Law would improve access to life-saving medical treatment

Washington, D.C. – This week, the Asthma and Allergy Foundation of America (AAFA) is proud to join the unwavering advocacy efforts of Angel and George Mueller, parents of Dillon Mueller, in support of Dillon’s Law (H.R. 3910).

Introduced by Congressman Glenn Grothman (R-WI) and Congresswoman Debbie Dingell (D-MI), Dillon’s Law is a bipartisan bill that incentivizes states to allow trained individuals to carry and administer life-saving epinephrine in emergency situations and to establish civil liability protections for those individuals.

Dillon’s Law is named after Dillon Mueller, an 18-year-old boy whose life was tragically cut short due to a severe allergic reaction to a bee sting. Dillon had never experienced such a reaction before and did not have a prescription for epinephrine.

Left to right: George Mueller and Angel Mueller, Dillon’s parents, and Kenneth Mendez, CEO and President of AAFA

“The Dillon Mueller case is exactly why we need to expand access to rescue medication like epinephrine to treat anaphylaxis,” said AAFA president and CEO Kenneth Mendez. “Dillon’s Law will make it more likely that someone experiencing anaphylaxis receives emergency epinephrine when they need it for a life-threatening allergic reaction.”

Yesterday, Mendez and the Muellers met with Reps. Grothman and Dingell to express AAFA’s strong support of Dillon’s Law and our gratitude for their leadership on behalf of the nearly 1 in 50 Americans at risk of anaphylaxis. Anaphylaxis, a severe allergic reaction, must be treated with epinephrine right away to provide the best chance for improvement and prevent serious, potentially life-threatening complications.

Left to right: George Mueller, Angel Mueller, Rep. Debbie Dingell (D-MI)

Left to right: Jenna Riemenschneider, AAFA’s Senior Director of Advocacy and Policy; George Mueller, Dillon’s father; Rep. Glenn Grothman (R-WI); Angel Mueller, Dillon’s Mother; and Kenneth Mendez, CEO and President of AAFA

“The passing of Mischicot native Dillon Mueller was a tragedy,” says Rep. Grothman. “By making epinephrine more readily available, we can ensure no parent has to endure the loss of a child in the event of a life-threatening allergic reaction due to anaphylaxis. I am honored to continue to work hand-in-hand with Dillon’s parents, Angel and George Mueller, who are diligently promoting how Dillon’s Law can play a pivotal role in saving lives across the nation.”

“No parent should have to grieve the loss of a child from anaphylaxis. Timely access to an EpiPen can be the difference between life and death, and we as a nation must be doing more to prepare communities to respond to anaphylaxis,” says Rep. Dingell. “I’m proud to join Rep. Grothman and the Mueller Family in supporting Dillon’s Law which not only honors Dillon’s memory but will also save lives. We owe it to the millions of Americans living with potentially life-threatening allergies.”

“My husband George and I are visiting Washington, D.C. to meet face to face with lawmakers to share our story and our mission to save lives in Dillon’s memory. This legislation is lifesaving, bipartisan and allows normal everyday people to become heroes when every second counts,” says Angel Mueller. “The original Dillon’s Law in our home state of Wisconsin was signed by Gov. Scott Walker at Mishicot High School in December 2017 and we then began our ‘Do it for Dillon’ epinephrine training program.  Over 3,000 everyday people have since taken our course and 12 lives have been saved. They are the heroes that we must continue to empower. Dillon’s Law saves lives.”

Left to right: Angel Mueller, Rep. Larry Bucshon (R-IN), George Mueller, Jenna Riemenschneider, AAFA’s Senior Director of Advocacy and Policy

Washington D.C., September 20, 2023 — The Asthma and Allergy Foundation of America (AAFA) is disappointed that the epinephrine nasal spray known as neffy did not receive FDA approval but understands the agency is requesting additional data.

Currently, epinephrine is only available in devices that use needles. A nasal spray would give people managing severe allergic reactions (anaphylaxis) more options. And as AAFA told the FDA earlier this year, people at risk of anaphylaxis deserve to have a choice in treatment. In an AAFA study on food allergies in 2019, nearly three out of four people reported not using or receiving a dose of epinephrine during a recent severe allergic reaction. Fear of epinephrine and needle phobia are significant reasons why people are hesitant or delay treatment for a condition that requires immediate action.

