Friday, April 20, 2012

Converting Slacker Allergy Moms: Advocacy Edition

Who gets to be in the food allergy Big Tent? Any mom who has a child with a food allergy? Or only those moms who "follow the rules?"

Food-allergy advocacy almost always focuses only on the front end of the tent: getting new moms into the fold and compliant. As I pointed out in The Stress Lasagna, the accepted method to do this is to scare people silly. Talk about deaths    name the names. Scare them into carrying epinephrine and locking down their comfort zone.

After mothers have been through the mill for a while, the result can be an anxiety disorder for them and/or their child. Advocates aren't there to pick up the pieces   they've moved on to more newbies.

I obviously really dislike the scare tactics because they can have such devastating effects over time. But...I also think it's important to point out that, a good portion of the time, scare tactics do not get people into the tent in the first place.

The controversy over the new Mylan/Dey ad (see The Ethics of Converting Allergy Slacker Momsdemonstrates the limits of fear. We know a really big group of mothers take their kid to an ER, are given a talk/referral/prescription from the on-call doctor...and don't follow up. The comments on the regional advocacy sites over the last few days all seem to focus on one thing: WE NEED TO EDUCATE THESE MOTHERS!

Advocates, you're missing the point. These mothers are educated. They have seen the reaction. They have the prescription in hand. They are choosing to ignore it, despite having the information they need.

In the advertising world, we would call this customer resistance, or a barrier. And the one thing you don't do to overcome a barrier is throw good money after bad. If a message doesn't work, you try a different message.

I read a fascinating book yesterday called "The Tipping Point: How Little Things Can Make A Big Difference" by Malcolm Gladwell. In the book, he talks about how one college campus wanted to increase the percentage of students who received tetanus shots. The researcher did an experiment where he gave one set of students a "high fear" brochure with dramatic terms and color photography, and the other set a "low fear" brochure without the drama and pix. The results?
"...those who were given the high-fear booklet were more convinced of the dangers of tetanus, more convinced of the importance of shots, and were more likely to say that they intended to get inoculated. All of those differences evaporated, however, when Levanthal [the researcher] looked at how many of the students actually went and got a shot. One month after the experiments, almost none of the subjects - a mere 3 percent - had actually gone to the health center to get inoculated."
Sound familiar? Scared silly, said they would follow through...but didn't. In the vernacular of the book, the message wasn't "sticky."

The book goes on to talk about the the message and the concept of "stickiness." Stickiness says that often trivial things can tip an end user into action. In this particular case, the group with the highest vaccination rate was the one in which a map of the health center with the times it was open was given to the group. This was curious, because the students clearly already knew where the health center was. But...for whatever reason, it worked.
"If we didn't know about the Stickiness Factor, we probably would conclude that something was wrong with the way the booklet explained tetanus to the students. But the Stickiness Factor suggests...that the problem probably wasn't with the overall conception of the message at all, and that maybe all the campaign needed was a little gold box."
So, back to the Mylan/Dey commercial. The concept of the mother's convenience is the "gold box" of the commercial. ("Even with your peanut allergy and a cake made with who knows what. Because we're prepared - with EpiPen®.") It isn't about education. It's about that little tidbit that tips them into that next step.

When a commercial like this gets developed, there's generally a good bit of market research that happens first. Several concepts are developed, and each of those concepts has an emotional theme. But all those concepts generally tie back to one of two mega-emotions identified back in the Mad Men days of advertising: fear or greed.

Mylan's ad agency probably gathered as many moms with allergic children as they could get in a room. Some of them would have been the moms they were targeting - moms who knew their children were allergic but still didn't carry an Epi-Pen® injector. They would have showed them each concept and watched their response. Ideally, they would have done this in several cities, with different socioeconomic mixes. And then they would have picked the message that worked the best. They didn't even need to know why it worked  and it's often surprising which one does.

How does this relate to food allergy advocacy? Passion is great, but knowledge and effectiveness are more important. If food-allergy advocates really want to convert the slacker moms, they need to have more weapons in their arsenal than fear.

