Patient-centered healthcare means putting patients first. It means giving them the tools they need to access their treatment and manage their condition. This was the theme at the 26th annual Allergy & Asthma Day Capitol Hill (AADCH) on May 3, 2023 in Washington, DC.
The advocacy event continues the Network’s mission to ensure federal laws, policies and regulations support people living with asthma, allergies and related diseases. More than 100 advocates attended AADCH in person in Washington, DC. They hailed from 19 states and the District of Columbia. They met with members of Congress and their staff at 90+ U.S. House and Senate offices.
Online, more than 1,500 people participated in an email advocacy campaign. Altogether, they sent 3,500 emails to their representatives in Congress using the Network’s one-click advocacy platform. Both are record-setting numbers for AADCH virtual advocacy!
The Network also hosted its annual Congressional Lunch Briefing as part of AADCH. The hour-long briefing included Rep. Debbie Dingell as well as representatives from government agencies and professional medical societies. Watch the Congressional Lunch Briefing now!
“Policy and advocacy work is an important way we have advanced our mission since 1985,” Allergy & Asthma Network interim President Lynda Mitchell said. “We are here to collectively show a strong base of support for these issues that can benefit from federal legislation, save lives and improve the health and quality of life for people living with asthma and allergies.”
Allergy & Asthma Network’s 2023 Policy Priorities are:
- 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.
At AADCH, the Network focused on four key pieces of legislation in the 118th Congress:
- Safe Step Act (S. 652/H.R. 2630): ensures that patients can seek an exception if their health insurer delays medication coverage by requiring the patient to try and fail a different medication first. This is called step therapy.
- HELP Copays Act (H.R. 830): helps ensure that copay assistance is counted towards a deductible and out-of-pocket maximum.
- Protecting Children with Food Allergies Act (S. 121): requires school food staff to complete food allergy training. This would help the staff to prevent and respond to food allergy emergencies.
- One School One Nurse Act (H.R. 305): address ongoing shortage of school nurses by making grants available for recruiting, hiring and retaining school nurses in public schools.
Allergy & Asthma Network also continues to support federal funding for asthma programs at the U.S. Centers for Disease Control and Prevention (CDC), National Institutes of Health, the U.S. Environmental Protection Agency (EPA) and others. Federal health programs improve healthcare quality and safety for people. These programs support disease awareness, management and research.
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 and state representatives.
Here’s a complete recap of AADCH and the Congressional Lunch Briefing on May 3. Each of the speakers at the Briefing addressed the Network’s Policy Priorities and key pieces of legislation.
Congressional Asthma & Allergy Caucus: Congresswoman Debbie Dingell
Rep. Debbie Dingell of Michigan took part in the AADCH lunch briefing with a video recording. She serves as co-chair of the Congressional Asthma & Allergy Caucus.
Dingell said she plans to re-introduce the Elijah E. Cummings Family Asthma Act in the 118th Congress. The legislation “would strengthen the nation’s public health response to asthma and update food labeling requirements for those with severe allergies from accidental exposures,” she said.
A prior version of the Elijah E. Cummings Act expanded the U.S. Centers for Disease Control (CDC) National Asthma Control Program to all 50 states. It also required states to develop a public health response to asthma, especially for underserved communities.
Dingell continues to work on the nation’s COVID-19 response. She also wants to make sure asthma medications are more affordable.
“I have asthma,” she said. “The inhaler I have to use is unaffordable for too many families. It was critical that we lowered the cost of insulin for diabetics. But there are families that need [reduced costs] for asthma medicine.
“I won’t forget the town hall meeting where a mother stood up. She told me her family lived below the poverty line and that her child’s inhaler was $800 a month. I will be working to strengthen access to quality, affordable healthcare for every American.”
Dingell praised AADCH advocates for sharing their stories with members of Congress and putting a “human face” to asthma. “As we chart a course ahead, your partnership is essential,” she said. “You are truly making a difference for the millions of Americans with asthma and allergies.”
Research Studies and the Future of Asthma Care: Remarks from James Kiley, PhD, of National Heart, Lung and Blood Institute (NHLBI)
James Kiley, PhD, Director of the Division of Lung Disease at NHLBI, joined AADCH to discuss how National Heart, Lung & Blood Institute (NHLBI) funding benefits asthma patients and families.
Kiley highlighted poor asthma control as a significant issue. He cited CDC statistics that showed 44% of children living with uncontrolled asthma. “This is an astonishing fact. And affordable medicine is key, especially for those in lower socioeconomic categories because we know asthma has a disproportionate impact on those populations,” he said.
Kiley reviewed ongoing genetics research at NHLBI and how certain genes can impact asthma severity. He also discussed an ongoing study that focused on school-based health interventions in Denver, Colorado. The goal of the study is to examine social determinants of health and the impact on asthma outcomes. “So we’re looking at the environment, not just biology. And that allows us to better understand how asthma is controlled,” he said.
Kiley explored how the COVID-19 pandemic has changed the healthcare landscape. Telehealth has exploded in recent years, of course. But many research studies are now also conducted in the home or virtually, and not in a clinic. “That means the entire infrastructure on how we do research has changed,” Kiley said.
Moving forward, NHLBI is focused on how climate impacts health, including asthma, allergies and other respiratory diseases. Kiley encouraged the research community to partner with NHLBI on climate studies. “This is an area you’re going to see more of, and it’s going to grow,” he said.