Drug safety and efficacy are important to patients and caregivers. Epinephrine itself has a long-proven safety record. The FDA has requested an additional study on epinephrine nasal spray use by people with allergic rhinitis — which could further delay this product from getting approval by at least a year.

We hope needle-free epinephrine drug manufacturers and the FDA are able to find solutions to bring needle-free options to the market sooner rather than later. However, AAFA encourages support for the scientific process for drug development and urges participation in future clinical trials.

Report published in honor of National Eosinophil Awareness Week May 2023

Washington D.C., May 18, 2023 — A groundbreaking study report reveals challenges and barriers to timely diagnosis and effective treatment and management of a rare, but increasing allergic condition known as eosinophilic esophagitis (EoE). The results of the study portray the current state of EoE care in the United States and identify unmet needs for patients, family members, and health care providers.

Eosinophilic esophagitis (EoE) is a chronic inflammatory condition of the esophagus (the tube that connects the mouth to the stomach). It is characterized by excessive numbers of eosinophils, a type of white blood cell, that accumulate in the esophagus in response to a trigger (often food or pollen). EoE can cause difficulty swallowing, food impactions (where food gets stuck in the throat), nausea, vomiting, reflux, stomach and chest pain, malnutrition and weight loss.

The Asthma and Allergy Foundation of America (AAFA) and the American Partnership for Eosinophilic Disorders (APFED) conducted a multicomponent cross-sectional needs assessment study for EoE. The study aimed to understand the patient journey for EoE as well as health care providers’ awareness of and practice around EoE. The public summary of the study is now available in a report called Life with EoE: The Patient Experience and Opportunities to Improve Care in the U.S.

“EoE significantly impacts patients and their families physically, socially, mentally, and financially,” said Sanaz Eftekhari, co-author and vice president of research for AAFA. “People living with EoE may face many challenges throughout their disease journey. The process of diagnosis can be lengthy and frustrating. Clinical management of EoE often requires ongoing testing, clinic visits, and treatment evaluations and reevaluations. Understanding the EoE journey directly from patients and caregivers can help ensure that future diagnostic tools, clinical guidelines, treatments, and resources for EoE are aligned with patient needs.”

Key findings:

• Many patients experience delays in diagnosis for EoE, leading to delayed symptom relief, clinical care, and treatment.
• Signs and symptoms of EoE are not well-understood and mimic many other diseases, further delaying EoE diagnosis.
• Multidisciplinary care teams are common for EoE management.
• Adherence to treatment plans — particularly dietary therapies — poses the greatest challenge in managing EoE.
• EoE has a significant impact on social and emotional well-being.
• Patients/caregivers and health care providers acknowledge a greater need for support and resources for EoE.

“Eosinophilic esophagitis is a complex condition to manage, and this study and report help identify areas of improvement to ensure patients have the support they need to confidently manage their disease,” states Matthew Greenhawt, M.D., MBA, MSc of Children’s Hospital Colorado and member of AAFA’s Medical Scientific Council.

The Life with EoE report identifies opportunities to address the unmet needs and improve future care for people living with eosinophilic esophagitis in the United States. Insights from patients, caregivers, and health care providers describe the current state of EoE care in the United States—including challenges and barriers to timely diagnosis, quality medical care, effective treatments, and access to resources for EoE.

“This study sheds light onto the barriers to efficient and quality care for those living with EoE in the U.S.,” said Mary Jo Strobel, co-author and executive director for APFED. “Patients are eager for new treatment options and streamlined care. We anticipate this report will guide efforts of advocates, educators, policymakers, and members of the medical and research communities as we all work toward improved care and development of meaningful resources for those with EoE.”

The Life with EoE report is an independent research project of the Asthma and Allergy Foundation of America and the American Partnership for Eosinophilic Disorders and made possible by support from Sanofi and Regeneron.

