One parent’s response after being indoctrinated into our OIT Community for a few years:Like most food allergy parents, once I heard of OIT I immediately wanted my local allergist to offer it. What a great idea! We would be his first patient, and a very successful one at that (of course). I hoped that sharing medical journal articles and the list of board-certified allergists would help convince him. Nope. Next, I hoped that reports of my child’s success progressing through OIT would be the proof that would launch him into offering oral immunotherapy. Nope. He attended a conference where my OIT allergist spoke. Nope.
I have come to realize that my local allergist will never treat patients with OIT, and I really shouldn’t want or expect him to. Let me explain.
Those of us in the OIT community who have completed treatment and living freely get frustrated that OIT has stayed “in studies” for many, many years, and has not been adopted more widely by the allergist community. Here are a few reasons why:
1) Lack of funding for large-scale studies. When you read the clinical studies and reports from the last 7 or 8 years, they almost all end the same way: larger studies are needed. Yet these larger studies never happened, because of the expense and the politics involved. Yes, there are politics in science! There is fierce competition to get studies funded by institutes and organizations like FARE. The only large-scale studies that are being done are investments by venture capitalists and private investors, putting in hundreds of millions of dollars so they can sell a food allergy treatment product for billions.
2) Conflicts of Interest. When you follow the money trail and the OIT research trail, you start to see the patterns in why OIT, despite so much success, has stalled in gaining acceptance. Many of the original scientists and doctors who pioneered OIT hold patents and have jobs with pharmaceutical companies. Some are OIT-related, and others are competing products like the Viaskin patch, Chinese herbs, and the Aimmune product—all billion dollars in sales, despite not being nearly as effective. You can see who has been appointed to positions within these companies and how their sudden “shift” from being pro-OIT is accounted for. There is no money to be made when our Planters peanuts cost $50/year versus FARE’s/Aimmune’s peanut flour at $5500 per year.
3) Lack of leadership among the researchers. Lots of little worldwide studies, different protocols, lots of different questions…and an appalling lack of leadership and clear direction. “How do we safely get this treatment out to help families” should have been the focus of the allergist community. There was never any focus, nor a plan. Instead they have sat back and let “someone else” figure it out. While our children wait.
4) Kids getting sick in the early studies. Researchers, not knowing much about OIT, made kids sick in the early days of OIT research. They didn’t know all our little tricks we have in private practice OIT: how we eat before dosing, limit raising heart rate after dosing, downdose when sick…and so many others. We don’t updose if there are symptoms in the “real world”; in a study where they had to reach X amount by Week Y they would push a family onward despite vomiting or stomach pain. These stories created fear among the allergist community and among the food allergy parents on Facebook.
While these 4 reasons have created a landscape where OIT has stalled since 2009, I think there is a bigger and more fundamental reason why we haven’t seen OIT expand more quickly:
5) Most allergists don’t want to offer OIT as a treatment. If OIT were “approved”, doctors know there would be great demand to “fix” the allergy—and probably by many patients who know nothing about how complicated a treatment it is. The general public will think it is as simple as “popping a pill” or “using a nicotine patch” and it is far from that.
Dr. Bajowala explains it this way, “I believe that OIT can be performed safely, but only under the supervision of a Board-Certified Allergist & Immunologist who has made a commitment to tailoring his/her practice to the treatment of food allergy. OIT is a labor-intensive procedure that requires a near-obsessive amount of attention to detail in order to minimize the risk of errors. So, to a certain extent, I do agree with those who claim that OIT is “not ready for prime time”. Not every bread and butter allergy office is set up to properly provide the level of personalized attention that OIT requires.”
It takes a special allergist to CRAFT their way into OIT. To modify their practice in many different ways to take the care and do the preparation and training for themselves and their staff. OIT is NOT for a 9-5 allergist. The OIT allergists are “different”. They have a PASSION for freeing food allergy families: first through strategic use of food challenges to root out false positives and outgrown allergies. Some doctors have completed more than 6,000 food challenges with the goal of setting patients free from an allergy that isn’t there. If an allergy is “the real deal” their attention turns to treating the allergy to return the patient to a more normal life. Many OIT allergists believe it is the most rewarding thing they have done in their professional careers.
OIT really is a sub-specialty within allergy /immunology, and the OIT doctors often have a research background or a research branch of their practice. They have educated themselves on all information on both food allergies and what has been published about OIT (over 125 studies to date; going back to 1908!). They travel to train and mentor each other. They share protocols and new findings with each other.
You’ll notice that most of the OIT providers are NOT in major metro areas, and most are not part of hospitals/major networks. They run their own practices and think for themselves. They aren’t bothered by insults from the researchers slamming “retail OIT” like they are running Botox mills.
