Advocacy and Public Policy
Why does Allergy & Asthma Network Advocate for Patients?
Advocating for patients has been a core part of our mission since Allergy & Asthma Network was founded over 35 years ago. With millions of Americans living with allergies, asthma and related conditions, we seek to ensure that federal and state laws, policies, regulations and resources support our role in achieving optimal health outcomes for people living with these chronic conditions.
The patient’s voice is also an important aspect of our advocacy work. Our patient advocates play a crucial role in raising awareness, educating policymakers and the general public, removing barriers to care and making issues widely known to make medical care and treatment more accessible and effective.
How is Allergy & Asthma Network involved in advocacy?
We foster relationships within federal and state governments to educate on policies that impact patients with allergy, asthma and related conditions, and shape policies that support the health and well-being of patients. Our advocacy work includes meetings on Capitol Hill and in state capitals, communications via letter writing/emails/phone calls, social media outreach, delivery of comprehensive information to key decision-makers, and collaborations with other stakeholder groups.
We also engage our members and volunteers across the country to connect with their federal and state representatives to bring a personal voice and connection to the issues. You have a vital role as a constituent in the development and implementation of public policy.
How are Patients and Healthcare Providers Involved in Advocacy?
Together with patients, families, healthcare professionals and other stakeholders, we amplify the patient voice, build capacity and make connections at all levels of government and in communities nation-wide. The voice of the patient and those working in healthcare is important to share personal testimonies and expertise to impact policy. We support our advocates who make phone calls, write letters, send emails and participate in in-person meetings with legislators. Grassroot campaigns are also utilized to mobilize our community to contact their legislators about a specific issue from time to time.
One key event to further our mission is Allergy & Asthma Day Capitol Hill (AADCH). This annual event in the month of May brings together hundreds of patients and families along with healthcare professionals, industry partners and stakeholder groups to raise awareness of asthma and allergy issues to members of Congress. The day provides our attendees an opportunity to discuss key allergy and asthma policy priorities and share personal stories to help make the case to policymakers.
What is Allergy & Asthma Network’s Policy Agenda?
Our policy agenda guides our efforts and keeps us driving toward our ultimate goal of ending needless death and suffering due to asthma, allergies and related conditions. Key issues include:
Access to safe, effective and affordable medications and treatment options
Access to safe, effective and affordable medicines is critical as the rising costs of prescription drug prices puts Americans at risk for poorer health outcomes, especially those with chronic and life-threatening conditions such as asthma and severe allergies. Lack of access to affordable medicines has led to patients not filling a doctor’s prescription, reducing the dosage to make a supply last longer, buying medicines from foreign countries or substituting alternative therapies. Continuity of treatments is necessary for patients with chronic conditions and access to medications is critical.
One important access issue is step therapy. Step therapy is a practice health insurance plans use to manage the cost of medications. A clear and transparent process is needed to seek exceptions and approvals for medications subject to step therapy, and a reasonable and clear timeframe for overriding decisions should be established.
Access to affordable and high-quality healthcare and insurance coverage
Access to high-quality, affordable healthcare and insurance coverage is essential to achieve the most successful health outcome for patients. This includes adequate coverage for patients who rely on government programs including Medicare and Medicaid.
Rising costs for healthcare services and health insurance premiums represent a growing burden for families. Out-of-pocket costs, including insurance premiums, copays and deductibles, have increased to the point that costs have largely become unaffordable for many. This can result in patients cutting back on prescription medications and postponing follow-up care. For people with chronic conditions such as asthma, staying on a medication schedule is essential. Ultimately, when patients forgo necessary medical care it creates a community that is in poor health, leading to increases in healthcare spending.
To meet the growing needs of the patient population, the value of the medical workforce (e.g., doctors, nurses and other caregivers) to the healthcare system must also be considered. An educated and skilled workforce and the growing shortage of health workers must be addressed, especially in rural and medically underserved areas.
Funding for allergy and asthma health and research programs
Federal health and research programs are essential to improve the healthcare quality and safety for all Americans, particularly those who live with chronic conditions.
Programs that support disease awareness, management and safety under the U.S. Departments of Health and Human Services, Housing and Urban Development, Defense and the Environmental Protection Agency are essential in the development of best practices in care, monitoring healthcare quality, providing information to the healthcare workforce and convening stakeholders.