Improving Outdoor and Indoor Environments for People with Asthma: 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 how the federal agency works to reduce environmental asthma triggers. The Ambient Air Regulatory Program seeks to limit harmful pollutants like particulate matter and ozone.
“Asthma is a sobering example of how environmental quality and the disproportionate burden of diseases that low-income communities and people of color often face,” he said. “It’s evident in asthma prevalence, severity, health outcomes, costs of care – all of which are affected by the environment in which we live, work and play.”
Indoor air quality is equally as important as outdoor air – perhaps more so since many people tend to spend more time indoors. Indoor environmental hazards are important causes and triggers of asthma. These include mold, secondhand smoke, pests such as dust mites and cockroaches, and irritants from outside that are brought inside.
Allergy & Asthma Network joined with EPA in recognizing the Wisconsin Department of Health Services Asthma Program (Region 5) with the 2023 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 that reduce the risk from asthma in communities nationwide. No
The Wisconsin Department of Health Services Asthma Program serves 6 million state residents. Its activities focused on disproportionately affected groups including children, people with low income and racial and ethnic minorities. The program created the Wisconsin Asthma Coalition to develop the state’s asthma plan and deliver high quality asthma care through community ties, healthcare and environmental interventions. Its home-visiting program produced a 45% reduction in asthma-related emergency department visits and 88% reduction in asthma hospitalizations.
‘State of Asthma and Allergy Care In the United States’: Remarks from ACAAI President Kathleen May and Associate Director of Advocacy and Government Affairs J. Allen Meadows
The American College of Allergy, Asthma & Immunology (ACAAI) is active in advocacy each year at AADCH. A group of allergists joined us in our advocacy meeting on Capitol Hill. We heard from Kathleen May, MD, ACAAI President, and J. Allen Meadows, MD, Associate Director of Advocacy and Government Affairs at ACAAI.
During a breakfast briefing, Dr. May said ACAAI’s media outreach is focused on the impact of the changing climate and how it affects people with allergic conditions. She also pointed toward continued coverage of telehealth visits and reducing the burden of prior authorization as among ACAAI’s key advocacy issues.
At the Congressional Lunch Briefing, Dr. Meadows outlined concerns about food companies and sesame allergy. When the FASTER Act went into effect on Jan. 1, 2023, it added sesame as one of the top 9 allergens that must be identified on food labels. Instead of differentiating sesame on food labels and ensuring there’s no risk of cross contact at food processing plants, the companies opted to add and label sesame to products that were previously free of it.
“They unnecessarily put sesame in things that don’t need to have sesame so they can get around the labeling,” Dr. Meadows said. “That creates a big burden for food allergy patients who used to rely on these widely available products when they did not contain sesame.”
ACAAI has asked Congress to include bill language requiring FDA to clarify labeling requirements around sesame. ACAAI has also recommended a precautionary allergen labeling policy that is “mandatory, consistent, evidence-based and in the interest of consumers.”
‘Representation Matters’: Remarks from Nancy Joseph, DO, Allergy, Asthma and Immunology Section Chair, National Medical Association
The National Medication Association (NMA) represents 50,000 African-American physicians in the United States. Their presence in the field of asthma, allergies and immunology is lacking. Just 5% of allergists are African-American, says Nancy Joseph, NMA Allergy, Asthma and Immunology Section Chair.
Black representation in healthcare is critical to reducing asthma disparities. Joseph shared research that indicated when Black physicians are present in a community, Black patients’ healthcare improves.
“Even if there’s one Black physician in any county in America, the mortality of the Black population decreases, adherence to their treatment plan increases, and there’s more of a focus on preventive care,” Joseph says. “The point is: representation matters.”
NMA and Allergy & Asthma Network are committed to not only raising awareness of health equity but also finding solutions. The Network has launched free asthma coaching to patients – especially those in under-represented communities – for patients who take part in the Not One More Life Trusted Messengers project. Patients learn how to manage asthma symptoms and review inhaler technique and medications.
“Asthma disproportionately affects African-Americans,” Joseph said. “By raising awareness of asthma disparities, we give it a voice.”
‘Why We Advocate’: Patient Testimonial from Shemica Ward
Shemica Ward experienced every mom’s worst nightmare when her 2-year-old son Carter Jacob passed away on Dec. 27, 2008, due to an asthma attack. He was diagnosed with asthma one year earlier as a 1-year-old.
Ward, who serves as an Army nurse stationed at Fort Cavazos near Killeen, Texas, is still heartbroken.
“For a mom and a nurse, there is nothing worse than seeing your child have trouble breathing,” Ward told AADCH advocates at the Congressional Lunch Briefing. “It’s a horrible feeling to see a team of doctors working on your son and not being able to help. They worked on him so long, about 30-40 minutes, and as a healthcare professional you know that’s not normal. But they tried everything.”
Ward encouraged advocates to share their stories with legislators and policymakers.
“We definitely need more education and access to healthcare,” she said. “Medications need to be available for everyone. It should not be based on how much money you make. You should not have to scramble for medications.”
“Shemica’s story reminds us why we’re here advocating on Capitol Hill. We want to bring awareness to this chronic disease and find solutions to prevent needless death and suffering for those of us who battle this disease every day,” added Charmayne Anderson, Director of Advocacy at Allergy & Asthma Network.
Thank you to our AADCH Sponsors
Allergy & Asthma Day Capitol Hill would not be possible without the support of our sponsors: