On February 27, 2014, CBC The Nature of Things aired an episode titled”The Allergy Fix” produced by Dreamfilm, a Vancouver documentary company. I became a fan of the show’s host, Dr. David Suzuki, when I used the textbook he wrote on genetics as part of my undergraduate science degree. I was interested to watch the show, which I knew was about peanut desensitization, due to the promotional e-mail messages I received in advance notifying me of the premiere.
The show began with Dr. Suzuki stating: With food allergies more than tripling in two decades, birthday parties are no longer a simple pleasure. Many children live in fear of food. Scientists are looking for answers to the allergy epidemic in unusual places, like the barns of Amish farm families. And some researchers are experimenting with bizarre treatments (Ominous music, video clip of cluster of worms, and enlarged image of mouth of hook worm.) Researcher – I have to say that I am not comfortable with being infected with worms.
Dr. Suzuki: Or perhaps we can fix the allergy epidemic by feeding children tiny bits of the foods that threaten them (happy looking boy in hospital bed). Maybe soon we’ll be able to send kids to birthday parties without worrying what’s in the cake… The assumption has been that kids with food allergies should be protected from exposure to the threatening foods. New research is testing that assumption. This boy’s parents will watch as he’s fed gradually increasing doses of what for him is a deadly substance: peanut.
From the parents: We’ve spent the last 4 ½ years ensuring that he doesn’t come into contact with peanut, so now we’re giving our consent to expose him to peanut, so for both of us, it’s very anxiety provoking.
It is explained that this boy (William) is part of a study at McMaster University run by Dr. Susan Waserman which hopes to desensitize him to peanut. William’s properly informed parents express that their biggest hope is that he could accidentally ingest a [one] peanut and not have a catastrophic reaction. In other words, they are correctly informed that successful desensitization will offer some protection if William has accidental exposure to small amounts of peanut by raising the threshold to cause a reaction. His parents understand that this therapy may give desensitization, not true tolerance, and it will not allow William to eat peanuts freely.
Says Dr. David Suzuki: The principle behind desensitizing is simple. Begin with tiny amounts of the offending food mixed in a flour, then gradually increase the amount over time in the hope of training the immune system to accept the food.
Have you noticed the problem with this script yet? Never is the statement made that this should only occur in a hospital setting, and that it should never be attempted at home or in a hospital parking lot. Only the most alert and informed viewer would notice the subtle comments of Dr. Stuart Carr and Dr. Gordon Sussman about the questionable safety of trying desensitization in an allergy medical office, rather than at a hospital. I was disappointed to see Dr. Carr justifying his attempts to desensitize patients in his office outside the hospital setting with the statement that he believes that for carefully selected patients, the benefits outweigh the risk. That statement was particularly confusing since his patient, Elizabeth, is shown, whose in-office treatment for milk allergy desensitization had to be called off because her reactions were too strong. All major food allergy researchers, including Drs. Hugh Sampson, Kari Nadeau, Wesley Burks, and Robert Wood, agree that OIT is still an experimental procedure which should only be done in a controlled situation in hospitals, not in doctors’ offices.
I felt it was a tremendous shame that the demonstration at the 5 minute point of young Elizabeth firing an EpiPen into an orange uses an old model of the pen, which has been obsolete since 2010, a full 4 years ago.
This “documentary” came across as a very long commercial for desensitization that in my opinion did more harm than good. The word that kept coming to my mind was “propaganda.” As Dr. Waserman stated at the 2013 EpiPen Roundtable meeting, “All opinion makers say that desensitization therapies are not ready for prime time yet”. Why then was it literally on prime time? I kept wondering, who pitched the idea and why, and who is paying for the press releases and cross country press tour that led up to the premiere?
I watched the video of William’s peanut trial twice, and I cried both times, since it breaks my heart to see him scared to death. The narration minimizes this when David Suzuki says that “William is clearly nervous.” Then Dr. Susan Waserman says dryly: “These children have been raised to avoid peanut at all costs. And sometimes we’ve made them so incredibly vigilant and anxious that even when we try and give it to them as part of a protocol that may be helpful, they’re not buying. They’re very fearful, and some of them do think that they may die as a result of this.”
While I like Dr. Waserman personally and respect her work, she doesn’t put into context sufficiently that the children’s and parents’ avoidance measures are 100% justified in the outside world to stay reaction free, but their fear may be misplaced in a hospital setting where a child is getting 1/300th of a peanut at a time with an IV in his or her arm and a crash cart nearby. Instead, she sounds blameful and critical.
Dr. David Suzuki clearly states (almost as a disclaimer) that: These desensitization programs don’t claim to completely cure children of their food allergies: They simply reduce the risk of a major reaction. Finding a more permanent fix means learning why there’s been such an increase in food allergies.
Why then is this episode called The Allergy Fix? I also saw a newspaper headline regarding the show which read “Is There A Fix For Your Child’s Peanut Allergy?”Desensitization is an Allergy Band-Aid, not an Allergy Fix. Did the producers realize this when they included a Band-Aid in the above logo for the show?
Band-Aid [band-eyd]
1. Trademark. a brand of adhesive bandage with a gauze pad in the center, used to cover minor abrasions and cuts.
noun
2. ( often lowercase ) Informal. a makeshift, limited, or temporary aid or solution that does not satisfy the basic or long-range need: The proposed reform isn’t thorough enough to be more than just a band-aid.
adjective
3. ( often lowercase ) Informal. serving as a makeshift, limited, or temporary aid or solution: band-aid measures to solve a complex problem.
Source: http://dictionary.reference.com/browse/bandaid Accessed 16 March 2014.
Then follows an interesting discussion of possible causes of allergies, specifically:
Pollution;
the hygiene hypothesis versus the farming effect of living with animals, plant material, and the protective factor of unpasturized milk; and
the “old friends” hypothesis linking our gut microbiome and antibiotic use not only to food allergies but to huge increases in MS, IBS, type 1 diabetes, and asthma.
Dr. David Suzuki says “and most of the time, asthma is a kind of allergic reaction.” I’m very pleased this connection was made, since epinephrine is the treatment of choice when one’s asthma inhaler does not provide relief. Also of note was the short list of seven bacteria that have been identified, the die off of which may be associated with increased or decreased levels of asthma.
Again, the music became ominous as the screen shot switched to parasitic worms. Why was the tone happy when discussing gut microbiome bacteria and the fecal material researchers are sampling from dirty diapers? Bacteria kill people constantly, but hookworms are benign.
In my humble opinion, hookworm therapy is the second most promising treatment and potential cure for allergies, and I cannot understand the derisive tone the show sets about it. It’s a tremendous shame there is no mention at all in the show of Dr. Li’s Food Allergy Herbal Formula 2 (FAHF-2), the number one most promising cure for food allergies. It’s cutting edge, so why on Earth was it not mentioned?
Henry Ehrlich explained the difference between FAHF-2 therapy (Traditional Chinese Medicine or TCM) and desensitization (Oral Immune Therapy or OIT) in his wonderful keynote address at the 2013 Food Allergy Blogger Conference in Las Vegas, Nevada:
At this point, I want to clarify the distinctions between OIT [Oral Immune Therapy also known as desensitization] and what Dr. Li does. The OIT case has been discussed more publicly without always being fully understood, and I want to make sure that perception of the TCM [Traditional Chinese Medicine] approach isn’t filtered through the OIT lens.
Without promising anything, the differences coalesce around two words. The first, for OIT, is “desensitization.” The second, for TCM, is “cure.”
As Dr. Li puts it, “OIT doesn’t fundamentally alter the immune system. The Th2 cells that regulate production of IgE antibodies may be stimulated to produce it until they are worn out, but new ones are created all the time. Without new allergen exposure to exhaust their IgE output in early stages, they may regain their strength.” Allergy shots produce long-term protection. Insect venom needs regular boosting. We don’t really know where OIT will fall on that scale.
The idea of a cure is based on modulating the immune system. Inducing the helper cells to do the things they are supposed to do, but at the right time and in the right proportion. IgE is the least abundant immunoglobulin, but in very allergic people it is 10 to 100 times normal because of prolific Th2 cells. As Dr. Li puts it, “We want to turn bad boys into good boys.” While, I must add, at the same time not turning good girls into bad ones, which would be the case if Th1 were ramped up.
* Henry Ehrlich is the author of Food Allergies:: Traditional Chinese Medicine, Western Science, and the Search for a Cure which explains the science behind Dr. Li’s research.
