns.
The free kit, provided by AANMA through a cooperative agreement with the Environmental Protection Agency (EPA) Indoor Environments Division, will be available in this summer. Reserve your copy now. Contact Kathy Borghi at (800) 878-4403 x 108 or e-mail kborghi@aanma.org.
Respirando con AANMA has arrived
For the first time in AANMA’s 18-year history, we’ve created a Hispanic counterpart to the renowned MA Report newsletter. Respirando con AANMA is a cultural resource for Hispanic families with asthma, funded through a cooperative agreement with the CDC.
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The American Partnership for Eosinophilic Disorders
3419 Whispering Way Drive
Richmond, TX 77469
Phone (713) 498-8216
Fax (281) 238-9436
www.apfed.org
E-mail mail@apfed.org |
New, improved Web site and educational materials
The APFED Web site is the only source for lay people on eosinophilic gastrointestinal disorders (EGID) produced by a non-profit organization. The APFED Web site is undergoing a complete redesign and update. The new site will also feature information for patients suffering with Hypereosinophilic Syndromes (HES) and Churg-Strauss Syndrome (CSS). The content will be reviewed by our multidisciplinary Medical Advisory Board for accuracy and will include current accepted treatment practices. The Web site has already proven to be an enormous asset to the patient community. APFED plans to launch this new and improved version in late 2004.
Along with the new logo, featured at the 2004 AAAAI Annual Meeting, and the new Web site, APFED will be creating new educational materials. The materials will be available this winter. Also available at this time will be a second edition printing of the pediatric EGID book, Can You Say Eosinophilic? This book was written by a mother/daughter team and is a teaching tool for school-aged, tube-fed children.
EGID in the news
A special report on eosinophilic esophagitis that originally aired in Philadelphia, PA, was picked up by Medstar Television. This spot ran in various cities during late April and throughout the month of May. Since other allergic and gastric ailments often mimic the symptoms of EGID, public education news items are a critical means of reaching the general population to increase awareness of the existence of EE and its related entities. APFED was cited as a primary reference on the Web-based articles that accompanied the television spots.
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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 |
Publications available
Addresses for all state agencies responsible for ambulance services and inspections are being compiled. The second edition of Guidelines for the Care of the Latex Allergic Patient will be distributed to these agencies within the next four months.
Guidelines for Accommodating the Latex Allergic Student is in the last stages of completion. Medical review and final edits need to be completed. This publication will be ready for distribution prior to the beginning of the 2004-2005 school year.
Web site updates coming
Watch for updates coming soon to the American Latex Allergy Association Web site, www.latexallergyresources.org.
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