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Members Academy News: November 2005
Lay Organizations
Immune Deficiency Foundation
40 West Chesapeake Avenue
Suite 308
Towson, MD 21204
Phone (800) 296-4433
www.primaryimmune.org
IGIV reimbursement update
On September 7, the IDF and AAAAI joined patient groups, infusion suites, GPOs, distributors and manufacturers of IVIG to unite in their request that the Centers for Medicare and Medicaid Services (CMS) adjust reimbursement for IVIG for the hospital outpatient setting for 2006. We requested that CMS consider an add-on payment or furnishing fee in addition to the proposed reimbursement. Alternatively, CMS may consider implementing a dampening mechanism as they implemented in 2003 rulemaking. This dampening effect, which required a reduction in reimbursement of no greater than 15%, would blunt the substantial blow that hospital outpatient facilities would incur in 2006.Additionally, the IDF, AAAAI and the Joint Council of Allergy, Asthma and Immunology (JCAAI) are working with CMS and the American Medical Association (AMA) to properly classify IVIG as a high complexity administration procedure, therefore reimbursing IVIG under the chemotherapy administration code as a biologic response modifier therapy.
On September 6, approximately 30 members of Congress requested that Secretary Leavitt act upon the recommendations made by the Health and Human Services Advisory Committee on Blood Safety and Availability (ACBSA) on May 16, declaring a public health emergency, and enabling CMS to apply alternative mechanisms for determination of the reimbursement schedule of IVIG products. ACBSA recognized the “worsening crisis” of IVIG access and how the crisis places “patients’ lives at risk.” On September 19, the Committee recommended that Leavitt take immediate steps to increase reimbursement for non-hospital IVIG therapy to a level consistent with current market pricing, by reclassifying IVIG as a biologic response modifier and declaring a public health emergency to address the short-term problem. The Committee also recommended that CMS work with Congress to establish a long-term stable and sustainable reimbursement structure.
IDF values its partnership with AAAAI on the IVIG reimbursement crisis. Please visit IDF’s Web site, www.primaryimmune.org, to engage in our grassroots, letter-writing campaign to Congress and CMS.
Food Allergy & Anaphylaxis Network
11781 Lee Jackson Highway, Suite 160
Fairfax, VA 22030
Phone (800) 929-4040
Fax (703) 691-2713
www.foodallergy.org
5th annual Food Allergy & Anaphylaxis Alliance Conference
International representatives attended a four-day conference hosted by FAAN in Fairfax, VA, in September. Non-profit organization leaders from Australia, Canada, England, Italy, Japan, Netherlands, New Zealand, United Kingdom and the United States spent the week strategizing about issues including access to specialists and epinephrine prescriptions, food labeling, and school management of food allergy, to benefit the lives of food-allergic individuals in these countries. The group’s 2006 initiatives will be posted online in December at www.foodallergyalliance.org.Patient perspective
Parents are often anxious for their children to outgrow food allergies and are disappointed in their physicians’ inaccurate predictions. Remember that parents will take every word you say to heart. If pressed to make a prediction, err on the side of caution.Labels are changing. With the implementation of the Food Allergen Labeling and Consumer Protection Act, effective January 1, 2006, more food products that were previously “safe” may now contain an allergen. The food industry and FDA warn us that patients and their caregivers should not “guess” at the safety of a product. When in doubt, if the product contains an allergen, it should be avoided. Please stress this to your patients so that we can help them avoid an allergic reaction. Visit FAAN’s Web site for the latest information on the new labeling law and answers to common questions.
Walk for food allergies: moving towards a cure
Our nine walks around the country were a tremendous success. They attracted thousands of people, including families of children with food allergies, physicians, school staff and celebrities. Proceeds from the events will be used to support FAAN’s education and research programs. Plans are underway for the 2006 walks. Dates and locations will be posted on our Web site.
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
The Foundation recently released the 2005 Fall Allergy Capital rankings and found that Chicago, IL, is at the top of the list. The ranking is defined as one of the “most challenging places to live if you have fall allergies.” The Fall Allergy Capital rankings are an annual research project that looks at data for 100 U.S. cities, such as recorded pollen levels, medication utilization per capita and the number of board certified allergists per capita. This is the third year in a row that AAFA has conducted this research, bringing outstanding national attention to the issue of seasonal allergies. A full list of the rankings is available at www.AllergyCapitals.com, as well as a description of the methodology and data sources.Awareness: sleep, learn, play
A national patient survey by AAFA revealed that a majority of parents of pediatric asthma patients said their children’s asthma was “in control,” even though asthma keeps them awake, keeps them home from school, and interrupts playtime. As a result of this gap between perception and reality, AAFA created a national awareness campaign called “Sleep/Learn/Play,” offering a common language for patients, parents and physicians to use to discuss asthma control. Visit www.sleeplearnplay.com to find free tools and learn more.Advocacy: hurricane relief
AAFA volunteers and staff nationwide extend our sympathies to victims of hurricanes Katrina and Rita, and to the millions displaced by other disasters. For people with asthma and allergies, access to medications and care are critical. AAFA has compiled a list of resources to help patients, healthcare providers and volunteers. Visit www.aafa.org, and click on the Hurricane Relief section for information such as local, state and federal healthcare resources, health insurance information, volunteer opportunities, prescription assistance programs, and links to other sites. For more information contact Mo Mayrides, director of public policy, at (202) 466-7643, ext. 273 or e-mail mo@aafa.org.