I don't really think people are mad at Mylan for uncovering the "gold box" message that works. I think the food allergy community is really mad at the slacker mothers. The ones who "get away with it", seemingly without consequences almost all of the time. Because the message they send to the world is:
Mothers who get all stressed out about their kids' allergies are overreacting. Look at me    my kid lives life without all these restrictions or prescriptions. 
We don't want to convert these women. We want to hate them.

But the negative messages that make our lives so hard are coming from them, whether stated or implied. Shooting the Mylan messenger isn't going to make these women go away.

Advocates - if you want the world at large to stop hearing this message, you're going to have to get these mothers into the Big Tent. And you're going to have to learn new circus tricks to do it   they're bored by the ones they've already seen.

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  1. This is an interesting perspective of the controversial ad. I agree scare tactics don't benefit the food allergy community and can serve to make us seem overly fearful and overly protective. I can also understand some parents either deny the need for an epi-pen or choose to take the risk. However, their ignorance and denial is no excuse for a company to air an ad reinforcing a dangerously stereotypical food allergy message. You, as a food allergy Mom, are well aware of how uneducated or misinformed society can be about our children. We strive to positively educate our relatives, friends, and school personel about food allergies and food allergy safety. This is an uphill battle and is very time consuming. Personally, I provide factual information along with realistic expectations of food allergy management. I am one person with limited public contact in the grand scheme of things. The ads produced by pharmaceutical companies are viewed by a far wider audience than any of us could ever hope to influence. As the manufacturer of a product supported and purchased solely by people affected by anaphylaxis, Mylan/Dey has an obligation to accurately portray the risk of food allergies. The advertising agency is entitled to target their audience in an effective and concise manner. However, food allergy families have a right to be upset by their choice of message. Mylan/Dey has an obligation to tell the truth. Food allergy families have a right to be outraged by horrendous misinformation spread by the very company that profits from our children's illness.

  2. Candace, my point was not that the ad was a good idea. My point was...what now?

    Let's say the ad would have worked and some of these mothers would have started carrying Epi-Pens as a result. Now they won't. Do we have any obligation to do anything about these moms, other than hate on them?

    It's probably the lesser of evils that Mylan is dropping the ad, but I don't see anything to cheer and congratulate ourselves about here. Kids without Epi-Pens. Yey.

  3. Maybe ultimately, the underlying problem is that the picture is just never going to reduce to the kind of simplicity of message that *can* be heard (and presumably heeded) by everyone.

    Are we willing to admit that there are some people with food allergy that are behaving perfectly reasonably when they eat in restaurants, travel without worry, and basically live normally about 99% of the time? That *is* probably the majority of persons with a food allergy, and most of the time, that works fine for them. These are the kids that are in classes with ours, though, and the underlying problem for us on the other side of that equation is not those other Food Allergic people-- it's laypersons (civilians, as my husband calls them). Which of our kids would they RATHER believe is telling the "truth" about what food allergy means? (duh ;) )The one that causes them no problems personally, of course. That must mean that the people on the other end of the spectrum are liars, drama-llamas, or just plain loony, right?

    Are we just BITTER that this isn't our (relatively fortunate) lot in this particular lottery? Maybe I am, at least a little.

    There are probably people who have been incorrectly diagnosed. Those people don't belong in the tent. They don't. It's better for everyone (in and out) if they aren't in here with the rest of us. The problem is that diagnostic criteria aren't even solid enough to determine with any certainty just WHO belongs in this tent. Bummer, that. Wish that it weren't so dangerous to let the public know that. Unfortunately, the default position is not one that favors accommodations for others, as noted above.

    Beyond that, however, we need to have clinicians willing to stand up and say "One size does NOT fit all with food allergy." Oh, sure-- there are some things that are the foundation of good management. Avoidance and an emergency action plan for when it fails. Yes. But the devil is in those details.

    "Avoidance" for my spouse is so different from what it means in my daughter's case that even using the same word is ridiculous.

    Which one of them is "stupid" and which one of them is "crazy?"

    Neither one of them!! Too bad there's not a way to put that into a thirty-second feel-good TV spot, huh? Mylan would also claim that my husband ought to be carrying a big bulky epipen everywhere he goes. That's not going to happen, by the way, and he's really not ignorant on the subject; he's made an informed decision on the basis of his individual medical history.

    Bottom line is that what other people choose to believe/do doesn't impact my husband's safety. That is NOT the case for my daughter. Therefore, it is ultimately more imperative for the public to believe HER than for FA advocates to believe HIM.

    People who want to live in denial even after a life-threatening reaction? Well, those people actively resist education. There is a subset of patients with any chronic condition in this category, and unfortunately, it's a pretty large percentage, generally speaking. I'm not sure how to "reach" those people, and neither are clinicians in most cases. Because their resistance to the message isn't passive. It's not ennui keeping them deaf-- it's cognitive dissonance and threatened self-identity.

    I think that an ad that endangers people like my daughter is pretty much not worth whatever it gains. Maybe that is selfish of me. I prefer to think of it as brazen pragmatism; most of the people that Mylan was trying to reach are thinking "I'm on the do-not-call list, you butthead," and calling on them isn't productive because they do not want to think about food allergies. Ever.

    Maybe we need to label the tent "free pedicures" or something. :D

  4. I'm not a fan of "scaring" anyone straight, either. Guilty confession time; even as a support group administrator, I don't routinely read (and especially RE-read) those memorial threads. I'm perfectly well aware of the consequences of mistakes, and I don't need any additional anxiety to remind me.

    I don't use fear with others much, either. Fear short-circuits higher order cognitive functions. That's not productive with something so critical and so complex. I am a pretty big fan of patiently explaining "It's not that simple." I have to say that I probably owe a lot of the current attitude there to my long-standing relationship with the FAB. :) There was a time when I believed in a certain Orthodoxy that didn't allow for pluralism. I don't feel that way anymore.

    There are three rings inside this tent, right? One for the elephants, one for the trapeze act, and one for the clowns. Maybe we'd all be better off if we didn't have to choose which of those things we mean when we say "Circus."

    The psychology of avoidant behaviors and emotional risk-benefit analysis is really fascinating. We as allergy parents tend to think that if we just become more shrill, more strident, more emotionally appealing, more-- well, more urgent-- then our message will be heard. That's not true, and it often has a paradoxical effect instead, because we get others using that visceral, limbic brain to respond to us, and they aren't THINKING rationally at that point. We'd all do well to understand that and incorporate it into our work as advocates.

  5. I think that was well written but I do not agree with you premise that these parents who do not already carry epi pens KNOW all this information already and are choosing not to listen to it. That is not my experience at all, both before I understood the seriousness of my child's allergies and also in other parents I know in real life. In ALL cases of people who have food allergies and do not regularly carry epi pens or who do not follow other common safety procedures there they all lacked information. This is so common that it is what I think is the driving force behind most advocacy. It certainly is with me. If I'm pissed off any anyone it is doctors who are less up to date on food allergies that *I* am. Those doctors are to blame. When my son was small and kept reacting multiple doctors including one allergist who should have his MD revoked told me it was nothing. Then my son had very bad anaphylaxis and I was not at all prepared. I was SEEKING help and information and yet doctors failed me so I could have failed my child and was just lucky he is OK in spite of this. Others I know also were not told full information so they don't carry epi pens. This isn't their fault. I think telling those parents, 'hey, the epi pen is so small and easy to carry and like insurance or a seat belt. You hope you won't need it but if you do it will be there in your purse (or whatever)' is a nice thing to say to them. And, yes, they should absolutely know that their children can die if they don't have epi pens and their child has a reaction. most ana is going to self-resolve but I wouldn't bet the bank on that. it almost sounds in this post of yours and another one here that you don't think anyone should mention the fact that food allergies can be fatal. That's a very important fact.

    The same is true for people who don't give the epi when they should, who feed themselves or their children food that is high risk and engage in very high risk behavior. This is often, in my experience and that of people I know, due to lack of information, not that people realize that what they are doing is super high risk and can result in death.

