The following article was published in early 2011. The Food Allergy & Anaphylaxis Network is now the FARE  organization.
On January 4, 2011, President Barack Obama passed the Food Safety Modernization Act. Tucked into this sweeping act as Section 112 is FAAMA, the long-awaited Food Allergy and Anaphylaxis Management Act.
The Food Allergy & Anaphylaxis Network led the lobby for FAAMA, which will result in voluntary allergy management guidelines for schools across the United States. FAAN started pressing for the legislation back in 2005, when it held the first of three Kids’ Congresses on Capitol Hill. [Update: the CDC guidelines were released in 2013.]
Allergic Living Editor Gwen Smith interviews Chris Weiss, FAAN’s vice president of Advocacy and Government Relations, about FAAMA and what the guidelines will mean for American students at risk of anaphylaxis.
Q&A: WHAT FAAMA WILL MEAN
Gwen Smith: To start, after five long years of lobbying, how did FAAMA finally get passed?
Chris Weiss: Senator [Christopher] Dodd from Connecticut, early in 2010, was able to insert FAAMA into the larger Food Safety Bill. The reason he did that – and it was very smart on his part – was because Congress was pretty busy last year and the chance of Congress considering FAAMA as a standalone bill became sort of unlikely. The chance of Congress considering the Food Safety Bill, however, became probable. And so Dodd was able to insert FAAMA into the larger Food Safety Bill [officially known as the Food Safety Modernization Act].
GS: Can you explain to the food allergy community: What does this new law mean?
CW: It simply calls on the federal government to create food allergy management guidelines for the schools. This is a tremendous thing because, to date, there has been no guidance from the federal level at all on food allergies. A few states have published guidelines, some school districts have done so, some individual schools have done so. But there was nothing coming down from the federal level.
GS: And why is that so important Chris?
CW: Well basically because it gives any school in the U.S. – in any state, in any town, in any city – it gives them something to look to if they need help managing students with food allergies. In essence, we sort of killed 50 birds with one stone by passing this law. Any federal guidance [in the guidelines] would be applicable to all 50 states.
GS: Allergic Living is getting some specific questions such as: “But I live in New York state and there’s a law, or in Massachusetts, we already food allergy guidelines in the state. How will FAAMA work in conjunction with what’s already in place in those states?
CW: This is a good question. There are about 12 states that already have published food allergy management guidelines for schools. Roughly 12, give or take one. If you look at all of those documents, they’re essentially the same. They’re 99 per cent similar.
Whatever comes out of the federal government as a result of FAAMA will likely be similar to these existing state documents.
So it’s not as if the federal guidance will trump the state guidance. It’s not as if the state guidance will trump the federal guidance. Everything is going to be essentially the same content. [CW agrees that federal guidelines will be reinforcement for a state law.]
GS: What can you tell us about the incentive grants to encourage schools to adopt the guidelines?
CW: The act says money is to be made available to school districts who can demonstrate that they have embraced the national guidelines. The logistics of that are being worked out.
GS: Do you have the precise content yet for the new guidelines, or is that yet to be developed?
CW: It’s in the works. There’s a division of the CDC [the Centers for Disease Control and Prevention] called DASH. They actually started working on these guidelines about three years ago. DASH had the foresight to see that FAAMA would eventually pass. So they started creating some guidelines with the help of FAAN, NASN [the National Association of School Nurses] and NSBA [the National School Boards Association]. We’ve been collaborating with DASH for about three years now on creating guidance materials.
GS: What types of things are you looking at, Chris?
CW: Nothing has been published yet, but directionally we’re looking at a stricter set of guidelines. It’s almost like a tool kit, which will have various components geared toward specific people of the school. You’ll have a component which might be a manual with an accompanying DVD for school nurses. You’ll have a component for administrative [including teachers and staff]. You’ll have a component for parents. [Update: the guidelines  were released in 2013.]
GS: Some people are concerned about whether a federal law with voluntary guidelines will carry as much weight as a state law. What can you tell them about that?
CW: Well, I’m not sure about that statement. As I said before, 12 states have guidelines. Now, the laws that were passed – some of those guidelines are the result of laws.
So, for example, New York is one of those states, Illinois is one of those states, where you had a bill introduced into the state legislature. The bill called for the creation of state-wide guidelines. The bill was signed into law therefore the state had to create state-wide guidelines, which they did.
GS: So then if I’m taking my child with food allergies to school, right now if I happen to live in Illinois, there will be good allergy training and accommodation. But if I’m in another state without such a law ….
CW: Yes – that’s another reason why passage of this national law is so important. Because if you are in one of those 38 states that does not have guidelines, well guess what? Now you’re going to have guidelines.
GS: So just to confirm, despite the word “voluntary”, this is a very big deal for families of students with food allergies?
HOW FAAMA PASSED
GS: What was it like on the day or days that FAAMA seemed like it would finally pass?
CW: It was really nerve-racking. Between October and December of last year, it was like a yo-yo. It was like, “OK, they’ll consider the Food Safety Bill today”. “Oh no, they won’t, they’ve re-scheduled it.” “Oh, they’re going to reconsider it.” “Oh no, they re-scheduled it.”
So there was this kind of back and forth where at FAAN, one week we were very optimistic but the following week we were convinced the bill was on life support.
Next: The support of tens of thousands
CW: The following week we were convinced it was dead. Then the following week we were optimistic again. Then wouldn’t you know, ultimately it passed.
What it came down to was the Senate passed the Food Safety Bill, so the Senate passed FAAMA. But then there was a procedural technical glitch so it had to go back to the House but because of this procedural glitch, the Senate passing it was sort of nullified. It was almost like we had to go back to square one.
But what happened was the folks in the House found a way to sort of override the glitch, which we were very grateful for.
GS: When did you finally realize FAAMA would pass?
CW: The day I knew when it passed was the day the House passed it. [Just before Christmas.] I can remember watching it on C-SPAN, watching the House vote and seeing the tally on the bottom of the TV screen. And when it passed, it was great.
GS: After all that work .…
CW: Yes, the man-hours that went into this. You’re talking three Kids’ Congress events, with about 100 families at each event on Capitol Hill. You think of all the mailings we did, asking people to contact their member of Congress. You think about all the times we mentioned it in FAAN newsletters, you think about the hundreds of phone calls and e-mails we’ve gotten. You know, it’s staggering to think about how much effort went into this.
GS: How many people wrote in support of FAAMA?
CW: People who wrote to either a member of Congress and/or FAAN? I’d have to say tens of thousands.
GS: Anything else you want to say about FAAMA?
CW: I just want to thank everyone that helped. I mean, we could not have done this without the food allergy community across the U.S. and these tens of thousands of families. We could not have done it without them.
I’m also thinking about the Kids’ Congress meetings. I can recall vividly being in the office of a member of Congress and sitting with a family with a child – a little boy who’s about 7 years old. Seeing the child speak and the member of Congress sincerely interested in what the child was saying.
It’s kind of romantic in a way. You can be as critical as you want of government and the legislative process – but in the end, a constituent talks to the person who represents them. That really is how it works.