Allergy & Asthma Day Capitol Hill 2024: Advocating for Health Equity

Health professionals continue to find new and innovative ways to treat allergic diseases. But it remains very important that no one is left behind in gaining access to these treatments and quality medical care.

Health equity is core to Allergy & Asthma Network’s values and mission. It was also the central theme – “Breaking Barriers: Advancing Health Equity for All” – of our 27th annual Allergy & Asthma Day Capitol Hill (AADCH) on May 8, 2024 in Washington, DC.

AADCH is Allergy & Asthma Network’s annual advocacy day. It continues the Network’s mission to ensure federal laws, policies and regulations help people living with asthma, allergies, and related diseases.

During AADCH, advocates met with members of Congress and their staff at 130+ U.S. House and Senate offices. They represented the patient voice at these meetings to ensure their needs are addressed in federal legislation.

Advocates urged members of Congress to sponsor or co-sponsor five key pieces of proposed new legislation. These five bills align with Allergy & Asthma Network’s key Policy Priorities:

• Improve access to safe, affordable medical care and innovative treatments.
• Maintain asthma and allergy funding for programs supported by federal agencies.
• Reduce health risks for asthma and severe allergy emergencies.
• Reduce environmental health hazards to support lung health.
• Improve health equity.

“Our policy priorities are focused on expanding access to medical care and treatments and making sure the environments they live and work in are safe for everyone,” says Lynda Mitchell, CEO of Allergy & Asthma Network. “It’s especially important for people living in under-resourced communities. They continue to face more barriers to care that impact their ability to get the healthcare they need and deserve.”

More than 125 advocates attended AADCH in person. They hailed from 29 states and the District of Columbia. Online, 914 people participated in an email advocacy campaign to support these same five bills. Online advocates sent 2,110 emails of support for these bills to their representatives in Congress.

The five key pieces of legislation in the 118th Congress that Allergy & Asthma Network is advocating for this year include:

• Safe Step Act (S. 652/H.R. 2630). Helps individuals access their medication on time and when they need it. The legislation would ensure that patients can seek an exception if their health insurer delays covering medically necessary treatment by requiring the patient to try and fail on a different medication first — called step therapy.
• HELP Copays Act (H.R. 830). Helps people better afford their medical treatments. It would ensure that copay assistance is counted towards a plan holder’s deductible and out-of-pocket maximum.
• Elijah E. Cummings Family Asthma Act (H.R. 5749). Expands the CDC’s National Asthma Control Program to all 50 states; directs the CDC to collaborate with state and local health departments on information and education to the public on asthma; requires the development of state plans around public health responses to asthma; and requires the collection and coordination of data on the impact of asthma.
• Dillon’s Law (H.R. 3910/S. 3575). Provides incentives for states to allow Good Samaritans to administer epinephrine to a person experiencing anaphylaxis (a severe allergic reaction), in the event they need the medication before emergency medical services can arrive.
• Epinephrine’s Pharma Inflated Price Ends Now (EPIPEN) Act (H.R. 6965). Caps out-of-pocket costs for a two-pack of epinephrine auto-injectors at $60 for patients with employer-based or individually purchased health insurance. 

Allergy & Asthma Network also continues to support federal funding for asthma and allergy programs at the following agencies:

• U.S. Centers for Disease Control and Prevention (CDC)
• National Institutes of Health
• U.S. Environmental Protection Agency (EPA)
• Health Resources Services Administration (HRSA)
• Centers for Medicare and Medicaid Services (CMS)
• U.S. Department for Housing and Urban Development (HUD)
• U.S. Department of Defense

Federal health programs improve healthcare quality and safety for people. These programs support disease awareness, management, and research.

At mid-day on AADCH, the Network hosted its annual Congressional Lunch Briefing at the Rayburn House Office Building. U.S. Rep. Debbie Dingell (MI) joined in person and U.S. Rep. David Valadao (CA) offered remarks via recorded video. They both emphasized the importance of access to affordable asthma medications. In addition, representatives from professional medical societies and government agencies were among speakers at the briefing. Watch the Congressional Lunch Briefing now!

Visit Allergy & Asthma Network’s advocacy site  – to find out how you can “Take Action ” to support asthma and allergy legislation. In just a couple clicks, you can send letters and emails to members of Congress.

Here’s a recap of AADCH breakfast briefing and Congressional Lunch Briefing on May 8. Each of the speakers addressed the Allergy & Asthma Network’s Policy Priorities.

Voice of the Patient Advocates: Zacky Munoz and Priscilla Hernandez; Caden and Nicole Rosengarten

AADCH 2024 began with a breakfast briefing, where advocates heard from 12-year-old Zacky Muñoz. He kicked off the day with his brand of youthful energy, sharing his story of living with food allergies in Pasadena, California.