The documentary continues and at 3 mg of peanut (3/300th of a peanut) William has an allergic reaction. Suddenly he’s sleepy, spaced out, has choking cough, a weird feeling on his tongue, stomach ache, slurred speech, and flushed cheeks. Says Dr. Waserman, “Once they start to react they become very quiet and the kids that were initially speaking to us and being very sociable become a little bit more clingy and quiet, and then they develop some of the more typical signs [of a reaction].”
William’s mom says he really didn’t want the EpiPen administered and started to get very upset about what was going to happen. Epinephrine was given to William by IV, which is strange, since normally it’s given in the muscle of the thigh for anaphylaxis. I was relieved to see him get epinephrine as it’s an important teaching point, and I suspect that 95% of parents would not have given epinephrine with those mild symptoms alone, and mistakes like that cost lives. If you don’t know exactly when to give epinephrine and the symptoms to watch for, you can learn the correct protocol from this free course.
Now, “much to his parents’ relief”, William has qualified for Dr. Waserman’s peanut desensitization study. She was looking for anaphylactics, and William’s reaction confirms that he is anaphylactic to peanuts. Says Dr. Waserman: “You’re done for today. Good job. You’re going to get to spend some time with us, all right.” William nods, looking extremely concerned, fearful, sad, and depleted. I suspect he’s wondering if making it into the study is really a good thing, and also wondering why his parents and the doctor approve of it so much.
Another child, Avi Siegel, is profiled who has already “achieved William’s goal”. Why is the word “achieved” used, and is this William’s goal, or his parents’? Says Dr. David Suzuki: [Abi is] one of the first people in Canada to be desensitized to peanuts, eating 5 peanuts per day to keep up his desensitization. Dr. Sussman ran that trial out of his Toronto office. He felt the science was at the point where the risk was “minimal”.
Unfortunately, most people will miss Dr. Sussman’s statement that his office is set up like an emergency department, that Abi’s desensitization was part of a research study that is a bit risky, and you [the Allergist] have to know what you’re doing. Dr. Sussman also states that the goal of desensitization is to have “the [patient's] safety increase”.
Again, desensitization therapy is not a fix or a cure: It just may help raise the dose required to cause a reaction, and every allergy is potentially anaphylactic and may be life-threatening if the allergic emergency is mishandled. Dr. David Suzuki breezes along to say that for the time being, as long as Abi keeps taking his dose of 5 peanuts a day, he “should be out of danger from anaphylaxis“. This is a very dangerous statement. I submit that Dr. Suzuki should have more correctly stated that “Abi still has a food allergy, and all food allergies are potentially anaphylactic, but he should be out of danger from anaphylaxis from accidental ingestion of traces of peanut, as they would be very unlikely to add up to 5 peanuts a day, the dose beyond which Abi’s life would be in danger just as before his desensitization.”
This portrayal of desensitization has me very concerned and leaves me thinking that desensitization treatment has a PR firm that is misleading the general public as well as potential desensitization candidates. In my humble opinion, due to the portrayal of desensitization in the press, desensitization treatment may provide a false sense of security. If a patient is eating trace amounts of his or her allergen all day instead of avoiding exposure, there’s no way to tell when they get to their limit of 150 mg, or whatever their limit may be on that day due to other factors like asthma exacerbation. When you do cross that threshold, you will react and like any allergic reaction, it may be life threatening, just as before.
In fact, it has been found that the risk of reactions of all types, including severe anaphylaxis, is far higher in patients being treated with OIT than in patients who practice avoidance.* Dr. Robert A. Wood and Dr. Hugh Sampson further state that the greatest risks of OIT may not be apparent until after treatment, when the patients may be at true risk of anaphylaxis but living with a false sense of security and potentially without epinephrine. These concerns are further magnified by studies demonstrating that protection after OIT may be lost with even brief periods of avoidance [of one's allergen].
