Greetings! There is an African Proverb that says, “If you want to go fast, go alone, if you want to go far, go together”. The coronavirus crisis has impacted every one of us. Now is the time for unifying rather than divisive action. In this issue we highlight four examples of positive action. We report how the Food and Drug Administration clarified their food allergen guidelines and developed a FAQs page providing additional information. Next, read about why and how Thomas and Dima Silvera founded the Elijah-Alavi Foundation. Other news items include how the race for a COVID-19 vaccine has impacted drug pricing reform and a new study showing how there might be a pill preventing attacks of life-threatening anaphylaxis. Thanks very much for your support and encouragement. Best wishes!
The parents of three-year-old Elijah-Alavi were devasted by the loss of their son. While at preschool, Elijah, who had food allergies including dairy, was mistakenly given a grilled cheese sandwich. He suffered a fatal attack of anaphylaxis. From that tragedy Elijah’s parents embarked on a path of advocacy and education, so that other parents wouldn’t have to experience the same heartbreak. They founded the Elijah-Alavi Foundation, which includes “Elijah's Echo,” an initiative raising awareness of food allergies and anaphylaxis. The Allergy Advocacy Association worked closely with his parents on the successful passage of Elijah's Law in September 2019. This law provides the framework to establish guidelines for daycare providers for the prevention of and response to anaphylaxis.
Silvera Family Raises Awareness of Food Allergies in Childcare Facilities
By Kristen Stewart
June 8th, 2020
It's just one little word, only three letters long, but it still has the power to break the heart of Thomas Silvera every time he uses it in reference to his son Elijah-Alavi who passed away at the age of three after an anaphylactic reaction.
Because of the coronavirus, the Food and Drug Administration has recently issued interim food labeling guidelines, in response to possible supply chain issues and shortages. These guidelines created confusion as to “what’s in, what’s out and what’s new” in food products. As a result, there have been responses and reactions from throughout the food allergy community. From petitions to letters, from comments to FDA to calls for clarity regarding these guidelines, our community has been vocal in response to these changes. And the FDA heard us. The FDA has developed a FAQ page and provided additional guidance to help clarify its new guidelines.
Pandemic Jolts Federal Policy for Food Labeling
Reporting by Patrick Morris
June 20, 2020
If you suffer from a food allergy, a food’s product label is essential reading. It can help determine what foods are safe to eat and which are not. Because of the coronavirus, the FDA recently has issued interim food labeling guidelines, in response to possible supply chain issues and shortages. These changes produced confusion and frustration among numerous allergy suffers. The Allergy Advocacy Association, working with other members of the food allergy community, lobbied the FDA about the possible impact these label guideline changes could have. To provide a better understanding of these interim requirements the FDA has developed a FAQ page.
The race for a vaccine to the coronavirus, can be felt in many places. From hospitals to research facilities, from schools to businesses, big and small, to even the halls of Capitol Hill. In pursuit of a vaccine, the issue of drug pricing, appears to of slowed if not stalled in Congress. The race for a vaccine, with lessened regulation and increased federal monies for drug research and innovation, have provided the pharmaceutical industry increased leverage in the drug pricing battle. While we all hope for a vaccine to the coronavirus soon, lawmakers must be reminded of the drug makers past behavior with drug pricing and the need for affordable lifesaving medicine.
With people hoping for a coronavirus vaccine, Congress has less leverage to rein in the industry.
By Riley Griffin and Emma Court
June 18, 2020
When a headhunter for the drug industry approached Michelle McMurry-Heath in January about taking the helm of a powerful trade group, she brushed off the offer. She wasn’t interested in making “bad-smelling” positions palatable to Washington. “If you’re looking for a typical lobbyist,” she recalls saying, “I’m not that person.”
McMurry-Heath holds an M.D.-Ph.D., has worked at the U.S. Food and Drug Administration and Johnson & Johnson, and calls access to medicine “the social justice issue of our time.” The Biotechnology Innovation Organization had accelerated a search for its next leader as the novel coronavirus jumped across borders, and McMurry-Heath stood out. “She wasn’t the clear, obvious choice,” says Jeremy Levin, the chairman of BIO. Its last chief executive officer was former Republican Representative James Greenwood of Pennsylvania. “But we had the opportunity to make a statement.”
A game changer is defined as “an event, idea, or procedure that effects a significant shift in the current manner of doing or thinking about something.” The possibility of a pill that could prevent anaphylaxis has that potential. For those that suffer from life threatening allergies, the ability to proactively deal with anaphylaxis would not only be welcomed relief, it could provide comfort and reassurance to their loved ones, as well as saving countless lives. And that truly would be a game changer.
By Kristin Samuelson
June 2, 2020
For someone with a food or drug allergy, the risk of life-threatening anaphylactic shock lurks around every corner. A new Northwestern Medicine study shows there might be a pill that can be taken proactively to prevent mild to life-threatening anaphylaxis, no matter the cause. Anaphylaxis is a severe, potentially life-threatening systemic allergic reaction that can occur within seconds or minutes of exposure to an allergen. It occurs in about one in 50 Americans, though many believe the rate is higher (closer to one in 20), according to the Asthma and Allergy Foundation of America. If a person’s blood pressure drops so low during anaphylaxis or their airway closes enough that they can’t get enough oxygen to their organs, they enter anaphylactic shock.