Zacky was born with severe food allergies. He had his first anaphylactic reaction at school when he was 6 years old. His “safe food” had been switched out for his allergen in the school cafeteria. Zacky was administered epinephrine and taken to the hospital for treatment. After a similar incident a month later, the Muñoz family sought to ensure a safer environment in California schools for children with food allergy.

At the AADCH briefing, Zacky discussed how he and his mother Priscilla advocated for what became known as the Zacky Bill. The legislation was signed into law by Gov. Gavin Newsom in 2022. It helps schools and families navigate food allergies through a virtual Resource Guide.

Zacky also helped initiate the Muñoz Student Allergy Framework for Emergencies (SAFE) Act. Gov. Newsom signed the SAFE Act into law in 2023. It helps ensure access and clear communication of epinephrine in schools and expands epinephrine training.

At the mid-day Congressional Lunch Briefing, 13-year-old Caden Rosengarten of Spring Creek, Nevada talked about growing up with multiple food allergies. He had severe eczema as an infant and suffered from severe vomiting episodes before his food allergy diagnosis. He was later diagnosed with asthma and eosinophilic esophagitis, or EoE.

“It is a lot harder to handle everyday life because you are different from everybody else,” Caden says. He has sometimes felt excluded at school because of his asthma and allergies. “The school can’t make a lunch that I can eat, which is difficult because that adds extra costs to our family,” he said.

But Caden has found a way to find positives in his health.

“I see the world with a different perspective than others do,” he said. “I have more empathy for those who do have struggles. And I really want to help others, so I’m planning to become an allergist in the future to help find a cure.”

That last remark was greeted with a round of applause at the briefing.

Caden’s mom Nicole, who is a school nurse at Caden’s school, talked about how biologics medications have helped her family. The high cost of these medications hinder access. She cited the Safe Step Act as legislation that she hopes the Congress passes to help her and children get the medication they are prescribed.

“Thank you from the bottom of my heart for being here and fighting this fight with me,” Nicole said.

U.S. Rep. Debbie Dingell, Congressional Asthma & Allergy Caucus Co-Chair

Rep. Debbie Dingell of Michigan attended the AADCH lunch briefing in person. She discussed the importance of affordable asthma medications and encouraged advocates by saying their visits to Congressional offices put “a human face” to the issue.

“People don’t understand the issue, they don’t understand the choices that a family has to make, they don’t understand the cost,” Rep. Dingell said. “We need people to understand how desperately people need the preventive and emergency inhalers, and how much they cost. A deductible of $200 is a mother having to decide whether to put food on the table or get the asthma medication to keep her child safe.”

Dingell, who has asthma, said disparities in care keep people who need asthma medication the most from getting it. She called it her “goal” to have a federal cap of $35 on asthma inhalers. It would be similar to legislation for insulin for people with diabetes.

Dingell also said she was supporting:

• Request for CDC funding for the National Asthma Control Program to help states better monitor asthma.
• Elijah E. Cummings Family Asthma Act
• Updates to food allergy labeling requirements to protect against accidental exposures.

“Be the face,” she encouraged advocates “Get out there. Tell your legislators they have to do something. And I’ll make them listen, because we’ve got to get this done.”

Dingell was instrumental in re-introducing the Elijah E. Cummings Family Asthma Act into the 118th Congress last year. She was joined by brought to the House floor by U.S. Reps. Valadao, Brian Fitzpatrick (PA) and Lisa Blunt Rochester (DE).

U.S. Rep. David Valadao, Congressional Asthma & Allergy Caucus Co-Chair

Rep. David Valadao of California took part in the AADCH lunch briefing with a video recording. He serves as co-chair of the Congressional Asthma & Allergy Caucus.

Valadao encouraged AADCH advocates to “play a critical role” in asthma and allergy advocacy.

“Thank you all for being in Washington this week,” he said. “You are advocating on behalf of the millions of Americans living with allergies and asthma. Over half a million people live with asthma just in California, with millions more living with seasonal and yearly allergies. These conditions have a serious impact on people’s lives and can make simple daily activities incredibly difficult.

“As co-chair of the Congressional Asthma & Allergy Caucus, I am committed to working with my colleagues in Congress to support legislation that expands access to care and increases funding for research.

“You play a critical role toward our shared goal of improving quality of life for people with asthma. I look forward to working with you to ensure that families across the country have access to quality care they need to live happy, healthy lives. Thank you for all you do.”

‘State of Asthma and Allergy Care In the United States’: Remarks from ACAAI President Gailen Marshall, MD, and Travis Miller, MD, Chairman of Advocacy, ACAAI

The American College of Allergy, Asthma & Immunology (ACAAI) was active during AADCH. A group of allergists joined together as a “Strike Force” to meet with legislators on Capitol Hill. Later they joined with AADCH advocates to speak with more members of Congress and their staff.

