Thursday, June 10, 2010

Underwhelmed by the Hypoallergenic Peanut

Or is it hypo-whelmed?

Recently, there has been a flurry of articles talking about the research and development of a genetically modified peanut that does not contain the proteins responsible for trigger peanut reactions. I'm not all that excited about this development, and I'd like to try to explain why.

First of all, I recognize that this is well-intended and will possibly give Ryan more food options. I'm always glad when people try to do nice things for us living with food allergies, and so I really don't wish to sound ungrateful (well, I might sound ungrateful, but it's not my intent, honest). I recognize that having more food options can be a value to those living with food restrictions. And I can see a possible value in this development IF it is used as part of some kind of immunotherapy for people with peanut allergy. (Though if they're making them non-allergenic I don't quite see how, but I might be wrong about that.)

Also, it's strange that the hypoallergenic peanut is making news lately, unless there's been a new breakthrough. But I first became aware of this research years ago. But that's a very minor thing.

Anyway, on to my objections to this new kind of peanut.

I think it's insanely irresponsible that the media (I HOPE none of the scientists are thinking this) thinks that a hypoallergenic peanut will "free millions from fear" (as the second link above suggests). That is really absolutely untrue and sensationalistic. As long as they keep making the regular peanuts with the proteins that people like Ryan react to, we will not ever be free of the worry and stress that comes with the territory of Life with Food Allergies.

Sure, he might have more options, but the things we (and he) would need to do to keep him safe would not change. We'd still have to research companies and restaurants and make phone calls and talk to managers. We'd have companies whose labeling policies we'd trust and companies we'd avoid no matter what (Duncan Hines, I'm looking at you!). Note: I make my own independent decisions to trust labeling practices, and my trust is in NO WAY based on the government's food labeling laws. That wouldn't change if companies started using hypoallergenic peanuts in their products. I'd still research them and make up my own mind about whether we can trust them.

I worry that a hypoallergenic peanut would make well-meaning people even more confused about Life with Food Allergies. It took FOREVER to get some people to understand that We. Don't. Take. Chances. EVER. I can imagine that it would be easy for someone not in our shoes to get confused by the List of Things with Non-Safe Peanuts and the List of Things with Safe Peanuts. I can imagine this because I've lived it already--the confusion between the List of Things that are Peanut-Safe and the List of Things that are Not already exists. Not fun.

I wonder about how and where they'll grow these new peanuts. If they get cross-pollinated by bees with the regular kind of peanuts, will they still be safe? How will they control for this possibility? They can't keep genetically-modified corn out of the regular corn, right? I'm not a scientist, but I have to wonder if the same thing would happen with these peanuts. And I haven't ever seen this issue discussed in the many articles I've read about this topic. I'm really curious--would the hybrid peanuts be safe or not? And again--who with a peanut allergy would be willing to take that chance?

I honestly wonder if Ryan would even want to try a hypoallergenic peanut. He has expressed curiosity about peanuts, but I honestly don't even know if he'd eat it. I have a few food allergy friends who have expressed the same thought--that they (or their food-allergic kids) wouldn't even go there anyway. We've all learned to live without them. I wonder if those who are dealing with lots and lots of food allergies would be more likely to try them, since their diets are much more restricted than Ryan, who only has the one allergy.

But here's the real reason I'm underwhelmed by this exciting news about a peanut without allergens: it's an answer to the wrong problem.

Let me try to explain.

Ryan's problem could be stated this way: "Ryan can't eat peanuts because he's allergic to them."

Or it could be stated in this way: "Ryan is allergic to peanuts and can't eat them."

It's subtle, maybe, so I'll try again. His problem isn't that he can't eat peanuts--it's that he's allergic to them. He is living just fine without eating them! Okay, so they're both problems, but the lesser problem is that he can't eat peanuts. The more ginormous problem is that if he eats enough peanut protein, he could die.

And this is concerning to me, because I have to wonder how researchers got started down this road of researching and developing a hypoallergenic peanut in the first place. It's as if some (well-meaning, I sure) person thought "Those poor people can't eat peanuts. Let's make them one they CAN eat!"

Instead, I want them to think "Those poor people could die if they accidentally eat even 1/1000th of a peanut. Let's find a way to make that reaction NOT happen!"

It's like looking at a drowning man and thinking "Wow, that guy is in danger from all that water! Let's take some of the water out of the pool!" --instead of just throwing the poor guy a rope and saving his life.

It's not a perfect analogy, but I hope it makes some sense. People living with food allergies are LIVING with food allergies. Yes it's a pain and scary sometimes, and involves research and research and vigilance and Epi-pens and Benadryl and vigilance and education. It's not fun, and I don't wish it on anyone.

But we are managing around the bigger, scarier, more ginormous--and in my opinion--REAL problems: that some foods trigger terrible allergic reactions in some, but not others.That nobody seems to understand or predict the causes. That nobody can predict the severity of any given reaction based on the person's personal history. That there isn't even an agreed-upon definition for anaphylaxis! That children in some states and counties are not allowed to carry their Epi-pens with them at school, and that EMTs in some states are not allowed BY LAW to administer an Epi-pen in a food allergy emergency. That there is NO treatment to prevent reactions. That there is NO cure.

