Allergy & Asthma Network Mothers of Asthmatics (AANMA)

Making An Impact On Capitol Hill

Published May - 23 - 2013 Print This Post

 

Are you paying more and getting less for your healthcare dollars? Patients’ rights to routine medical care are increasingly in doubt – all in an effort to save money in our overburdened healthcare system. Truth is, asthma, allergy and anaphylaxis require professional medical care – these are NOT do-it-yourself diseases.

That was the key message Allergy & Asthma Network Mothers of Asthmatics (AANMA) brought to Congress on May 9 at the 16th annual Allergy & Asthma Day Capitol Hill (AADCH) in Washington, D.C.

Apolo Anton Ohno (center) joins AANMA Chief Operating Officer Tonya Winders (left) and AANMA President and Founder Nancy Sander at the Allergy & Asthma Health Fair.

Addressing families, members of Congress, leading physicians and healthcare professionals at a Congressional press briefing, AANMA Chief Operating Officer Tonya Winders stressed the importance of accurate diagnostics and routine monitoring of asthma and allergies by primary care doctors, allergists and immunologists in a collaborative asthma care model.

Citizen’s Petition: AANMA and six prominent organizations filed a Citizen’s Petition with the Food and Drug Administration (FDA) to exempt allergy and asthma medications from a new paradigm under consideration that makes certain prescription medications over-the-counter and shifts diagnostic and treatment decisions to pharmacists and technologies such as kiosks.

Signatories included: American Academy of Allergy, Asthma & Immunology (AAAAI), American Association of Respiratory Care, American College of Allergy, Asthma & Immunology (ACAAI), American Latex Allergy Association, American Thoracic Society and the COPD Foundation.

“Asthma and life-threatening allergies require accurate diagnosis, monitoring and patient education. There are no shortcuts and it can’t be done over-the-counter or in a kiosk,” says Nancy Sander, AANMA president and founder. “We have evidence-based treatment guidelines proven to save lives and money. Patients and families deserve nothing less.”

AANMA Chief Operating Officer Tonya Winders speaks with media about expanding stock epinephrine in U.S. schools.

Protecting Patients From Fraud: Congressional representatives agreed to help AANMA eliminate allergy testing and immunotherapy schemes taking place at practices across the country.

“Allergy technicians” posing as physicians test patients for environmental and sometimes food allergies and administer treatment.

“All the while, patients think this is quality care they are receiving, when in fact it is not,” said Tonya Winders, AANMA Chief Operating Officer.

The allergy evaluation or treatment is not evidence-based and in some cases may not be FDA-approved or legally reimbursable by private or government insurance. Read more: www.aanma.org/PatientsNotPiggyBanks.

Rep. Joe Barton (R-TX) pledged support to end deceptive allergy practices and promised to follow the FDA paradigm issue closely.

Rep. Carol Shea-Porter (D-NH), a mother of two sons with asthma, helped AANMA with the 2013 recertification of the Congressional Allergy & Asthma Caucus.

AANMA urged Congress to:

  • Remove asthma and anaphylaxis medications from the FDA paradigm under consideration.
  • Stop the fraud and abuse in allergy testing and immunotherapy.
  • Increase funding for asthma and allergy programs such as CDC’s National Asthma Control Program and EPA’s Healthy Homes Initiative.
  • Require FDA to make manufacturers put dose counters on all brand and generic metered-dose inhalers.
  • Prioritize student health and safety: a school nurse for every school.

Reps. Joe Barton (R-TX), Bill Cassidy, MD (R-LA) and Carol Shea-Porter (D-NH) addressed AADCH, hosted at the Rayburn House Office Building on Capitol Hill. Barton pledged support to end deceptive allergy practices and promised to follow the FDA paradigm issue closely.

Shea-Porter, a mother of two sons with asthma, helped AANMA recertify the 2013 Congressional Allergy & Asthma Caucus, first formed in 2011. “This is about education, research and investment, and Congress has a role,” Shea-Porter said.

Keynote speaker Apolo Anton Ohno, a short-track speed skater and the most decorated American winter athlete of all-time, shared his story of overcoming exercise-induced bronchospasm (EIB), a temporary narrowing of the airways during or after exercise that makes it difficult to breathe.

AADCH guest speaker and short-track speed skater Apolo Anton Ohno shared his story of overcoming exercise-induced bronchospasm (EIB).

“My road to success on the ice has not always been a smooth one,” Ohno said. “Obstacles and challenges always presented themselves. Probably the most significant one in my life was EIB. I was diagnosed in 2000. I did not even know I had it.

“I met with my team doctors and followed their protocol to control my EIB symptoms. That same year, after I implemented their protocol, I had my best season ever. I won every single race – and thus began a career that has gone on for 12 years.

“I’m pleasantly surprised to find people who are always inspired, who have EIB but have not allowed it to hinder their hopes and their dreams of becoming an athlete or becoming more active.”

James Kiley, PhD, of the Heart, Lung & Blood Institute, addressed AADCH about ongoing asthma and allergy research, particularly as it relates to disparities in care. Representing FDA, James Valentine, MHS, introduced the new Patient Network web site – www.patientnetwork.fda.gov – which offers information on how to get involved with and comment on regulatory decision-making.

ACAAI President Richard Weber, MD, and AANMA board member Talal Nsouli, MD, highlighted the importance of asthma and allergy screening and directed attendees to AANMA’s Allergy & Asthma Health Fair in the Rayburn Foyer. Visitors to the health fair were invited to get a free allergy, asthma or EIB screening and consult with a board-certified allergist.

Rep. Bill Cassidy, MD (R-LA), Congressional Co-Chair for AADCH, said AANMA's advocacy work is "making a difference" on Capitol Hill.

AADCH concluded with a powerful reminder of AANMA’s mission to end needless suffering and death due to asthma, allergies and related conditions.

Laura Ledford, a mom from Brandenburg, Ky., spoke about her 9-year-old son Christopher, who died suddenly last November after an asthma attack.

“Asthma and life-threatening allergies need to be labeled the chronic illnesses they are,” Ledford said. (Read Ledford’s story in an upcoming issue of Allergy & Asthma Today.)

On May 8, AANMA hosted its first-ever Summit at the Hyatt Regency Capitol Hill. Healthcare professionals, representatives from the Centers for Disease Control and Prevention (CDC) and Environmental Protection Agency (EPA), patients and families came together to find solutions and develop advocacy talking points to deliver to Congress.

Linda Cox, MD, president of AAAAI, announced a national registry of patients with allergy, asthma and immunodeficiency diseases to better monitor health outcomes. Cox also shared new web sites aimed at educating primary care resident physicians about allergy and asthma.

Gayle Higgins, a nurse practitioner at St. Christopher’s Hospital For Children in Philadelphia, shared a successful collaborative asthma care model via the A-HA! Clinic. High-risk asthma patients and caregivers receive education, in-home inspections and environmental control measures.

Read more about issues AANMA addressed with members of Congress:

– By Gary Fitzgerald


Thank You to Our Sponsors:

American College of Allergy, Asthma & Immunology, American Academy of Allergy, Asthma & Immunology, Boston Scientific, Genentech Inc., GlaxoSmithKline, Mylan Specialty LP, sanofi, Sunovion, TEVA Respiratory, Thermo Fisher Scientific

Thank You to Our Congressional Co-Chairs:

Rep. Bill Cassidy, MD (R-LA)
Rep. Nita Lowey (D-NY)