During a breakfast briefing on May 8, Gailen Marshall, MD, outlined some of ACAAI’s 2024 Advocacy Priorities:

• Reduce the burden of Prior Authorization, which deprives patients of their treatments for days or weeks.
• Work with Senate committee to lower the cost of asthma inhalers and address barriers to obtaining asthma medications.
• Support continued coverage of telehealth visits.

At the Congressional Lunch Briefing, Travis Miller, MD, discussed some recent innovations in asthma care. These include recognizing asthma as a spectrum of disease and spotlighting treatments such as biologics and immunotherapy.

Dr. Miller also highlighted ACAAI’s activities to improve health equity. They recently hosted a roundtable to identify common barriers. These include access and cost healthcare, public policy, and infrastructure of healthcare.

“Solutions come from patient education, research, recruitment and retainment of doctors and researchers from racially and ethnically diverse backgrounds, and dissemination of information that is culturally appropriate and materials to the patients that we are serving. This is an important document to be able to serve all patients,” Dr. Miller said.

ACAAI also submitted letters to FDA and CDC regarding label changes for food allergy extracts. “We think that’s particularly important for the safety of our patients,” Dr. Miller said.

Promoting Health Equity: Remarks from James Kiley, PhD, of National Heart, Lung and Blood Institute (NHLBI)

Health equity is a topic that has been around for a while, said James Kiley, PhD, Director of the Division of Lung Disease at NHLBI. “We are shining a very bright light on this in a way that I think you are starting to see action.”

Kiley presented data on asthma prevalence and mortality among racial and ethnic groups. The data showed that Black, Hispanic/Latino and Native Americans are more likely to have asthma. Black Americans have “far higher death rates” due to asthma than other groups, he added.

“And I say to everyone, when I stand up to speak, not a single person should ever die of asthma,” Kiley said. “Never. And I think this is something that needs specific attention.”

Kiley highlighted some new strategies aimed at helping patients and families with asthma.

School-based asthma care. School absenteeism among children with asthma is high. “You can’t reach the children if they are not in school,” Kiley said. One new approach focuses on families becoming more involved. Parents would provide the school with medications and a care plan.

Emergency department visits. Instead of doctor appointments, some go to the hospital or ER for what may be routine asthma care. A new approach would encourage the use of telehealth in the home to reinforce patient education that are done in the ER. “We are bringing asthma care to people where they live and learn,” Kiley said.

Community-based asthma care. Asthma home visits by community health workers are often used in low-income areas. This new approach would provide patients with access to a portal. They can access information on how to care for their asthma and connect with a patient navigator. “You can get much better quality of life and asthma control with a community navigator than if you just do it alone,” Kiley said.

Indoor Environment Determinants of Health: Remarks from Jonathan Edwards, Director, Office of Radiation and Indoor Air, EPA

Jonathan Edwards, Director of the Office of Air and Radiation with EPA, addressed five key categories of social determinants of health. These can affect a person’s health risks, health outcomes and quality of life.

• Individual behaviors
• Social circumstances
• Genetics and biology
• Medical care
• Physical environments

Edwards explained that EPA has developed Indoor Environment Determinants of Health. These include modifiable environmental risks such as presence of household air pollution, pests, mold, moisture, biologic contaminants, chemicals, and irritants.

These factors can determine “chronic disease outcomes,” Edwards said. “Indoor environments are very important determinants of health because we spend so much of our time indoors. We consistently see more and worse respiratory and cardiovascular disease in low-income neighborhoods and substandard housing.”

EPA brings together federal partners in health, housing, energy and weatherization to address Indoor Environment Determinants of Health. They work together through the Federal Asthma Disparities Subcommittee to provide services to address indoor environments, expand asthma home visits and provide reimbursements.

Annual EPA Award: Maine Asthma Prevention and Control Program

Allergy & Asthma Network joined with EPA in recognizing the Maine Asthma Prevention and Control Program (MAPC) with the 2024 National Environmental Leadership Award in Asthma Management. The award is part of EPA’s effort to increase public awareness of asthma and partner with organizations to reduce the risk from asthma in communities nationwide.

Maine’s program provides leadership and coordination for asthma care delivery statewide. One of MAPC’s initiatives is the In-Home Asthma Education Program, an innovative, home-based asthma program for adults, children, and caregivers who, despite adequate medical management, have asthma that is not well controlled.

The program connects those most in need with environmental asthma remediation tools and community resources through health educators who are highly attuned to the disparities that exist in asthma management.

Above: Allergy & Asthma Network advocates canvassed Capitol Hill on May 8, meeting with members of Congress and their staff and urging them to put patients first in asthma and allergy legislation.

Thank you to our AADCH Sponsors

Allergy & Asthma Day Capitol Hill would not be possible without the support of our sponsors: