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Academy News: September 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 |
 IDF launches campaign
The biggest threat to the primary immune deficiency community is the IVIG reimbursement crisis. The dramatic reduction in Medicare reimbursement rates has forced patients out of the physician’s office and home care to the hospital setting to receive their infusions. In some cases, patients have been denied care in all sites of service. Furthermore, Medicare reimbursement for IGIV in the hospital setting will be reduced to the same rates as physician offices and home care on January 1, 2006.
To mobilize providers, advocates, and patients around this important policy issue, IDF has launched CapWiz, an online advocacy tool. CapWiz allows individuals to e-mail, fax or send letters to members of Congress, the President and federal agencies, follow key legislation and policy issues, and receive alerts indicating when to take action. IDF encourages AAAAI members to participate in this grassroots campaign. Log on to www.primaryimmune.org and click on IDF Grassroots Advocacy Program. In just five minutes, you can make a big difference in ensuring access to life saving IGIV for your patients.
2005 IDF National Conference
On June 23, over 1,400 individuals arrived in Orlando, FL, to attend the third Immune Deficiency Foundation National Conference and celebrate IDF’s 25th anniversary. The conference, dedicated to the memory David Vetter and all those affected by primary immune deficiency diseases, marked the largest gathering of families affected by primary immune deficiency diseases ever in the world.
Conference attendees learned about scientific advancements in the diagnosis and treatment of primary immune deficiency diseases, and gained the skills needed to manage their health care. IDF is grateful that renowned immunologists shared their time and expertise with the families.
Through a legislative advocacy workshop and informative breakfast symposium, IDF also united the community around the important issues of IGIV reimbursement and newborn screening, which will ensure access to care and earlier diagnosis for patients. The families also benefited from the opportunity to meet others living with primary immune deficiency diseases and enjoy the festivities of Walt Disney World.
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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 |
 New Advisory Board members
AAAAI members Stacie M. Jones, MD, and Todd A. Mahr, MD, MD, FAAAAI, have joined the FAAN Medical Advisory Board.
Label reading still best measure
FAAN is receiving calls from concerned members regarding misleading and incorrect information on lists and Web sites claiming to have updated ingredients on food products. Stress to your patients that label reading is still the best measure to avoid a food allergic reaction.
Educating governmental officials
Kid’s Congress on Capitol Hill is a new program to increase the overall advocacy and awareness efforts for food allergies nationwide. Scheduled October 18-19, in Washington, D.C., FAAN members, ages 6 to 18, will meet with state representatives to educate governmental officials on food allergies.
FAAN participated in the “Life Threatening Reactions to Food and Drugs” congressional briefing sponsored jointly by the AAAAI and ACAAI in July. FAAN Founder & CEO Anne Munoz-Furlong joined Jonathan A. Bernstein, MD, FAAAAI, Hugh A. Sampson, MD, FAAAAI, and Carlos A. Camargo, Jr., MD, DrPH, FAAAAI, in presenting the need for expanding the National Institutes of Health (NIH) budget for research and education for anaphylaxis.
FAAN Research Grant Program
FAAN’s Research Grant Program has gotten off to another remarkable start. FAAN received 31 letters of intent from researchers worldwide and 10 proposals have been selected for full proposal submission. The program is a competitive peer review process and chaired by FAAN’s Research Advisory Board member John W. Yunginger, MD, FAAAAI.
FAAP updated to include two new epinephrine kits
FAAN has updated the Food Allergy Action Plan to include both epinephrine kits, Dey’s EpiPen and Verus’ Twinject. The revised form can be downloaded from our Web site.
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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: grant awardees
Every year AAFA awards grants to researchers. The 2005 awardees are Anthony A. Horner, MD, FAAAAI, for “Analysis of airway-TLR ligand interactions and their impact on CD4 cell differentiation,” and Richard T. Strait, MD, for “Inhibition of immunopathology by blocking antibodies.” Candidates are named by the National Institutes of Health (NIH), and recipients are selected by AAFA’s Medical-Scientific Council. Learn about applying for grants at www.aafa.org.
Awareness: sleep, work, play
A recent national AAFA survey shows a majority of asthma patients said their asthma was “in control.” These same patients reported that asthma frequently keeps them awake, keeps them home from school or work, and interrupts playtime activities, all signs that asthma is out of control. As a result of this dramatic gap, AAFA has created a national awareness campaign entitled “Sleep/Work/Play” or “Sleep/Learn/Play” for Kids, which offers a common language for patients, parents and physicians to use to determine if asthma is under control. Visit www.sleepworkplay.com for details.