  6. Gardengirl, there's a big difference between stating that allergies can result in death (as can asthma or driving) and intentionally programming our advocacy and self-talk to continually focus on death. Once precautions are in place...what purpose does the latter serve?

    And with regard to information being all that's needed for advocacy...I guess I would ask then why we're still having such trouble getting people to take allergies seriously. Are we doing a bad job communicating? Are there not enough of us to get the message out?

    Mylan said in their response to the commercial that 90% of patients who should carry an Epi-Pen do not. If all it takes to convert them is better information, then we must be really terrible advocates.

    P.S. Read the paragraph about the students who nodded about the dangers of tetanus, said they would get the shot and then did nothing. Your batting average may not be as high as you think it is.

  7. I agree with that for those who KNOW. If a person is aware of things then harping on those things may not be so helpful. I like to think of FA stuff as putting on a seat belt. When I get in a car if I thought about all the accidents people have, etc each time I would be a scared driver. I put on my seat belt and go. I carry the epi pen, check ingredients, etc and we live our lives. I don't think about the epis in my purse. I know they are there but they aren't on my mind. So, I agree with that.

    However, I think that most newbies lack full info because doctors on the whole are not doing a good enough job educating people about food allergies including some allergists. so, people get diagnosed or kids have reactions and parents lack enough info to know how to protect their kids or to know to always carry those epis, not eat that 'whatever it contains bday cake', etc.

    You assume that those parents who you say are already educated but choose to not carry will actually use the epi pens they may be coaxed into carrying by that add. I think most wouldn't use them until their child had severe breathing issues or unconscious so even then lack of info could continue to be a much bigger issue.

    We are having trouble getting people to take FAs seriously for many reasons and that's an EXCELLENT question. Mylan said 90% who should self carry don't but I wonder if the % of FA people is 90%. That includes stinging insect people, latex, etc so it might be different for just FA people. I would think a higher % of FA people who have kids 18 and under are carrying.

    It isn't "we" who have to be the advocates to get those to carry. It is DOCTORS. I'm not the doctor who told me that I was just a worried mother. I'm not the pediatrician who told me that I didn't have to take my child to an allergist and that all kids get hives and that it was no big deal his eyes were swelling shut and lips swelling and he was vomiting because those weren't allergic reactions. I'm not the doctor who didn't want to give me epi pens. It is doctors who are doing a lousy job often times. I think having a doctor tell people, 'your child has potentially life threatening food allergies. You must read every label (and call companies if you have non-top 8), you must always carry the epi, have your child always with someone who knows the signs of ana and how to give the epi and your child's emergency plan, etc, etc' that a very high % are going to comply. Doctors are not doing a good enough job of this from what I read. So many of us have had bad experiences with doctors giving partial info or no info or next to no info. I can tell my friend until I"m blue in the face that she might want to see an allergist/get epi pens but she won't listen to me the way people listen to doctors. Many people do not question doctors at all. I think that's the biggest source of the problem. I could be wrong but that's how I see it.

    I respond well to having people push me with fear, by the way. I was not following our emergency plan and failed to give the epi a bunch of times and people pushed me hard and pointed out my child have died and since then I've given it when I should have. I was thankful to them. Everyone is different. Without those pushes my child may have had a very bad outcome his last couple reactions.

  8. GardenGirl, the reason it is a "we" (with regard to converting non-compliant moms) is that *we* are the ones who are taken less seriously because moms like this are out there. Every FA mom I know has a story about one of these parents who downplays allergies. The problem is...they talk to others, so even if we ignore them, they affect us. For every message we send to our schools about precautions, these parents are sending a counter message of "it's no big deal."

    Sure, we can rely on doctors to do the work...but they're not doing it. Mylan took a shot at it, but got shut down. That's leaves advocacy.

    If advocates continue to convince only 10% of our own community, can you blame others for believing allergies are overblown or even made up?

    If I were an advocate, I would think it was pretty stupid to keep preaching to the choir when the church behind me was empty.


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