Research contributes to understanding of health conditions and funding support programs that lead to treatments and tools that improve disease management and outcomes, thereby improving the quality of life for patients. The research community includes academic health centers, National Institutes of Health and other government funders, not-for-profit foundations, pharmaceutical companies and managed care organizations. Discoveries and insights produced by research help enhance understanding of medications and health disparities and directly impacts patients’ lives.
Access to innovative therapies and technologies to advance medical treatment
The discovery, development and commercialization of innovative therapies and technologies (e.g., biologic medications, immunotherapy, telehealth, remote patient monitoring) are important to address unmet medical needs and improve patients’ lives.
Many patients who suffer from chronic respiratory conditions like severe asthma and COPD would benefit from greater and more convenient access to a physician.
Telehealth is the use of digital information and communication technologies, such as computers and mobile devices, to manage your health care and access services remotely. It functions as a complement to existing healthcare resources by increasing access to affordable medical treatment. The delivery system uses technology that is pervasive in modern daily life, and it can provide a valuable – and cost-effective – way for people to get necessary treatment.
Telemedicine complements existing healthcare resources by increasing access to affordable medical care. This technology would be an effective way to provide disease education and improved disease management, particularly in rural areas, where visiting a doctor’s office can require lengthy travel.
Biologics and targeted therapies
Severe asthma is increasingly a priority for doctors, medical researchers, pharmaceutical companies and patients. The prevalence of severe asthma is estimated to be 5-10 percent of all asthma patients. Biologics are medications designed to treat the source of symptoms, rather than the symptoms themselves, by targeting the cells and pathways that lead to allergic inflammation and breathing problems for people with asthma.
Food Allergy Immunotherapy
Allergies are potentially a life-threatening health condition that can adversely affect a patient’s health and well-being. Food allergies are increasing among Americans and developments in immunotherapy are helping to decrease symptoms and provide patients with long-lasting relief.
Mitigate environmental health hazards
Patients who suffer from asthma and other respiratory illnesses are vulnerable to environmental contaminants from air pollution, and the adverse health effects of climate change. Air pollution and climate change solutions must integrate public health impacts to protect most vulnerable populations.
Clean air is an important health concern for all of us. But when you have asthma, air quality indoors and out makes a huge difference to how well you breathe. We support the dialogue on climate change and health and are committed to opposing any attempts to block, weaken or delay protections against ozone, carbon and particle pollution.
Ground-level ozone and particulate matter (e.g., dust, dirt, soot, or smoke) and living and/or working within proximity to major sources of harmful air pollution (e.g., major roadways, solid waste landfills) can trigger asthma symptoms. Indoor pollutants and environmental hazards can also trigger asthma symptoms, such as mold, dust mites, cockroaches and mice, cigarette smoke, and living in substandard housing.
The increase of carbon pollution and other greenhouse gases are impacting the climate resulting in rising temperatures and a more expansive growing season, which has caused changes in flowering time and pollen development. The higher concentrations of pollen emitted into the air increases exposure to allergens that trigger asthma flares and exacerbate allergy symptoms. The increase in greenhouse gases is leading to a rise in wildfire severity, droughts, heavy rain events and floods, all putting respiratory health at risk.
End health disparities and move toward greater health equity
Development of health equity interventions are needed to support better health outcomes for all patients. Health disparities (e.g., access to care, poverty, environmental hazards, education inequities, language and cultural differences) cross ethnic and socioeconomic groups and impact individual health and well-being.
Asthma and allergy rates are higher in poor urban areas and more common in African-American and Hispanic children, according to the Centers for Disease Control and Prevention (CDC) National Center for Health Statistics. Proven intervention strategies (e.g., programs, services and policies) are needed to develop successful health equity interventions.
Health disparities occur as the result of a patient’s increased exposure to indoor and outdoor environmental allergens and irritants that trigger asthma symptoms. Living in substandard housing conditions such as pest infestation, lead paint, faulty plumbing and mold, and overcrowding can lead to health problems such as asthma. And living near major sources of harmful air pollution (e.g., major roadways, landfills) can trigger asthma symptoms.
