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Academy News: July 2005
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 |
 Marcia Boyle named
chairperson, CEO
Marcia Boyle has returned to the Immune Deficiency Foundation (IDF) office to serve as IDF’s chief executive officer and chair. As the co-founder of IDF in 1980, Boyle served as the chair and CEO/president until 1995, as chair until 2001, and has continued as a member of the Board of Trustees since that time. During her earlier tenure as president and CEO, she developed many of IDF’s well-known patient and medical programs. She was also a co-founder of the International Patient Organization for Primary Immune Deficiency Diseases (IPOPI). Boyle was also the recipient of the AAAAI’s Distinguished Layperson Award in 2003.
Boyle has been a passionate patient advocate for 25 years, after starting IDF in reaction to the diagnosis of her son with X-linked Agammaglobulinemia. Her hope for IDF is to greatly expand its ability to quickly react to issues that affect patients and develop long-term solutions. This means reaching many more patients with primary immune deficiency diseases and the physicians who treat them. It also includes a strong advocacy program for issues that impact patient care, education for physicians to improve the rate of diagnosis and optimal care, education and tools for patients and families to manage their lives and health, and expanded research.
IDF and FDA co-sponsor workshop
The Center for Biologics Evaluation and Research, Food and Drug Administration (FDA), and the Immune Deficiency Foundation recently co-sponsored a workshop, Intravenous Immune Globulins in the 21st Century: Progress and Challenges in Efficacy, Safety, and Paths to Licensure. The workshop discussed current issues and research priorities in IGIV safety and efficacy, current paradigms for IGIV licensure, and critical paths to licensure. It provided a forum for preeminent academics in the field of primary immune deficiency diseases, the FDA, National Institutes of Health, Centers for Disease Control and Prevention, and the IGIV industry to discuss these important issues.
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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 |
 Food ingredient label reading
Food products with labeling required by the Food Allergen Labeling and Consumer Protection Act are beginning to appear on the market shelves. Please be sure to remind your patients with food allergies to read food labels every time, for every product, as ingredient formulations may have changed due to the new law.
Food Allergy News for Nurses
A new four-page quarterly newsletter, Food Allergy News for Nurses, will be distributed to allied health professionals nationwide in August. The first issue will feature articles with back-to-school tips and strategies which can be used as patient education handouts. Each issue will be filled with seasonal easy-to-read articles and patient education information. Allied health members interested in receiving the newsletter should contact FAAN at (800) 929-4040. The publication is supported by an unrestricted educational grant from Verus.
National walk campaign
A national series, FAAN Walk for Food Allergies—Moving Toward A Cure, will kick off in August. Nine FAAN walks have been scheduled to help us raise awareness and funding for our research and education programs. Locations include: Niagara Falls, NY; Fairfax, VA; Eden Prairie, MN; Boston, MA; West Haven, CT, Long Island, NY; Ridgewood, NJ; Providence, RI; and Naperville, IL. Please come and join the effort, and encourage your patients to join in the fun and exercise. For more information, visit FAAN’s Web site, www.foodallergy.org.
Kids’ Congress on Capitol Hill
In order to educate legislators about food allergies, FAAN is hosting a Kid’s Congress on Capitol Hill, October 18-19. FAAN members, ages 6 to 18, will be invited to apply to attend this two-day meeting in Washington, DC. Those selected will meet with representatives from their states and work to educate governmental officials on food allergies. Please encourage your young patients to visit FAAN’s Web site and learn more about this inaugural program.
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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: allergy capitals
For the third year in a row, AAFA has conducted primary quantitative research to identify the 100 “Spring Allergy Capitals,” the most challenging places to live if you have spring allergies. Lexington, KY, leads this year’s list, and Miami, FL, came in last. AAFA President Chris Ward, an asthma and allergy patient, used the rankings as an opportunity to remind people that, “allergies are a problem all over the United States, and some places present more challenges than others.” The annual ranking is an outstanding opportunity to raise overall awareness about seasonal allergies and to encourage patients to see allergists. Researchers examined risk factors, medicine utilization and data on access to care for each city. Data were weighted, tabulated and final scores were listed in rank order to determine the final list. A full list of rankings and a detailed methodology are available on AAFA’s Web site, www.AllergyCapitals.com.
Awareness: wristbands
Give a gift to your colleagues and patients, and help them show their support for people with asthma and allergies with “life without limits” wristbands. They serve as a constant reminder for people to prevent, and manage their asthma and allergies. Order a supply of wristbands and other items for your patients at www.aafa.org.
Advocacy: patient assistance
AAFA has joined a group of pharmaceutical research companies, doctors, patient groups and others to form the “Partnership for Prescription Assistance,” the largest ever private-sector program to help give medicines to qualifying patients who lack prescription coverage. Through a toll-free phone number, (888) 4PPA-NOW (1-888-477-2669) and Web site, www.pparx.org, you can get information about 275 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies. The program offers prescription medicines not only for asthma and allergies, but also for diabetes, hypertension, cancer, HIV/AIDS, depression and more.
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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 |
 Protect access to safe
respiratory medications
Prescription nebulizer medications are being swapped out with products that are not approved by the Food and Drug Administration (FDA). These products are manufactured and sold under the guise of traditional pharmacy compounding. Product labeling and advertisements do not warn patients that these medications are not approved by the FDA as safe, sterile and effective.
Patients believe they are receiving the medication prescribed by their physician. They are not aware of health risks that may include super- or sub-potency, known airway irritants such as ethanol, bacterial contamination such as pseudomonas cepacia, and drug combinations and doses that have not been proven safe or effective in clinical settings.
Physicians are also at risk. Should patient health fail to improve or their condition worsen, physicians are liable. This has resulted in many physicians writing, “do no compound, do not substitute” on prescription forms, but this may not be enough.
AANMA took the issue to Congress during Asthma Awareness Day Capitol Hill on May 4, but further action is needed.
Visit www.breatherville.org/cityhall and click on the CHASM logo to read the Citizen Petition to the FDA. Use the online form to write a letter of support.
AANMA members will receive more information on this issue in The MA Report newsletter and Allergy & Asthma Today magazine.
Take the sting out of summer fun
Fifty people die each year from allergic reactions to insect stings. Half of these people have not experienced a prior allergic reaction to an insect sting.
The symptoms of anaphylaxis and the insects that can set them off are outined in The AANMA Challenge: Take the Sting Out of Summer Fun. Visit www.breatherville.org/publications to download a four-page PDF.
 School safety guidelines
In response to numerous queries from schools, the American Latex Allergy Association (A.L.E.R.T., Inc.) has developed a resource manual, School Safety Guidelines For Latex-Allergic Students. This 71-page manual contains resources to educate and assist school personnel as they strive to create a latex-safe learning environment.
School Safety Guidelines For Latex-Allergic Students includes information about:
- Prevalence and risk factors for latex allergy
- Suggested guidelines for creating a latex-safe school
- Sample school policies and forms
- State and national legislation
- Position statements from the National Association of School Nurses and the AAAAI
- A latex-free school alternative products list
- Product resources
- Educational articles
The manual has been partially funded by Dey Pharmaceuticals, and is available from the American Latex Allergy Association for $45.
Online membership system
After months of development, the American Latex Allergy Association has launched a new online membership tool. This allows new members to register using a secure online form. In addition, existing members can manage and renew their accounts online. This new system will make it easier for members to join, while making renewals and personal information updates even easier for our current members.
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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 |
 Educational materials
Several new educational materials have been completed by APFED and are now available for distribution. We now offer disease-specific brochures on Eosinophilic Gastroenteritis, Eosinophilic Esophagitis, Hypereosinophilic Syndrome and a general information brochure on the organization. Soon to be released will be a brochure on Churg-Strauss Syndrome. Plans are underway for a more comprehensive 12-page booklet on the eosinophilic disorders, with completion expected by late fall.
A new children’s book on living with Eosinophilic Gastrointestinal Disorders (EGID) has been finalized and is currently being printed. This book was a collaborative effort by SHS North America and APFED, and is intended to be a teaching tool for young children, for use both in the home and at school. Available this month, Teddy the Tummy is a fun, upbeat book written from the tummy’s perspective. Requests for our educational materials, including the children’s books, may be made via e-mail to mail@apfed.org, or by calling APFED at (713) 498-8216.
Patient education conference
The third APFED Patient Education Conference is just around the corner. Although the meeting is directed toward patients and parents, physicians and nurses are always welcome to attend. The conference will be held July 15-17, in Cincinnati, OH. More information and registration materials are available at www.apfed.org.
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