When you live with a chronic disease like food allergies and asthma, you need support – the support of family and friends, but also support from the outside world. Fifty-eight million people suffer from either asthma or food allergies. Every year, 3,600 people die from asthma. And, every 3 minutes someone is rushed to the hospital suffering from a severe food allergy reaction. They are both serious and life-threatening conditions.
There are so many issues that need our collective attention – including legislative ones that support and protect patients with food allergies, asthma and other atopic diseases. We expect and are entitled to equal access to healthcare, research funding and education among other things.
When given the opportunity to join the Allergy & Asthma Network and contribute to the effort to better the lives of all food allergy and asthma patients, I jumped. Over the course of one day, we visited fifty percent of all Senators and nearly 100 member of the House of Representatives. We heard from doctors and nurses, families who have struggled within the existing healthcare system and those who have lost loved ones prematurely, and we were inspired by others striving to make lasting change.
Among the issues that need our attention are:
- Access to quality, affordable healthcare
- Access to affordable prescription medication and treatment
- Continued and increased funding for federal health and research funding
- Accurate and up-to-date food labeling
These issues translated into support for the following pending legislation that pertain to food allergy:
H.R. 1243/S. 523: Climate Change Health Protection and Promotion Act of 2019
Directs HHS to develop a national strategic action plan to help health professionals prepare for and respond to the public health effects of climate change.
My take: Researchers are considering whether the way in which we produce and process our food has contributed to the rise in food allergies. The nutrients that nourish our good bacteria in our microbiome has changed over the last 100 years. Climate change has and will undoubtedly change the way we grow our food and the way in which our bodies respond to these changes.
H.R. 2117: Food Allergy Safety, Treatment, Education and Research (FASTER) Act
Requires that sesame be added to the current list of allergens that manufacturers are required to label for. The bill would also provide the CDC funding to conduct data on allergy prevalence.
My take: Sesame is the 9th most common allergen (and one of the fastest growing allergies in terms of prevalence) and it’s a particularly difficult one to avoid. Ground into flour and paste, used as oil in beauty products, in addition to whole seeds, current labeling guidelines allow for sesame to be hidden in ingredient lists under general terminology like “spices,” “natural flavors,” and “seasoning.” Customers want transparency in their food and beauty products. And, labeling for sesame would bring the US closer to the [more thorough and higher] standards set in the UK, EU, Canada and Australia.
For more information on sesame seed allergies, please see Sesame: The 9th Food Allergen?
H.R. 2468 School-Based Allergies and Asthma Management Program Act
Increases grant preference to states that implement school-based asthma and allergy management programs (including student action plans and emergency medication administration education/training for staff).
My take: Schools are concerned with how to handle the increasing number of students with food allergies. And they should be. Studies show that 30 percent of stock epinephrine use was for students and staff with no known history of allergies. But schools lack the funds to improve and increase training on the emergency medication [epinephrine] that will ensure administration when it’s so critically needed. Immediate administration of epinephrine is associated with more favorable outcomes during anaphylaxis. Familiarity with the signs and symptoms of a severe reaction leads to accurate, faster treatment, better protection for students and reduces school liability.
Not in D.C.? How you can advocate from where you are:
- Call your state’s representatives and encourage them to support these and other legislation that protects patients.
- Start local! There are towns, cities and counties across the country that are doing things right. For example, there are a few places where police and bus drivers are trained to carry and administer epinephrine. Is your town one of them?
- Work with your state senators and local representatives to allow stock epinephrine to be placed in public venues.
- In Connecticut, Representative Robin Comey is trying to pass legislation that does just that through Senate Bill 706. If you live in CT, contact your legislators and ask them to support 706 to give entities access to stock epinephrine and the ability to protect those experience life-threatening reactions.
- In New York City, Elijah’s law (NY S218A) proposes to mandate training and establish emergency procedures for early child care centers and preschools in New York City.
It is an honor and a privilege to help improve rights for patient and families like ours and to play a part in our government at work. By representing all our voices, it was clear we illustrated what is important to constituents and elevated these important issues for our representatives.
Find your own way to keep the momentum going!