The problem isn't that Ryan can't eat peanuts. It's that he's ALLERGIC to peanuts. So please, researchers, find us an answer to that problem. Do something else with those hypoallergenic peanuts, because I don't want them.

UPDATE: I added a few sentences to the next-to-last paragraph, and re-worded my drowning man analogy.

14 comments:

C. August said...

Your discussion led me to draw a parallel I hadn't before. You said:

"His problem isn't that he can't eat peanuts--it's that he's allergic to them. He is living just fine without eating them! . . .

It's as if some (well-meaning, I sure) person thought "Those poor people can't eat peanuts. Let's make them one they CAN eat!"


Reading this, I had the thought that I have recently gotten rid of peanuts in my diet, not because I'm allergic, but because I think they're not good for me.

I'm on the paleo diet, and one of the neolithic agents I avoid is lectin (a specific type of protein) because of its atherogenic (plaque causing) properties. Peanuts -- a legume -- are FULL of lectins.

So, I can now understand better your formulation. The problem isn't that I can't eat peanuts -- the problem is that I think they're bad for me so I avoid them. And I'm doing just fine with that. Same goes for sugar and grains.

I would probably avoid them if scientists developed a lectin-free version as well (unless it was proven not to cause other hidden problems).

Lisa said...

Great post, Jenn. We're dealing with peanut allergy here too, and I always wondered why people were bothering with these hypo-allergenic peanuts. I completely agree with your thoughts on the matter -- well said!

kelleyn said...

Hi Jenn,

You are right to do your own research and not trust labeling laws.

There is a certain common and naturally occurring chemical that I must avoid in my diet, too. Members of my patient community have gotten zinged when a) a formerly trusted company started supplementing their products with this chemical, yet let their old packaging run out before putting it on the ingredients list, and b) the ingredients included a product that was supplemented with the chemical (labeling laws don't require these second generation ingredients to be listed).

Once, I became lax and failed to check the ingredients on a product that I had safely used dozens of times before, and sure enough, that was exactly when the company had changed their formulation.

You are also right to question why we don't understand the underlying conditions behind allergies and many other conditions and diseases. Bad philosophy among scientists, as well as government interference in the incentive structure, have gotten our research priorities messed up.

Jennifer B said...

Amazing post! Thank you for writing it. I completely agree with it.

LissaRFAK said...

Dead on, Jenn, dead on. The relief we felt when our 3 year old daughter passed the peanut oral challenge was in no way "Hooray, she can FINALLY eat a peanut butter sandwich!" It was a huge worry to take off the list of THINGS THAT CAN KILL HER.

Jenn Casey said...

Thanks for your comments, everyone.

The more I think about it, the more I realize just how important it is to define things properly before you begin. Honestly, I wonder if we PA folks should enlighten these scientists--could it really be possible that they truly think that what they're doing will improve our lives? Is it really possible that they don't know that hardly anything about our lives with PA will change because of their efforts?

How a scientist defines a problem shapes how they go about pursuing the solution. How a parent defines a problem shapes how she goes about pursuing the solution.

And making sure that the problem matches reality is key to all kinds of problems in the world, methinks.

Anonymous said...

I was uneasy when I read the article about the engineered peanut, but was still "mulling it over". Well, I think you've nailed it! It's kind of like how some peanut oil is supposedly "safe" for people with peanut allergy, but some isn't. Early on in our child's diagnosis, my husband and I decided we didn't feel comfortable letting our child have any peanut oil, because it seemed too confusing. I feel similarly about the supposedly "safe" peanut that is being engineered. Thanks for your excellent post.

ChupieandJ'smama said...

Yep, agree with you! The whole thing makes me nervous. And like you, why is this coming up again now? I remember reading this a few years ago. It's nothing new. Maybe the researchers just needed more press for more funding or maybe the news was just slow again.
Thanks for your thoughts. They are dead on. I left mine here: http://community.wegohealth.com/group/asthmaallergy/forum/topics/peanut-allergy-has-what-is?xg_source=activity

Tori said...

I'll be in the minority here, it seems, but I have to disagree with you. I think that creating a hypoallergenic peanut, or any other food allergen, is a monumental step forward for food allergy sufferers and offers a significant improvement to their quality of life. Perhaps this is just a function of my particular allergy, because egg is a key ingredient in many more recipes than peanut is, but if scientists could invent hypoallergenic eggs, I would be so ecstatic I would probably try to bathe in them. It would be a wonderful, monumental step forward for me and a gargantuan improvement to my quality of life, even if it just meant I could enjoy an omelette in my own home. I can't even imagine how freeing it would be, even if only at home and only some of the time, to be able to eat like a normal person! For the peanut allergy sufferer, I imagine it would be as satisfying, if safe products containing hypoallergenic peanuts were on the market, to fill the home with safe-to-eat peanut butter, candy, peanut oil, etc.

