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Allergy Advocacy Association - The 2015 Legislative Season for Allergy Advocacy Association
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The 2015 Legislative Season for Allergy Advocacy Association

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The 2015 Legislative Season for Allergy Advocacy Association

Our Association teamed up with veteran advocates from the Allergy & Asthma Network (AAN) and the Anaphylaxis Community Experts (ACE) group for two very successful days in support of legislation for those with life-threatening allergies. We were able to personally meet with our representatives including those in the U.S. Senate and House as well as many state legislators. We are very proud of our founder, Jon Terry, receiving an award from the AAN as the “Outstanding Patient Advocate” in recognition for his work in convincing New York state legislators to pass stock epinephrine legislation and his ongoing advocacy for epinephrine auto-injector training in schools.

It Takes a Team

By Toni Taylor
June 12th, 2015

The story of the 2015 legislative season is that great things are accomplished with great teams. From Washington, DC to Albany, NY, Allergy Advocacy worked with an impressive team of individuals and organizations to seek support of legislators at all levels of government. Our mission is to inform, educate and raise awareness about life-threatening allergies and anaphylaxis. We continue to advocate for the protection of individuals with life-threatening allergies through improved access to life-saving epinephrine.

Washington, DC

On May 7th, families and individuals from around the country who are living with allergies gathered in Washington, DC with medical professionals at the invitation of the Allergy & Asthma Network (AAN) who celebrated their 30th Anniversary. Activities included walking the halls of Congress (supported by a day of training to do so effectively) and hearing the latest in medical research and treatment of allergies. Also included was an award ceremony, recognizing the great work of advocates from around the country.

As Marketing Director for Allergy Advocacy Association, I was particularly pleased by the great job The Network did setting up appointments with congressional representatives & training delegates. Our advocacy group stayed firmly “on message”; we thanked everyone for their votes for previously enacted nurse authorized stock epinephrine laws and sought support for new entity stocking legislation.

With these new skills and information in hand, it was inspiring to work with a group of New Yorkers as they told their stories to staff members of the NYS Senate and House delegation: Sen. Charles Schumer (D), Sen. Kirsten Gillibrand (D), and Rep. Louise Slaughter (D) all of whom were very interested in what we had to say and promised to support our efforts. In addition to useful training and team building, we developed great friendships and partners in the push towards a world free of life-threatening anaphylaxis.

Toni Taylor and Jon Terry
Toni Taylor and Jon Terry

On the medical front, we heard several presentations from medical professionals from around the country on the current state of allergy research and treatment. Dr. Jay Portnoy of Children’s Mercy Hospital in Kansas City, MO shared new research that climate change tends to extend the allergy season every year. There was a panel made up of one child’s health care team; they discussed how a Patient-Centered Collaborative Care team can work together. Dr. Stacie Michael of Le Bonheur Children’s Hospital in Memphis, TN talked conference delegates through how their patient-centered medical team assists patients to manage their allergies by helping them navigate the medical, pharmaceutical, and social systems and addressing road blocks as they arise.

Jon Terry, Founder and President of Allergy Advocacy Association, connected with the Anaphylaxis Community Experts (ACE) group to gather updated information to share at health fairs and presentations. These personal affiliations help to strengthen the relationships that are at the core of the effectiveness of ACE & AAN.

ACE volunteers at AAN Conference 2015 in Washington, DC.
ACE volunteers at AAN Conference 2015 in Washington, DC.

Asthma & Allergy Network’s 30th anniversary celebration was held on the Capital Terrace at the Newseum. With the capital in the background, Tonya Winders, President and CEO of AAN presented Jon with the Outstanding Patient award in recognition for his work in convincing New York state legislators to pass stock epinephrine legislation and his ongoing advocacy for epinephrine auto-injector training in schools.

Tonya Winders & Jon Terry

By following the example of long established, experienced and dedicated national organizations like AAN, the Allergy Advocacy Association has shaped our own grass roots program of awareness, alertness and action.

 

 

 

Albany, NY

Using the energy, skills, and confidence gained from our meetings in Washington DC, the Allergy Advocacy Association team gathered in Albany for our third Legislative Action Day on May19th. Using our booth as a base camp, the team spoke with passers- by, walked the halls of the NYS capitol, met with legislative staffs, and worked the lounges outside the Assembly and Senate foyers.

Allergy Advocacy Association volunteers at the NYS Capitol in Albany
Allergy Advocacy Association volunteers at the NYS Capitol in Albany. Photo by Neal P. Kemp.

Craig Bahr and Neal Kemp staffed the booth for the day, gathered signatures in support for the Emergency Allergy Treatment Act (EATA). Craig and Neal also shot great photo ops with legislative supporters of Nurse Authorized Stock Epinephrine (NASE) and the Student Medications Carry Act. Both bills were signed by Governor Andrew Cuomo and enacted last year. Ellen Bahr and Jon Terry walked the halls of the NYS Assembly and Senate thanking legislative supporters of the NASE and asking support for EATA. Janet Goldman & Toni Taylor worked the foyers outside both separate chambers. Beyond a few questions to clear up around the safety of “Good Samaritan” administering of epinephrine, legislators were generally supportive of future passage of EATA.

NYS Senator Kemp Hannon and Jon Terry
NYS Senator Kemp Hannon and Jon Terry. Photo by Neal P. Kemp.

Statistics are now available that show how improved access to epinephrine can save lives.

According a study by Northwestern Medicine published in the American Journal of Preventive Medicine, during the 2012-13 school year the Chicago Public Schools stocked epinephrine injectors at all schools. Nurses and other trained workers administered the medication 38 times. 92 percent of those who received an epinephrine shot were students, and 55 percent of those who got injections were not aware they had an allergy. Our association believes that expanded access to epinephrine auto-injector devices via EATA will help the public at large in the same way that NASE helped in our school districts.

Jon Terry, NYS Assemblyman Tom Abinanti and Ellen Bahr
Jon Terry, NYS Assemblyman Tom Abinanti and Ellen Bahr. Photo by Neal P. Kemp.

Together our Team can make a Difference!

The lesson we learned from the 2015 legislative season is that a dedicated, passionate team can have incredible impact in reducing the incidence of life-threatening allergic reactions. We at Allergy Advocacy Association invite you to join our team, your local ACE group, and the Allergy & Asthma Network. All of these organizations can equip you with the information, skills, and like-minded people to help you in achieving our shared vision: Not another life lost to anaphylaxis; not another life lost to any life-threatening allergies

The information provided on this site is in no way intended to be a substitute for medical advice,
diagnosis, or treatment with a licensed physician.
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