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
AANMA and allergists/immunologists: 20 years strong
November marks AANMA’s 20th anniversary of helping America breathe easier, one family at a time. AANMA advocates for patient access to specialty care, patient education services, and FDA-approved medications and devices. We are concerned about national health policies that create barriers to appropriate care. AANMA provides patients with practical resources and individualized services, including patient aids for use in medical care settings. Join AANMA today.AANMA/CHASM members meet with CMS
The Consumer Health Alliance for Safe Medication (CHASM) is concerned about protecting patient access to safe nebulizer medications. CHASM met with the Centers for Medicare and Medicaid Services (CMS) to demonstrate ways existing policies provide unintended financial incentives for pharmacy businesses to make and distribute substandard and/or illegal nebulizer medications. We presented reports of unauthorized substitution of FDA-approved nebulizer medications without physician or patient awareness. CMS encouraged CHASM members to continue collecting case reports.
Patients may be unaware that they are using nebulizer medications that are not FDA-approved for safety, efficacy or sterility. Report cases to: mwhitfield@aanma.org.AANMA and CHASM members are distributing free “Do Not Compound this Nebulizer Medication,” self-inking, prescription-pad stamps and educational information.
AANMA supports National Children’s Study
AANMA President Nancy Sander spoke at the launch of the National Children’s Study, a 21-year research effort to examine the interaction of environment, genetics and human behavior on children’s health. The effort is mandated by Congress and funded through 2006. Contact congressional members at www.capwiz.com/aanma/ to ensure continued funding for the research program.
The American Latex Allergy Association
3791 Sherman Road
Slinger, WI 53086
Phone (888) 972-5378
Fax (262) 677-2808
www.latexallergyresources.org
E-mail alert@execpc.com
New York food bill
Please support New York’s Assembly Bill #A05499, that calls for “food service establishments to post notice relating to the use of rubber latex gloves and notifying of the use thereof.” The bill was not considered during the last legislative session due to lack of support, and our New York legislative contact, Mel Schulweis, has been working to ensure that it’s reintroduced in the upcoming legislative session.
The American Latex Allergy Association has submitted a letter of support, along with the AAAAI, ACAAI and several lay organizations. It’s important for the Assembly to hear from New York residents as well. Latex glove use in restaurants prohibits many latex-allergic people from eating freely away from home. Supporting legislation is one of the best ways to provide a latex-safe dining environment.Please send your letter of support to:
Hon. Richard N. Gottfried
Legislative Office Building #822
Albany, New York 12247Please copy our legislative contact on the letter:
Mel Schulweis
15 Glenbrooke Drive
White Plains, New York 10605Vial stoppers
The American Society of Health-System Pharmacists (ASHP) is working to obtain mandatory labeling for medication vial stoppers and pre-filled syringes that may contain latex. ASHP’s House of Delegates approved the move “to urge the Food and Drug Administration to mandate that manufacturers of medications and medication-device combination products include labeling information on whether any component of the product, including its packaging, contains natural rubber latex.”The following article gives an overview of the status of this issue, current practice, literature findings and practical recommendations:
Hamilton RG, et al. “Administering pharmaceuticals to latex-allergic patients from vials containing natural rubber latex closures” American Journal of Health-System Pharmacy. 2005 Sep 1;62(17):1822-7View the article in full at: www.ajhp.org/cgi/content/full/62/17/1822
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
Trainee travel grants
In an effort to encourage individuals to pursue careers in research of eosinophilic disorders, APFED will award four $1,200 trainee travel grants. These grants are for use toward travel, meeting registration and presentation-related fees for a physician who has been approved to present eosinophil-related research at a 2006 scientific meeting. More information, as well as application instructions, is available at www.apfed.org.Web site expanded for professional members
The portion of our Web site dedicated to healthcare professionals has undergone a recent expansion. Features include a summary of the 2005 International Eosinophil Society Meeting held in Bern, Switzerland in May, information on grants, and patient education materials, which include an extensive list of eosinophil-related literature. Resources may be ordered online, including disease-specific brochures and children’s educational resources.Assistance for hurricane victims
APFED has launched an extensive campaign to assist patients with eosinophilic disorders affected by hurricanes Katrina and Rita. Our membership has joined forces and compiled a database of donated formula and enteral supplies available to assist families in need. Physicians wishing to refer hurricane-affected patients for assistance may contact beth@apfed.org or speak with Beth Mays at (713) 498-8216.Grand rounds
APFED has helped bring speakers to Atlanta, GA, and Tampa, FL, this year. We will continue to encourage eosinophil-related educational forums for healthcare professionals.
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