AAFA highlights ways people with asthma and allergies can breathe easier in May and beyond

Washington, D. C., April 25, 2023 – The Asthma and Allergy Foundation of America (AAFA) is honoring Asthma and Allergy Awareness Month this May with 31 days of action designed to raise awareness and help improve the quality of life for people with asthma and allergies.

“Every May, we call attention to the over 100 million people in the U.S. with asthma or allergies – many have both – by encouraging action to save and improve lives,” said Melanie Carver, chief mission officer for AAFA. “This means continuing to push for improved access to health care, clean air, and safe food. Our 31 days of action are designed to bring awareness to these conditions and give people with asthma and allergies concrete steps to manage their disease.”

Highlights of AAFA’s 31 Days of Action include:

• May 1: The month begins with AIR QUALITY AWARENESS WEEK. Climate change is a threat to public health. Everyone is at risk, but some populations are at greater risk. Learn more in the Spotlight: Climate Change and Allergies from AAFA’s Allergy Capitals Report.
• May 2: WORLD ASTHMA DAY! This year’s global theme is “Asthma Care for All.” AAFA will be releasing a major announcement about its Health Equity Advancement and Leadership (HEAL) initiative. Stay tuned for more details.
• May 9: LOCAL ADVOCACY DAY: Asthma and allergies are greatly influenced by where someone lives. People who have affordable and accessible health care, clean air, and economic stability have a greater chance of managing and controlling their asthma. AAFA will issue an action alert to help advocates contact their local elected officials on this day  
• May 11: Sign up to take one of AAFA’s online classes. AAFA offers continuing education opportunities (CME/CEU) for health care providers, nurses, and respiratory therapists. 
• May 14: FOOD ALLERGY AWARENESS WEEK and NATIONAL EOSINOPHIL AWARENESS WEEK begin! Visit the Kids With Food Allergies website for fact sheets, images, and activities.
• May 18: Tune in for an Instagram Live at 8 p.m. ET with Kids With Food Allergies (@kidswithfoodallergies) and The Allergy Chef (@theallergychef) for cooking demos and to learn more about cooking free of food allergens on a budget.
• May 25: Join AAFA’s webinar: “Myths and Misconceptions of Asthma and Climate Change.”
• May 30: Join AAFA’s asthma and allergy support community and our food allergy community and opt-in to get involved in advocacy, research, or become a patient spokesperson.

For a full list of activities and actions advocates can take, visit our website.

For additional resources, download and share our fact sheets on asthma (PDF), allergy (PDF), and food allergy (PDF) or our shareable images throughout the month.

“With spring allergy season in full swing, the month of May is a time to raise awareness of asthma and allergies and focus on solutions for people with these conditions,” said Kenneth Mendez, president and CEO of AAFA. “It is highly likely that someone you know has some form of chronic allergic disease. With over one in three people in the U.S. suffering from allergic disease, it’s important for everyone to understand ways to address these conditions. AAFA is committed to calling attention to and providing help for the challenges faced by people in the U.S. with asthma and allergies.”

​The world’s oldest asthma and allergy nonprofit organization celebrates 70 years of research, education, advocacy, and community outreach.

WASHINGTON D.C., January 12, 2023 — In celebration of its 70^th anniversary in 2023, the Asthma and Allergy Foundation of America (AAFA) and its food allergy division Kids with Food Allergies (KFA) unveiled updated branding, including two new websites and new looks for their award-winning online support communities. The new websites improve accessibility and support to better serve people living with asthma and allergies.

“Asthma and allergies can have a significant impact on every aspect of life for both the patient and their caregivers,” said Melanie Carver, AAFA’s Chief Mission Officer. “Because of this, it is essential that people have support and evidence-based resources that complement their treatment plan. AAFA’s mission is to help people managing asthma and allergies live full, healthy lives. Updating our brand and our websites – where people access the services we offer – is a critical part of that mission.”