Advocacy: latex laws
AAFA supports the efforts of states concerned with the use of natural rubber latex gloves in food handling, which is increasingly responsible for reactions by consumers with hypersensitivity to latex protein. Latex allergies are growing, and several states are pursuing new rules to protect public health.
In New York, legislation is pending that would require food establishments to post notices for patrons about the use of natural rubber latex gloves in food preparation. Rhode Island and Arizona currently ban the practice entirely, while Minnesota and Connecticut have introduced similar proposed bans. Oregon has legislation pending to conduct a risk assessment, to guide future decision-making on a potential ban. For more information contact Mo Mayrides, AAFA Director of Public Policy, at (202) 466-7643, x273 or e-mail mo@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 |
 Breathe: It’s the Law
HR 2023 is a resounding success. Thanks to the Asthmatic Schoolchildren’s Treatment and Health Management Act of 2004, HR 2023, now Public Law 108-377, almost every state has a law protecting students’ rights to carry and self-administer asthma medication at school. Many states now have laws protecting student access to anaphylaxis medication too.
This fall, AANMA will launch a national campaign to educate students, parents, educators, and other school personnel about student rights and responsibilities. “Breathe: It’s the Law” will give students and parents the tools to work with school nurses, coaches, physicians, and educators to ensure safe and healthy learning environments for students.
Let your patients know about new state laws by displaying a “Breathe: It’s the Law” poster where patients will see it. Call AANMA at (800) 878-4403 to order your free copy.
CHASM update
Prescription nebulizer medications are being swapped out with products that are not Food and Drug Administration (FDA) approved. On behalf of the Consumer Health Alliance for Safe Medication (CHASM), AANMA staff spent several weeks in July meeting with members of Congress to talk about this medication safety issue.
AANMA also met with representatives from the FDA and the Centers for Medicare and Medicaid Services to explore ways to solve the issue and protect patients.
Indoor AIRepair en Español
Feedback from AANMA’s Hispanic focus groups is driving development of several new resources for Spanish-speaking families. What topic was of most interest to Hispanic women living with asthma and allergies, or caring for family members with asthma and allergies? Indoor cleaning tips and practical advice on what parents can do to help their families live healthy lives. AANMA is turning its “Indoor AIRepair at Home, School and Play” kit, into a helpful new tool for Spanish-speaking audiences. Copies should be available in late fall 2005.
 Latex Allergy Awareness Week
Latex Allergy Awareness Week is observed nationally each October. The American Latex Allergy Association (A.L.E.R.T., Inc.) is encouraging the observance of this week throughout the United States, October 2-8. A state proclamation was requested to officially designate the week in Wisconsin, and was subsequently issued by Governor Jim Doyle. We’re encouraging individuals in other states to also collaborate and request a proclamation for their state. See our Web site, www.latexallergyresources.org, for a sample request letter.
This year, the American Latex Allergy Association is focusing on the issue of latex glove use in food establishments. The Wisconsin Food Code was recently amended, including the addition of a note concerning the possible transmission of latex allergens from food workers’ gloves to food. Many restaurants and food establishments are still lacking education and training about the risks of wearing latex gloves during food handling. The American Latex Allergy Association plans to launch a media campaign during Latex Allergy Awareness Week in an effort to provide latex allergy education and support for food handlers.
As Latex Allergy Awareness Week approaches, please visit our Web site to learn about the latex allergy educational materials and programs available.
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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 |
 APFED Patient Education Conference
APFED hosted its third Patient Education Conference (EosConnection) in Cincinnati, OH, July 15-17. The conference was attended by more than 325 patients and physicians, from three countries and 26 states. In addition to the eosinophilic gastrointestinal disorder session, this year’s conference included a first-ever HyperEosinophilic Syndrome patient education day.
The conference covered a wide variety of subjects related to the disease group, including but not limited to, allergy/immunology, gastroenterology, pathology, psychology, databases, genetics, treatment options, future directions, advocacy and more. Speakers included Gerald J. Gleich, MD, FAAAAI, Marc E. Rothenberg, MD, PhD, FAAAAI, Jonathan M. Spergel, MD, PhD, FAAAAI, and Amal H. Assa’ad, MD, FAAAAI, as well as physicians from multiple other disciplines and facilities.
Next year’s national meeting will be held in Philadelphia, PA, and should include CME/CE courses concurrent with the patient meetings.
Children’s educational book
APFED introduced a new children’s EGID teaching book entitled Teddy the (previously troubled) Tummy. This book, co-written and sponsored by SHS-North America, teaches young children and their peers about living with eosinophilic gastrointestinal disorders. The book is narrated from the tummy’s perspective and will be available to interested physicians for their clinics. Contact Beth Mays via e-mail at beth@apfed.org for more information on receiving this book for clinic purposes.
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