Sure, food allergy sufferers will always have to be vigilant about what they eat, at least in the foreseeable future. We will always have to do our due diligence, whether we're eating in a restaurant or buying from the grocery store or traveling abroad, trying to communicate in a foreign language about our allergies. But imagine an airline that serves certified hypoallergenic peanuts--peanut allergic people won't have to worry about calling a flight ahead of time to request pretzels only on the flight because they can't inhale peanut dust, or fear that the airline might make a mistake. That would be incredibly freeing! Of course we'll always have to check labels and make up our own minds about who we can trust and who we can't, but hypoallergenic foods would certainly free allergy sufferers from a number of situations where we'd otherwise have to worry.

With regard to problems with growing the new peanuts and potential cross-pollination, I would assume that that's an issue the free market would take care of. It's in a company's interest to ensure cross-pollination doesn't introduce harmful proteins into the end product. If it does, and results in a non-hypoallergenic peanut, the product wouldn't last long in the marketplace. It would also be in the company's interest to conduct tests to determine that the peanut truly is safe to encourage consumer confidence.

Finally, I believe researchers who are working on the hypoallergenic peanut are doing so because they see a demand in the marketplace for one--not because they feel sorry for allergy sufferers, but because they want to market a product that allergy sufferers will buy. I think it's safe to assume that the particular scientists working on the hypoallergenic peanut wouldn't otherwise be devoting their time and effort to curing peanut allergy. They're likely genetic engineers working in an entirely different field from allergy researchers. I don't think this endeavor takes away from the effort to cure food allergy in any way; it's a side effort, and I know that research to cure peanut allergy is going on all the time as well.

We can both agree that a cure for food allergy is better than a hypoallergenic food. I think a cure is the clear and obvious choice between the two--if we could choose. But in the meantime, I think hypoallergenic foods have a strong potential to add value to a food allergic person's life, and that the research & development that it takes to produce them doesn't take away from the parallel research that will hopefully one day find a cure.

Bill Brown said...

I think it's a good step because there are a lot of people with peanut allergies who can intelligently assess the presence of peanuts and make the necessary evaluations to determine if a given product is safe: adults. If these things taste the same as regular peanuts and aren't too much more expensive, Reeses could switch to them and make peanut butter cups with them. My father could finally experience one of those; that's a huge deal because they're wonderful.

Also, as is often the case with specialization, the scientists working on the hypoallergenic peanut are probably not the same ones who would work on curing a peanut allergy. So it's not the case that this "folly" is distracting from that vital work.

I have a peanut allergic child and I'm mildly allergic to peanuts myself (I eat it but it makes my mouth sizzle). I agree with the post as it applies to children.

Jenn Casey said...

Hi Tori and Bill, I appreciate your comments.

I don't think a hypoallergenic peanut is without value, it's just not as big a value as many seem to think it is.

I'm not confident there will be free market solutions, either. I didn't mention this in my post, but this development is being spearheaded by the USDA. I'm not at all confident that ANY market research as been done to determine if there actually is a customer demand for it and the size of any such demand, let alone that there will be any market influence in the sale (or not) of such a peanut. That's an entirely different issue, and only serves to underscore my concern that these people are trying to solve the wrong kind of problem, one of lesser importance.

Of course I know that most R&D of this type is funded at least partially by the government. But this idea came from the USDA, not doctors who are working on treatments and cures. That alone makes me extremely suspicious of the motivation behind the development of this Wonderful! New! Product! that will Make my Life Worry-Free!

(That snark isn't directed at either of you, btw!)

Tori said...

I've been thinking more about this, and I have to say that I do think my perspective is strongly colored by my own allergy, as I mentioned in my post. Being allergic to eggs is just such a different experience from being allergic to peanuts--in good ways (because my allergy isn't life threatening) and in bad ways (because eggs are present in SO many more foods than peanuts). Both allergens present their own challenges, but I do think allergens like eggs, wheat, and dairy impose much more of a dietary restriction on sufferers than, say, allergy to strawberries, shellfish, or peanuts. So, science, where is my hypoallergenic egg?? :)

Anyway, as always, thanks for the great thinking topic!

Total Geek said...

I think your approach is smart, but I also think that you've missed the real point of a hypoallergenic peanut, and that is a relief from the worry that my daughter will accidentally ingest peanuts despite our best efforts to avoid them. If all peanut products were made using this new product (and that shouldn't be a stretch), then this could be a reality.

Also, I've see the researchers speak about this and it isn't a genetically modified plant at all. Making peanuts safe is just a matter of exposing the nut to enzymes that destroy the allergens. So, if you want to eat just plain peanuts, then they would be produced normally. But any peanut product that goes into other foods would be exposed to this process and the food would be safe for everyone, even peanut butter.

Total Geek said...

I think your approach is smart, but I also think that you've missed the real point of a hypoallergenic peanut, and that is a relief from the worry that my daughter will accidentally ingest peanuts despite our best efforts to avoid them. If all peanut products were made using this new product (and that shouldn't be a stretch), then this could be a reality.

Also, I've see the researchers speak about this and it isn't a genetically modified plant at all. Making peanuts safe is just a matter of exposing the nut to enzymes that destroy the allergens. So, if you want to eat just plain peanuts, then they would be produced normally. But any peanut product that goes into other foods would be exposed to this process and the food would be safe for everyone, even peanut butter.