Allergy & Asthma Network CEO Lynda Mitchell calls future ‘really bright’ for care

Key takeaways:

• Allergy & Asthma Network prioritizes patient education and access to care.
• Programs include free online asthma coaching and an advocacy day in Washington, D.C.

With more than 30 years of advocacy in allergy and asthma, Lynda Mitchell, MA, CAE, is optimistic as she takes the reins as CEO of Allergy & Asthma Network.

“The future is really bright,” Mitchell told Healio. “We just have to keep our eye on meeting people’s needs.”

As CEO, Mitchell said she will continue the organization’s efforts in providing patients with reliable information and in improving access to care.

“Those are challenges that our community deals with every day,” Mitchell said.

Digital grassroots

Mitchell began her asthma and allergy journey in 1990 when her newborn child developed allergies and other related conditions. She then left her position as a consultant in health care information and quality management and began moderating a listserv for parents of children with food allergies.

“I started to find other moms like me online. We were trying to figure out how to take good care of our children, because there wasn’t a whole lot of information out there,” she said.

Doctors could provide a diagnosis, Mitchell said, but families had to figure out the day-to-day living with food allergies on their own.

“Comparing notes with other moms really was helpful because we could collectively figure out lifestyle modifications,” Mitchell said. “It was basically an opportunity to get moms together to figure things out together.”

As word spread, by 1999, the listserv had grown to about 2,000 members, underscoring the community’s broad needs. About the same time, Mitchell said, she met a futurist who said that the internet and online communities would play a significant role in how people found health information and support.

“What she had predicted was that the internet was going to become really big for people dealing with chronic illnesses and their caregivers and that they were going to be going online to seek solutions from each other,” Mitchell said.

This expectation gave Mitchell the confidence that her bigger plans for her listserv would succeed.

“After I got out of graduate school, I had a business plan to turn that into an online community for families raising children with food allergy,” Mitchell said.

Mitchell founded the Kids with Food Allergies Foundation, which she led as CEO for 12 years before assuming the position of chief operating officer of the Asthma and Allergy Foundation of America and later joining Allergy & Asthma Network in 2019.

Information gaps

The struggle that patients experienced in those early years online continues today as families search for accurate information about allergy and asthma.

“There’s millions and millions of people who have allergies and asthma, and a lot of them still to this day don’t know where to go to find credible information to help them manage their conditions best,” Mitchell said.

Information on Allergy & Asthma Network’s website is optimized so patients who use Google find it before they see other, less credible sources, Mitchell said. The organization also focuses on sharing its information with health care providers so they can use it when they engage with patients.

“Then there are people who don’t even go to health care professionals for that information, so we need to go into communities and meet people where they are,” Mitchell said.

As part of the Trusted Messengers community outreach program, Allergy & Asthma Network partners with churches, schools and other community centers in underserved areas to screen people for asthma, allergies and eczema and distribute information to educate people about these conditions.

“It’s our signature health equity program,” Mitchell said. “It’s built on the belief in community-led solutions and partnerships.”

Allergy & Asthma Network launched the program in 2020 to screen for COVID-19 and lung health conditions in vulnerable populations and provide information. In 2021, the program expanded to offer COVID-19 vaccinations. Today, its focus is on asthma and other allergic diseases.

“We meet people one-on-one. We screen them for asthma, and we screen them for food allergies and eczema, and then our certified asthma educators talk with them about how to manage their conditions and offer educational resources,” Mitchell said.

Participants who screen positively for asthma are invited to enroll in a free, one-on-one, 6-week online asthma coaching program, with follow-ups at 7 and 13 months. Both coaches in the program are certified asthma educators. One is a respiratory therapist who is bilingual in English and Spanish, and the other is a physician assistant.

“The best part is that it’s an asthma self-management education program,” Mitchell said. “People learn how to use their inhalers correctly, and they learn about their asthma action plan.”

Collected data from the program indicate that people who complete it have better control of their asthma, less use of albuterol inhalers for emergencies and fewer ED visits and hospitalizations, Mitchell said.

“It’s a great program, so we’re really proud of it. We want to expand it so we can reach more people,” Mitchell said. “It really does benefit people, especially in under-resourced communities.”

Mitchell added that patients who are Black or Hispanic are more likely to experience negative outcomes with asthma.

“We want to address the needs in those communities by going right to the people and offering this free asthma coaching program,” she said.

Access to care

Even with the correct information, patients may have difficulties getting the care they need.

“There are doctor shortages. There are people in rural areas who can’t connect to specialists like they should,” Mitchell said.

Patients who experience delays in diagnosis due to these barriers face greater risks for negative outcomes, Mitchell said. For example, people who are unaware that they have a food allergy may wind up in the hospital after eating an unknown allergen.

Chronic urticaria is another problem, Mitchell said.

“People can have that undiagnosed for years, and they suffer terribly until they finally do get the right diagnosis,” she said. “Sometimes it’s because they don’t get to the right specialists to get the right diagnosis.”

Treatment decisions and insurance denials can be barriers to care even after that diagnosis happens, Mitchell continued, but information can help patients who face these obstacles.

“We also create educational content so people can navigate these access barriers,” Mitchell said. “Sometimes they just need to know the reasons for the insurance denial of a medication so that they can have a conversation with their doctor about how they can appeal or explore alternatives.”

Allergy & Asthma Network focuses on changing policies and legislation to enable this access, because it is so complex and because that is where efforts will have the biggest impact, Mitchell said.

Each May, about a hundred of its members and allies meet with members of Congress or their representatives on Allergy & Asthma Day on Capitol Hill to discuss policy priorities that would benefit the allergy and asthma communities, Mitchell said.

“We do an online campaign that same day we’re on Capitol Hill, so people can participate virtually and send emails and letters to their Congressional representatives in order to influence legislation,” she said.

Previous efforts have led to schools stocking supplies of epinephrine and albuterol so children and other people on campus have access to medication during asthma attacks or anaphylaxis.

“And not just kids,” Mitchell said. “About 25% of the episodes of first time anaphylaxis at school actually involve a teacher, coach or other adult in the school.”

Getting involved

Options for patients with allergies and asthma are improving too, Mitchell said.

“These are really exciting times in terms of research. It’s leading to new treatments for people with conditions who had limited options in the past,” she said.

Innovative care has improved outcomes in moderate to severe asthma, eczema, chronic hives, food allergy and mastocytosis, Mitchell said, in addition to needle-free epinephrine on the horizon.

“These are folks who didn’t have any hope in the past, and now they have options,” she said.

But again, it begins with education, Mitchell said.

“My goal is to reach more people with our high-quality information so it can improve more lives,” Mitchell said. “We need to do that in partnership with others, because we can’t do it alone.”

The Allergy & Asthma Network website and its social media include information about the group’s services as well as about how patients and providers alike can participate in these programs, including volunteer forms.

“We would love everybody to connect with us on one or more of those platforms,” Mitchell said. “We regularly update them almost daily with new information.”

Respiratory therapists and asthma educators are particularly welcome to join the Trusted Messengers community outreach program, Mitchell said.

“People need to have the right information. They need to know how to manage their condition,” Mitchell said. “They need to know how to learn how to be empowered, to have informed conversations with their doctors.”

Reference:

• Allergy & Asthma Network names Lynda Mitchell, CAE as chief executive officer. https://allergyasthmanetwork.org/news/lynda-mitchell-named-ceo-2023/. Published Sept. 7, 2023. Accessed Sept. 26, 2023.

For more information:

Lynda Mitchell, MA, CAE, can be reached at lmitchell@allergyasthmanetwork.org.