* Source: http://www.jaci-inpractice.org/article/S2213-2198(13)00457-1/fulltext Accessed 27 March 2014
Other dangerous content in the documentary was showing milk allergic Elizabeth drinking milk at home with the narrative that “after an upsetting first attempt” she was “bravely gave milk another try”. After a commercial break, Elizabeth is shown in proper sequence arriving at Dr. Carr’s office to try desensitization again. The drinking milk segment is shown again, this time following the visit to Dr. Carr’s office. It should never have been previewed before that visit. Again, the producer has failed to emphasize that desensitization should only be done in a doctor’s office with emergency room equipment, or more properly, in a hospital emergency department.
Says Elizabeth’s mom after watching Elizabeth drink 46 ml of milk, “considering how sensitive she was before, it’s quite a relief that she has gone this far”. Says Dr. Suzuki: But there’s no guarantee even this is a permanent fix. In recent milk trial, 75% of the graduates found that symptoms of their milk allergy returned after they stopped taking their daily doses. In other words, true tolerance of milk was not achieved. Elizabeth’s immune system persists in believing that milk proteins entering her body are a threat and then Dr. Suzuki changes the subject and says but many people show up in Dr. Carr’s office believing they’re allergic to a food when in fact they have a food intolerance. This transition from allergy to intolerance was far too subtle and really was unnecessary content. I feel it was irresponsible to then show Dr. Carr stating that the best test for allergy is to eat the food (not a skin test or blood test), and that if you have no symptoms, you’re not allergic as no mention was made that this should only occur in a properly equipped medical office or a hospital bed as part of a properly supervised oral food challenge.
Why would the producers state categorically in their script that desensitization is more attractive than reworming, and “let’s hope that reworming campaigns aren’t the solution to the allergy epidemic”? Receiving a safe but therapeutic one time dose of 10 to 25 hookworm lavae on a patch that permeates the skin is completely harmless (the treatment is based on the fact that the parasite has to moderate the immune response to survive), and it causes no more harm than some itching.
In contrast, I read first person accounts of symptoms that desensitization participants experience, and the symptoms are serious and include abdominal paid and systemic reactions, which cause a higher drop out rate. Further, do I really want my child taking a daily does of antihistamine and two doses of antacids every day as in Dr. Waserman’s study or some other an experimental drug? Is it really worth it, to be able to drink 46 ml of milk without a reaction in the hope that you’ll get to 200 ml, beyond which you will then have a potentially life threatening reaction just as before?
Instead of making any mention of this in the episode, William is shown happily having an up-dose to 2 mg of peanut. He has proceeded through his first 2 weeks at 1 mg with only flushed cheeks, and he is taking 2 doses of antihistamine and an antacid every day as pre-medications to see if they reduce the abdominal pain that stops some children from tolerating the desensitization process.
Dr. Suzuki says that a year of peanut desensitizing hasn’t been easy on William’s parents. His mother says that it was very difficult to get him to take his medicine, and there were a few times she thought of throwing in the towel, but she kept thinking of the reason they’re doing the desensitization. Dr. Suzuki excitedly states “And now, William is eating whole peanuts”. Did you notice he does so with an EpiPen on the counter? That somber fact was not mentioned, nor is the fact that even once one is desensitized, you should still carry two doses of epinephrine at all times, the same as a person who has not received the protocol. William is shown walking to a birthday party with his mother, who says that “now we’re a little more relaxed going somewhere for dinner or if someone makes a birthday cake, I’m a little bit more relaxed about the whole thing.”
Says Dr. Suzuki: The big question – Will the allergy return if the child stops taking the daily dose? Dr. Waserman says: What isn’t yet certain is whether this type of procedure is a cure, can these children ever stop the protocol, stop taking daily peanut and yet lose the allergy over time. Dr. Waserman says clearly in lectures that it’s not a cure. A very rightfully confused sounding William says he can eat 4 peanuts, he’s not sure, but not a peanut covered cake, and that he still treats it like a peanut allergy. His mom reports that she feels so much less stress in their life and that she never realized how much [peanut allergy] impacted their life as a family. Very happy music begins, and Dr. Suzuki makes the trivial statement that incredibly after all his complaining, William now likes peanuts (more happy chimes follow).
I often wonder why desensitization gets so much press, and my guess is that there’s money in establishing a protocol that makes food allergies chronic instead of acute. I can imagine allergic individuals walking around with devices to measure the amount of peanut antibody in their blood to see if they’ve reached their threshold of peanut per 100 grams, like diabetics measuring their blood sugar. That’s where the money is, come to think of it.