Some of the doctors on our List have been trained by each other. Some have created their own protocol after years of research interest, experience, and listening to presentations given at allergy conferences. They have studied the methods of other doctors on our List and well known research study locations, such as Duke (my favorite).
Why it matters?
Some studies were simply trying to find out if OIT could be “SAFE AND EFFECTIVE.” Dr. Burks proved that in his cohort study.
Other study locations wanted to see how many allergens they could combine in a protocol and still be safe. Hence, mOIT (multiple) OIT.
Other studies wanted to see if Xolair helped with the OIT process– which had already been proven “SAFE AND EFFECTIVE.”
Some studies wanted to see if probiotics helped with the OIT process– which had already been proven “SAFE AND EFFECTIVE.”
Some researchers learned how Private Practice OIT allergists use compounding pharmacists to measure doses and place peanut flour in capsules making it easier for patients to transport home. Perhaps this is what gave them the idea behind Aimmune? Nevertheless, those studies want to see if a standardized measurement in a capsule is “good enough” for the masses. Bonus–they make a lot of money. Or do they? Compound Issue– 1. It’s not “tapered” medical treatment so we hear about the reactions and help participants find private OIT allergists, and 2. They will have to sell SO MUCH PRODUCT to at least break even with their $80 million investment. Which, to me, sounds a little adventurous considering there are “only” 17 million food allergic people in the United States. And we’re talking peanuts, eggs, milk– and not certified organic.
Then there are the patch studies, which theoretically, if compared to the nicotine and birth control patches, should work right? Either way about it, in order to eat a peanut or any other food that can cause a life threatening reaction, without HAVING a reaction, you are going to have to BE ABLE to orally consume the ingredient safely. If OIT research has taught us anything, it is that oral consumption must take place routinely. So, if and when the patch works to desensitize a patient fully VIA SKIN, are the users forced to wear patches on their bodies indefinitely? Thankfully, we are strictly OIT and only give this product consideration if the OIT patient has tried all other options in oral immunotherapy treatment and/or has been diagnosed with an additional medical condition.
From CNN Money: “The market for food allergy drugs could be extremely lucrative, worth nearly $21 billion a year, according to estimates in a U.S. research paper from 2013.”
What’s the significance of clinical studies for food allergy treatment to a private practice allergist?
Private allergists certainly learn from reviewing publications and communicating with researchers. But while researchers are collecting data– ideas of what they want to prove or disprove– private physicians are actually DOING the field work. They don’t get the luxury of “selecting” patients based on an IDEA or FINANCIAL INCENTIVE to make sure a particular product will work.
The people who are employed by the study locations possess various educational and work experiences. Some are trained medical workers, others are business administrators–comparable to employees in a private medical office but usually research facilities have enormous overhead expenses, liability, policies, etc… an overseeing review board.
In the case of OIT, a medical worker who is employed by a large, name brand research/ medical center, does not become automatically qualified to teach and/or administer PRIVATE PRACTICE oral immunotherapy. While we appreciate the “apprentice” whose ambition is to “turn pro,” what the supportive medical team learns in a study setting does not prepare them, suddenly make them all-knowing enough, to train board certified allergists in the
ARTS and SCIENCES of PRIVATE PRACTICE OIT.
We see this nearly everyday now with feedback from members who are under the WRONG impression that the “Directors” of their private practice (little p’s) OIT offices are physicians– no. Perhaps they’d LIKE to be? Perhaps they give the impression they ARE– but they are not. And you’d think that a board certified allergist would not hire “lower level medical workers” and rely on their isolated clinical trial experience to “TRAIN” them for what they are about to receive in the vast private patient sector.
For the private allergist, no review board is screening these patients to make sure they match those picture perfect candidate qualifications. Patients are coming to them right off the streets. Private allergists have to consider history, other medical conditions, and risks–not just medical–but maturity of the child/parent, commitment to the program, responsibility of dosing, travel, etc… Private patients do not FIT into a study-model so how is the study worker supposed to treat them?
So, why aren’t your board certified allergists, who have employed name brand study employees to run their OIT programs, on our List?
A few were. And they were removed because members complained and brought our attention to the fact that the allergists were not in charge of their own program. They were not trained by qualified, experienced OIT allergists. They didn’t spend 5 years researching the specifics of oral immunotherapy and reach out to those who were offering it in their own practices. I’m sure they thought they were aligning themselves with a credible, name brand medical source–but to what REAL benefit?