Poverty can affect access to preventive medications and healthcare. Limited or lack of transportation results in patients rescheduling or missing their medical appointments, delaying their care, and forgoing or delaying medication use. As a result, those patients do not manage their medical conditions properly, leading to poorer health outcomes. Language and cultural differences can be a barrier and education inequities can lead to a lack of basic knowledge and understanding of the disease, impacting patient adherence to treatment plans and use of prescribed medications.
Modernize food labels
We advocate for improved food labeling to make foods safer for people with food allergies. Improved food labeling includes better ways to identify allergens and potential issues of traces of allergens in foods due to cross-contact.
Add Sesame to Food Ingredient Labels
More than 15 million Americans are living with food allergies, including 6.1% of children. Sesame allergy has increased over the years in part due to the growing number of products containing sesame seeds and sesame oil – foods, cosmetics, lotions and pharmaceutical items.
The Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA) became effective in 2006 and governs how the eight major food allergens – milk, egg, peanut, tree nuts, soy, wheat, fish and crustacean shellfish – are represented on packaged foods in the United States. Sesame is not recognized as a major food allergen in the United States, unlike Canada, the European Union, Israel, Australia, New Zealand and many others.
In 2016, a report by the National Academy of Sciences recommended that sesame be listed as a major food allergen and identified on food labels.
While allergen avoidance is the key to managing a food allergy, successful avoidance requires individuals to have accurate information on the ingredients and possible allergenic contaminants in food labeling.
While FALCPA makes it easier for people with food allergies to avoid packaged products that contain food allergens, manufacturers are not required to list major allergens that may be present due to unintentional “cross-contact” during processing. Cross contact happens when a small amount of a food allergen gets into another food accidentally, or when it is present in saliva, on a surface or on an object. This small amount of an allergen could cause an allergic reaction.
Individuals affected by food allergies need to be able to identify potential allergens and not solely rely on contacting the manufacturer to determine whether a food is safe.
Epinephrine in schools and public places and stock albuterol
We believe access to emergency medication to treat asthma attacks and anaphylaxis will save lives, and have advocated for access to stock emergency medications in schools and public places for many years.
Our Breathe: It’s the Law awareness campaign was initiated to make sure students in EVERY state can carry and self-administer their life-saving asthma and anaphylaxis medications. We played a leadership role in spearheading this campaign with support from volunteers and legislators in every state to get these laws passed in all 50 states.
School Stock Albuterol and Asthma Management
A number of states across the country have passed laws or guidelines that permit schools to stock albuterol with a prescription and administer it to a student believed to be in respiratory distress and standardize asthma action plans.
School Stock Epinephrine Laws
State laws that allow or require anaphylaxis emergency preparedness plans that permit schools to stock emergency supplies of epinephrine auto-injectors.
Entity/Public Space Stock Epinephrine
Stock epinephrine has now moved beyond the school walls and out to public venues – from theme parks, restaurants and sports arenas to daycare centers and more. Is your state prepared to respond to a life-threatening allergic reaction in a public place? Many states passed entity epinephrine laws that permit public venues to stock emergency supplies of epinephrine auto-injectors.
Over the years, a number of laws have been passed to protect the rights of those with allergies and asthma and improve their quality of life. This is a brief summary of the key legislation impacting adults and children with asthma and allergies.
Our annual advocacy day brings together members of Congress with patients, advocates, healthcare professionals, industry leaders and medical researchers to discuss critical legislative and regulatory issues facing patients living with asthma, allergies and related conditions.
Find out how you can make a difference as a patient advocate. When we work together, we form a strong, collective voice to inform and influence public policy. There are opportunities on many levels. No legislative experience is needed – we provide the training and tools you need to effectively ensure your voice is heard.
Advocacy News & Articles
The Network invites you to its annual Allergy & Asthma Day on Capitol Hill (AADCH20).
News regarding the Allergy & Asthma Network’s successful advocacy efforts leading to increases in federal program funding and policy provisions.
The Network continues to advocate for airlines to stock epinephrine auto-injectors in emergency medical kits for the treatment of anaphylaxis.
“More Than Skin Deep” initiative seeks to collect and share patient experiences to inform the drug development process and lead to better treatments.
The Network joins other patient organizations to urge ICER to consider patient needs when determining the value of emerging treatments for peanut allergy.