Many allergists don’t want to offer OIT, and we hope that they don’t feel pressured to do it once the FARE-funded Aimmune product is FDA-approved and can be a profit center. Here’s what one board-certified allergist had to say about why he will not be an OIT allergist:
Veteran Allergists and New Treatments
An excerpt of a public blog post by Dr. Paul Ehrlich, March 11, 2015:
“It is not for me, however. Even if I overcame my reservations about the state of the research and bought into one of the protocols being used in private practice, I believe this will eventually involve a sub-specialty of allergy and immunology, as indeed, is the de facto case already.
Deliberate daily exposure to a food allergen requires round-the-clock availability that I am not prepared to give. I am already essentially on call for all my patients, especially those with bad asthma, but because they are compliant using a familiar palette of treatments, the emergencies are few and far between. Would this be the case if I suddenly added OIT to my services? I would have to learn the protocols and be prepared to accept them as gospel. My practice colleagues would have to learn them, because no one can be on call all the time. This new treatment would come at the expense of what we already do and do well, and shortchange our patients.”
OIT is a sub-specialty that requires special doctoring skills and knowledge, not just how to read and follow a protocol. “Customized OIT” in private practice has had higher success rates than “Standardized OIT” in rigid studies. An OIT doctor carefully considers each patient, and treatment is individualized to them. Dosing amounts and updose intervals can be changed and adjusted, versus a one-size-fits-all staircase approach every 2 weeks. Protocols can be adapted to a rapid once-a-week updose schedule, or a more conservative monthly schedule for those who travel or need longer hold intervals.
Patients are carefully monitored in office, and are able to be in contact with their OIT doctor 24/7 via text, email and/or phone. Doctors are to be called with any strange or worrisome symptoms, or an illness that requires a dose adjustment. The level of involvement of an OIT doctor with a patient exceeds anything a “typical” allergist has prepared for, and quite a bit more than most are willing to offer. The OIT allergists will tell you it is worth it; they WANT to take on this extra workload, this extra commitment, this extra risk, because of the sheer JOY of releasing kids to a fuller, more empowered and freer life. And that is all the reward they need.
The standardized Aimmune “OIT in a KIT” product WILL be FDA-approved, and anyone will be able to prescribe it. We see that as a recipe for disaster. Mainstreaming OIT, where a written instruction manual details the steps, and the doses are pre-set, implies an “ease” of delivery that we know is far from reality. No one has died in OIT, because of the extreme care and personalized treatment this small group of dedicated doctors gives. Adding OIT to a bustling, busy allergy office might lead to unintentional carelessness and severe consequences. That kit’s first dose is 250 TIMES GREATER than the dose most of our OIT allergists start with.
Having ENTs, pediatricians, family doctors, nurse practitioners, and chiropractors with no training in allergy / immunology jump into the newly developed food allergy treatment “business” has a large potential for mistakes, and with food allergies, mistakes can mean anaphylaxis and death.
Every week on the Facebook food allergy groups we see the results of indifferent, uneducated, and inexperienced allergists giving poor service and bad/incorrect/misleading advice to parents. Many won’t explain results or answer questions, and it takes the generosity of other parents to explain basic food allergy concepts to these parents. Are THESE the doctors we want feeding children their deadly allergens? Will they patiently answer all questions and train parents on every precaution? Will they be available to all their patients 24/7 via text, email and phone? Would a call even get past the front desk or be sent to voicemail with a 24-hour response promise? Would they personally oversee the dosing to ensure the dose a child receives in office and to take home are the correct dosage? Will they have a long upfront consultation to ensure OIT is the right treatment and discuss treatment goals and outcomes?
Do you understand better why OIT isn’t offered broadly? Those of us in the OIT community want it to be more available, but not at the risk of harming a child. Most allergists won’t willingly do the careful baby-sitting that OIT requires. It’s not like hiring a nurse to give allergy shots.
The national need for treatment option is for something that any allergist can easily do with little or no training—like the Viaskin patch that requires minimal skills. A one-size-fits-all treatment—where years and years are spent, and the results are much, much lower than OIT, and they do not get true freedom at the end. But it requires little-to-no skill so is a much better “Standardized” approach than OIT.
We celebrate the dedicated physicians who have trained to be able to safely offer oral immunotherapy to their patients. As one parent said:
Private Practice OIT Allergists are daring to treat their food allergy patients instead of simply collecting fees, prescribing epipens, and instructing them to avoid their allergens.
Yes, this means you might have to travel for the expertise and skill of an OIT allergist; the same way you would travel to the best specialist you could find if your child had a life-threatening disease. There IS a difference between the top tier of doctors and the lower tier. I am no longer bothered that my local allergist doesn’t offer OIT. I am content to have him keep prescribing Epi Pens and doing allergy testing and giving allergy shots. But my child deserved better, and we ended up with a brilliant and highly credentialed allergist who is committed to changing lives for the better.
(Various authors contributed to this article. You can find bits and pieces in our Facebook support groups.)
Updated 10.3.18
