An NGO on a mission to educate people to improve quality of life and achieve equitable and optimal health outcomes for adults and children living with chronic conditions: Allergy & Asthma Network

The Silicon Review

“Just Breathe” – During the COVID-19 crisis, no two words have ever been more important to our world. Allergy & Asthma Network (AAN) has been dedicated to helping the world breathe better together since 1985. When COVID-19 was declared a pandemic in March 2020, it was second nature for the organization to support its community, representing more than 60 million people living with allergies, asthma, and related conditions. Within 30 days, AAN began offering a series of COVID-19 educational webinars. To date, more than 200,000 people have tuned in to hear the latest science and hot topics on the pandemic. Next, AAN developed a COVID-19 Information Center website with information tailored to people who are high-risk for infection and/or complications. More than 3 million visitors have accessed the site to date. Finally, AAN adapted one of its long-established programs, Not One More Life, to mobilize and meet the needs of underserved communities. Rebranded as Not One More Life Trusted Messengers, the program has provided COVID-19 testing, vaccination, and treatment education to more than 2,000 people of color in the past year. AAN partnered with faith-based community organizations in predominantly Black neighborhoods and hosted ten health fairs in Atlanta and southside Chicago. Members of the Alpha Phi Alpha fraternity joined to build trust and initiate candid conversations with those who are most concerned about COVID-19 vaccination. By conducting free general health and lung health screenings in parking lots and malls, AAN is able to identify people at high risk for complications to COVID-19 and asthma. The organization provides support with telehealth coaching services free of charge. More than 100 people have completed health coaching sessions in which coaches employ motivational interviewing and shared decision-making to overcome barriers to healthcare.

Formidable leader behind the success

Allergy & Asthma Network President and CEO Tonya Winders led the charge to couple proven grassroots community outreach with innovative digital health tools. She worked with industry partners to offer remote monitoring for those with uncontrolled respiratory diseases during the pandemic. The initial outcome data was remarkable, with greater than 90% patient satisfaction. Patients reported improvement in lung function and quality of life at the end of the coaching program. “We are honored to walk alongside so many people in their journey to ‘just breathe,’” Tonya says. “COVID-19 has shined a spotlight on the health inequities in our nation. Now is the time to implement systemic changes in healthcare and prioritize lung health.” Tonya has 20+ years of experience in respiratory patient advocacy and immunology. She is the mom of five children who live with these conditions. It is her own journey as a patient and caregiver that has inspired her to dedicate her life to this cause. “We often take breathing for granted until we encounter breathing issues,” Tonya says. “It is heartbreaking that more than 700,000 people have lost their lives due to COVID-19. However, the reality is that chronic respiratory diseases, such as asthma and COPD, claim more lives each and every year in the United States. It is my goal to ensure we never take breathing for granted again.” In addition to serving as AAN President and CEO, Tonya volunteers as President of the Global Allergy & Airways Patient Platform (GAAPP), an umbrella organization representing the 600 million people worldwide living with respiratory and immunology conditions.

Tonya has co-authored 50+ peer-reviewed publications and speaks internationally as a patient advocate. She represents the patient voice at conferences and in meetings with healthcare professionals and policymakers. One of her greatest honors is serving as a patient advocate reviewer for the Global Initiative on Asthma (GINA) guidelines committee. Each year the committee establishes best clinical practices for managing asthma. Tonya also serves as Chair of the Board of Trustees for the American Respiratory Care Foundation, a nonprofit dedicated to promoting respiratory health through research, education, and patient-focused philanthropic activities in respiratory care. Tonya focuses on one mission – ending needless death and suffering due to asthma, allergies, and related conditions – in all of these activities. She credits her 15-person staff at AAN and the many community volunteers who work to achieve this mission daily. Her team works with patients, caregivers, healthcare professionals, and industry partners to deliver its programs and services across the nation. One key aspect of AAN’s culture is its commitment to the “3 Rs” – Respect, Responsibility, and Relationships. These values drive all engagement with internal and external stakeholders. Each month a staff member is recognized for going above and beyond in demonstrating these values. Volunteers are trained annually to exemplify them in all they say and do.

Allergy & Asthma Network’s four mission-area pillars are outreach, education, advocacy and research.

Outreach efforts are focused on raising awareness of allergic diseases served through traditional media, social media, digital media and live events. AAN’s media platforms and outreach earn approximately 15 billion media impressions each year.
Educational resources and programs are at the heart of AAN’s work. From webinars to podcasts, from low-literacy print and digital materials, from video blogs to educational summits – AAN is dedicated to meeting patients and healthcare professionals where they are and connecting them with medically accurate and easy-to-understand resources.
In advocacy, AAN informs and educates federal and state policymakers on key legislative issues facing families with asthma, allergies and related conditions. The organization hosts its annual Allergy & Asthma Day Capitol Hill event where hundreds gather to meet with members of Congress and advocate for healthcare legislation.
AAN’s research arm drives patient engagement in clinical trials and studies, from the earliest stages of identifying unmet needs to the final stages of post-marketing data collection. The organization is dedicated to representing the full respiratory community in clinical trials. AAN continues to contribute significant funding to support African Americans and the Hispanic/Latino community in patient-centered research that matters.

Upcoming developments

What does the future look like at AAN? The organization will remain focused on its four pillars, but the tools of the trade and manner of engagement will continue to evolve. AAN will invest heavily in updating its information technology systems in the coming year. “Data is a valuable asset,” Tonya says. “We will use it to improve operations, increase revenue, produce new revenue streams, solidify relationships with stakeholders, improve the quality of current products, establish competitive differentiation, foster innovation, and reduce risks to ensure future success.” Using data to better target patients’ needs will allow AAN to create more online registries, develop real-world research projects and build a new customer relationship management software solution. Telehealth and coaching services will continue to expand. Finally, AAN will seek innovative public-private partnerships to advance care and address the significant burden due to asthma, allergies and related conditions in the United States. Planning for future projects is already underway with Apple Health, AstraZeneca, Embleema and Sanofi/Regeneron. This year AAN set a bold and courageous goal of zero deaths – ZERO! – due to asthma, allergies and related conditions (COVID-19, COPD, other allergic diseases) by 2030. The organization’s many initiatives, along with a continued focus on patient-centered care, puts it on track to achieve those goals – so that we may all breathe better together.