AAFA gathered feedback from patients, caregivers, health care providers, and other stakeholders to update its brands and websites, aafa.org and kidswithfoodallergies.org. Both websites offer:

• Updated designs with easier-to-read text (to promote health literacy)
• Streamlined menu navigation
• Improved search function
• Evidence-based information reviewed by AAFA’s Medical Scientific Council and other experts to help people manage asthma and allergies
• Free, online support communities to connect with other people who live with asthma and allergies – newly updated to improve user experience and accessibility
• Updates about AAFA and KFA projects, research, and advocacy efforts
• Resources for stakeholders, such as health care providers, community health organizations, and advocates, looking to improve health outcomes by addressing various social determinants of health

AAFA worked with The Design Channel to conduct needs assessments, update the organization’s brand to be inclusive and approachable, and launch the two redesigned websites. For the KFA project, artist Farida Zaman, who specializes in children’s books, designed fun and diverse illustrations of children of various ages and cultures to represent the many faces of children who have food allergies.

“For 70 years, AAFA has been the leading patient organization advocating for people with asthma and allergies. At a time in history when misinformation is on the rise, it is more important than ever for AAFA to be a reliable and trusted source of information and support for our community,” said Kenneth Mendez, AAFA CEO and president. “Our new websites reinforce our efforts to achieve our mission to save lives and reduce the burden of disease for people with asthma and allergies, as well as our vision to be recognized as the most trusted ally serving the asthma and allergy community.”

The two websites and new branding were made possible with financial support from Sanofi, Regeneron, and Genentech.

FOR IMMEDIATE RELEASE

The report evaluates child care policies in U.S. states and territories and includes an advocacy toolkit to promote Elijah’s Law to strengthen protections for young children.

WASHINGTON D.C., Feb. 25, 2022 — Today, the Asthma and Allergy Foundation of America (AAFA) and the Elijah-Alavi Foundation (EAF) released “Child Care Policies for Food Allergy: Elijah’s Law Report for the U.S. States and Territories.” The report compares state-level child care licensing regulations against nine core policy standards that protect children with food allergy in a child care setting.

“Our report identified major gaps in child care regulations for food allergy,” states Kenneth Mendez, AAFA’s CEO and president. “To improve protections, the report also includes a toolkit to help advocates and legislators introduce and enact Elijah’s Law in their states.”

Elijah’s Law is named in memory of Elijah Silvera. On Nov. 3, 2017, 3-year-old Elijah died after having a severe allergic reaction (anaphylaxis) at his child care facility. Though the facility had
documentation of Elijah’s life-threatening milk allergy, asthma, and other allergies, the staff fed Elijah a grilled cheese sandwich. The child care did not follow emergency protocols to treat
anaphylaxis.

Elijah’s parents, Dina and Thomas Silvera, worked with their state legislators in New York to draft Elijah’s Law following his tragic death. The legislation requires child care facilities take
concrete steps to manage food allergies for children in their care. Such steps include developing emergency protocols, strategies for discussing food allergies with children and plans for
preventing exposure to food allergy triggers.

Elijah’s Law passed in New York on Sep.12, 2019 and later in Illinois on Aug. 20, 2021. Similar bills have also been introduced in Pennsylvania, Virginia and California. Through the newly
released “Child Care Policies for Food Allergy” report and toolkit, AAFA and EAF hope to accelerate efforts to introduce and pass Elijah’s Law in other states and territories.

“Though we are proud of these successes so far, we know the work is not done,” says Thomas Silvera, Elijah’s father and co-founder of the Elijah-Alavi Foundation. “Across the country, too many children with food allergies still lack the necessary protections to grow and thrive in early child care.”

“A change is a challenge, and a challenge is needed for change,” says Dina Hawthorne-Silvera, Elijah’s mother and co-founder of the Elijah-Alavi Foundation. “An action today can be the
answer to the challenge needed for the change necessary to save a child’s life. We thank all of our partners for support and diligence in ensuring the safety of all children.”

“It shouldn’t take a tragedy to effect change,” says Melanie Carver, AAFA’s Chief Mission Officer. “Food allergy and anaphylaxis policies and education should be available in every state and territory so young kids with food allergies can safely attend child care and school.”

To see how states and territories measure up to the recommended standards for managing food allergies in child care settings, visit aafa.org/ElijahsLaw.