Saturday, March 9, 2013

The Rise of Food Allergy Hate Advocacy

What will the future of food advocacy organizations look like in 10 years?

I've thought about the NickMom controversy a lot this week. I've also continued to read the controversy on the site (and the inevitable backlash from people who think food allergy parents are over the top) and I've come to a conclusion:

At least some food allergy parents want the
opportunity to fight hate with hate

Over the last year or two, the food allergy community has seen the rise of small, but growing, advocacy groups that use confrontation of "food allergy enemies" as a means of bringing in new members. When the NickMom controversy popped up, these groups all immediately jumped on the bandwagon, insisting that they were in it to BRING JUSTICE TO ALL OF YOU! They were going to CALL and WRITE until the WRONG was RIGHTED!

Do they do any good? Probably not (though they ALL take credit afterward for getting the video or commercial or comments pulled). Like it or not, the only voice in our community that has any pull is FARE, simply because of their size. (That's most likely why KFA and AAFA merged recently as well — small is just not as effective.) But people felt like something was being done for them, and that's what really matters.

Is that really the preferred approach? Fighting bullying with more bullying? (One new food allergy foundation describes itself as the "louder voice in the food allergy community.")

I know a lot of my readers really disagree with me on this one. Hate buzz always feels so good and, when you've spent so much time being marginalized by others, it can feel great to finally lash out (or have a proxy group do it for you). But does it work?

Creating new legislation is not sexy. There's no emotional release upon hearing that FARE got a new bill passed. Research is slow and methodical and incredibly expensive. It's so much more emotionally satisfying to give money to a group willing to jump hard into any skirmish.

Will the next 10 years see the rise of a Food Allergies Hate Advocacy group? (Is already taken?) Will some of these smaller groups combine and become the "Act Up" of food allergies? If they do, is it a good thing or a bad thing?

Looking at the history of AIDS advocacy, many people believe it was the quiet, behind-the-scenes work to change laws that made the biggest difference in the lives of AIDS patients. However, in-your-face advocacy probably did impact the amount of research funding going to AIDS.

$20. $50. $26.91 collected for a FAAN walk. All of us small donors, added together, amount to very little clout. Sometimes it can seem like the only way to be heard is to shout the loudest, or punch the hardest.

When nonprofits think about advocacy campaigns, they break it down into relatively simple terms: who are the allies? Who are the (true) enemies? What is the measurable goal? What message will motivate the largest number of allies to contribute to that goal?

I think we can all agree that a goal we share is to find a cure for allergies. It's important to recognize the people who do NOT care about this goal. Pharmaceutical companies. People who taunt our children. Hollywood. We are wasting our time and energy going after Mylan commercials and NickMom videos and random hate posters, even if it makes us feel better.

I wish FARE could figure out what to do with all the misguided energy beyond walking once a year in our own little communities. We need a "Find The Cure Now" type advocacy effort that we can all get behind. We need more awareness of how big the problem really is (now 1 in 13 kids, $500 million a year) and how little the response has been: about $33 million TOTAL annually for government research.

If you want to get depressed, click on the table to see where we're spending our research money in America. ($87 million for anthrax? Really?) One in 13 kids presumably means at least one parent is affected by food allergies. ~80 million people in the U.S. alone who are touched by food allergies. More, if you count friends, classmates, etc..

Anyone looking at those numbers would conclude that food allergy parents are terrible at advocacy. Can we get better? Do we want to?

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  1. excellent post. none of my energy or money is going down the drain of hate and revenge. i am giving it all to FARE. i hope our community can get smart and do the same, then progress will be made.

  2. Wow, excellent post. Couldn't agree with you more!!!!!

  3. My son has an 8 peanut tolerance thanks to private practice OIT, and I spend most of my time trying to make parents aware of the possibilities of that treatment. And now private doctors, thanks to Dr. Nadeau's research, are treating multiple food allergies--so far without any drugs (xolair).

    Occasionally I am called to attention by food allergy advocacy groups to something so inappropriate such as the NickMom thing, (I already wanted them off of my children's practically ONLY tv station), to write my feelings on their fb page regarding their slam on food allergic children and families. I've never given money to FAAN/FARE and I can't see that ever happening considering their past non-helpfulness of OIT, anaphylaxis advertisement, etc... But NOW they are funding some of the current treatment studies (laced with Xolair but still a helpful gesture). So I would never urge others NOT to volunteer all their energy, resources, time, marital well-being to devote to FARE walks or get-togethers. After all, sometimes they give you a title?

    I'm not sure what you expect people to do with all the nasty, negative energy directed at them and their children's isolating, medical condition. FAB has a small cult following, and I admire your tenacity to write how you feel without concern of losing them by labeling them "haters of haters." And I don't think you are trying to rally funds for FARE, so I ask what you would have them do instead? Just let it go?

    Each time I comment on one of the food allergy articles, usually at least a few people join our group, learn of the possibility of OIT treatment from the hundreds of families who are involved--because the news from researchers is sadly tainted by their desire/need to keep OIT out of private offices so they utilize fear tactics that it isn't working well enough yet. And the families wouldn't have a clue of where to find a board-certified allergist who could help them right now--without waiting decades for all the "experimentation to conclude" if ever.

    I do feel like we are fighting a losing battle most of the time so I have limited my participation in most food allergy groups to focus on treatment, yet I cannot just sit and do nothing? But I do not agree with fighting hate with more hate.

    So what do you suggest people do? Turn the other cheek? Just turn off the computer (which has been a great stress relief to me.) What? What do they do with their anger and sadness? How do they convert that negative energy into something productive?

  4. Well...I write a blog.

    Seriously, there's a quote by someone who said "he who angers you, conquers you." It may feel good to vent the hate, but it doesn't help our advocacy cause. What I suggest is education without anger. Don't rise to the bait.

    And Liseeta, as you know, my son also has an 8 (wait - 9) peanut tolerance through a different clinical trial altogether. No one has a clear answer on any of this yet, so is evangelization really appropriate? I know you're trying to help, but sometimes it can come across as "my way or the highway." OIT is not the only answer. It may turn out not to be an answer at all.

    I really do not believe researchers are working against the best interests of our children. There are concerns about OIT that you consistently choose not to mention when you post about OIT. I realize that, as a parent of a child whose signed up for OIT, it can be really scary to talk about the negatives and you almost *have* to drink the Kool-Aid just to get through it. However, I think it's important for parents to hear all sides of an issue before they make a decision about whether to participate in something like this.


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