30th Anniversary Celebration: A Whirlwind Week to Make a Difference for Patients, Families
Allergy & Asthma Network hosted its 30th Anniversary Celebration May 5-8 in style – but also with its trademark determination to give voice to patients and families and highlight issues that make a difference to their quality of life and access to healthcare.
In a successful whirlwind week in Washington, D.C., The Network canvassed Capitol Hill to advocate for asthma- and allergy-related legislation and funding, hosted an educational day to discuss current developments and trends in healthcare, and screened dozens of people for asthma and allergies at a Washington Nationals baseball game.
At an Awards Dinner at the Newseum, The Network paid tribute to founder Nancy Sander and patients, healthcare providers, industry partners and staff members who made an impact in allergy and asthma care the last 30 years. U.S. Environmental Protection Agency Administrator Gina McCarthy presented 2015 National Environmental Leadership Awards in Asthma Management to Green & Healthy Homes Initiative in Baltimore and Le Bonheur Children’s Hospital in Memphis.
“It was an inspiring time of looking back on accomplishments and taking stock of where the allergy and asthma community is today – recognizing the hurdles that remain for patients and families, and highlighting innovations on the horizon,” says Tonya Winders, President and CEO of The Network.
More than 100 volunteers and advocates participated in the 18th annual Allergy & Asthma Day Capitol Hill (AADCH) on May 6. They visited more than 150 Congressional offices.
Among the issues discussed:
- Expand telemedicine services to recognize respiratory therapists as providers and include Medicaid coverage for asthma care provided through telemedicine services, which include videoconferencing, mobile phone apps, electronic health record technology, and more.
- Increase funding for the U.S. Centers for Disease Control and Prevention (CDC) Healthy Homes programs to provide in-home asthma interventions and to help reduce exposures to asthma triggers such as mold and pests.
- Co-sponsor the Senate School Asthma Management Act to improve school support of students with asthma – leading to improved attendance rates, greater alertness and physical stamina, and fewer medical emergencies.
- Urge the Department of Health and Human Services (HHS) to research and pilot school-based healthcare delivery models, including those that include school nurses into care teams.
During a Congressional Briefing held at the Rayburn House Office Building on Wednesday, Sen. Bill Cassidy, MD (R-LA), discussed the 21st Century Cures legislation to boost biomedical innovation and speed up U.S. Food and Drug Administration (FDA) approvals on new medications for conditions that lack cures.
“There’s opportunity for us,” Sen. Cassidy said. “Imagine if we can find the cause – not just the abnormal allergic response or the asthma attack in general – for a particular person with a certain genetic makeup. That is our aspiration.”
Among the guest speakers and advocates was Jerome “The Bus” Bettis, the former NFL player and 2015 Pro Football Hall of Fame inductee. Bettis attended the first AADCH in 1998 to talk about how he manages his asthma on and off the field; this year he rejoined The Network to share his story of managing his shellfish allergy.
“I didn’t know that anaphylaxis was life-threatening,” Bettis said. “Once I became educated about it, I understood there was a need for greater awareness, so that people who have a food allergy understand it and realize there are avenues out there for treatment.”
After the briefing, Bettis made numerous congressional visits to advocate for asthma and allergy initiatives in Congress. Natalie Napolitano, chair of The Network’s Board of Directors, was among the advocates who joined him.
The Network also spotlighted Chris Stiffler, founder of Vicinity Health in Phoenix, Arizona, who was developing an asthma management device that attaches to a smartphone and helps predict an asthma flare. Unexpectedly, Chris died of an asthma flare in June 2014, leaving behind his wife Sandy and two children.
“You never know what can happen, it just happens,” Sandy told the audience. “We want the public to know an asthma attack is equal to a heart attack. It can take your life within seconds.”
On Thursday, May 7 at the Liaison Capitol Hill DC hotel, leading allergists addressed patients, healthcare professionals and industry leaders on the past, present and future in asthma, food allergies and environmental allergies, as well as the impact of climate change on respiratory conditions nationwide.
An interactive panel highlighted the many roles within an ideal patient-centered healthcare team, from allergist and pediatrician to pharmacist and school nurse. The importance of collaboration, listening to the patient, and taking a proactive instead of reactive approach were key discussion points.
On Friday, May 8, The Network joined Meda Pharmaceuticals and the Medikidz superheroes to release the first of three “Medikidz Explain Asthma” comic books at The Playseum in Washington, D.C. The story includes a character based on a real child with asthma, Savion Johnson from Columbus, Ohio.
Later on Friday, The Network hosted free allergy and asthma screenings for about 50 people prior to a Washington Nationals baseball game.