Moreover, how can the “supervising physician” be the student at the same time? This clashes with everything I’ve learned about OIT and medicine in the last decade. Everything I’ve been FORCED to learn about medicine out of the necessity of saving my own child because the studies were studying while the private practice allergists were treating–and there still aren’t enough of them because they are told BY RESEARCHERS that OIT isn’t ready yet. Looping conflicts when all I wanted to do is make an appointment.
Private practice allergists and children, like my son, did not have the luxury of waiting for whatever the researchers have in store for us– which I’m guessing will be a little too little too late.
While we respect ongoing medical research, there comes a time when we must stop obsessing on particulars and serve the people we are trying to help.
I feel for the “lower level study medical workers” who are out there trying to help and be of service to the allergic community, but for any allergist who wants to provide quality care to their patients, think about it. Did you sign up for PA/NP school or medical school? Did they have PAs/NPs teaching your courses? I don’t know? Maybe they did? I know nurses teach nurses. Do nurses teach M.D.s?
As a parent, I believe we want the human being in charge of our child’s food allergy treatment to be “the best of the best.” Not just a name brand associate. But a physician who has been and continues to be educated by the most experienced, RELEVANT, perhaps published, ALLERGISTS and IMMUNOLOGISTS who specializes in OIT.
Even if an allergist has no OIT experience yet, and unites with an experienced OIT allergists to learn, perhaps help with local dosing, etc… I would trust them more than a non-physician who worked in a study– following instructions– or a physician trained by a non-physician who worked in a study– following instructions. That medical degree is not just a framed piece of paper hanging on the wall. It makes all the difference in the world when trying to save a life. At least to me. And in some countries, even a pediatrician who seeks out specialized OIT education from an allergist, is still higher on the education chain than advanced nurses or PAs. That’s medicine.
It’s a free world. You are free to chose whomever you want to treat your self or your child. Our LIST is for board certified allergists only, with an international exception (Hungary).
Our OIT offices could not treat as many patients as they do, and we have phenomenal NPs, PAs, nurses, and medical assistants doing ground breaking work and contributing to medical science every day. They would not “presume to equate their educational and work experience” with that of a board certified allergist.
If PAs/NPs/nurses/medical assistants fly to an office and set up their dosing stations, outstanding. If they are hired specifically and solely to measure and mix doses, terrific. Though a large percentage of our doctors still insist on measuring and mixing their own doses. They are not replacing the role or duties of the allergist. The doctor to doctor relationship is just one thing that makes our List of OIT specialists unique.
As time goes on, we will see doctor offices, stand alone clinics, etc… offering a form of OIT with conventional dosing using actual food, manufactured products, prescription products, accessory drugs, etc… The most important thing you can do for successful OIT treatment, is question the specific training of your allergist and their ROLE in your treatment. Are they “signing you up” and never again available for questions, phone calls, or visits? Who will respond to after hour issues? What can you expect of the medical support team? Will there always be a physician in the building when you are there for increases? Why or why not?
And for the sake of time and efficiency, I ask you write these questions out and present them to the doctor so you’re not holding them hostage, so to speak. You might call ahead and ask to email your questions.
We are working on certifications and ways we can differentiate the training and experience of our OIT providers. But for now, you have to do the field work. Before dosing begins and you wonder why the process is so different from what you read in our groups. Find out who is in charge. Then make the best decision you can for your self or family.
Even being a board certified allergist does not necessarily equip a doctor with the same foundation and methods of desensitization similar to those used by the doctors on our List. I have a list of 50 allergists who either need training or have started to treat “one patient for now” but want to make sure they know what to expect as they take on more patients.
One doctor referred to me as “The Great Connector.” I love that!
But you have to learn from my example and connect your own dots too.
— USE OUR SEARCH FEATURE PLEASE.
We have spent 7 years or more stock piling information for you.
— USE OUR WEBSITE.
Gail and the Admins spent a year transferring and writing explanations for you.
I am using nonprofit donations to create more features, update, and keep it all running–forms to funnel in more doctors and pin our most valuable information to a static source.
I cannot calculate how many hours I will be on the phone with this next phase of our soon to be providers. I have time and tech challenges of my own. School is starting for my children.
We homeschool–which we love! My husband wants to go on vacation. (AH!) Our guinea pigs deserve clean cages every week. My children help to clean our house as much as possible. We all have something.
Without our Admins, I cannot imagine how our part of OIT would really work? How would we flow? THANK YOU EVERY DAY ADMIN TEAM!!! And members who contribute your time, answers, and consideration.
Cause right now, we are all we have— no joke.