How many people could have received OIT treatment during the last decade?
Private Practice OIT was established in 2010. We now have several hundred allergists in our network offering desensitization treatment for food allergies despite the fact that their professional medical organizations have withheld the information that OIT works and offer them the continuing education to get started.
Currently, we have over 70,000 members in our original OIT support group platforms who are either in, or graduated, or just getting started with Private Practice OIT. We have approximately 1,200 members who are in clinical studies with the peanut pill product because they do not have a private allergist in their area who offers OIT.
When I asked our private OIT allergist, who worked with Dr. Burks setting up and running part of the OIT study at Duke, why the researchers are keeping this treatment from the allergists who could be saving lives, he replied, “If people could receive treatment in their own neighborhood, who would join their studies?” He also said, “Follow the money.”
How much does peanut flour cost? How much do the organic peanuts cost that we buy now that our son is in maintenance? My husband, “Oh, they’re not cheap. About $6/$7 for a container. But they last a few months. I really can’t remember when I bought them last.”
Our son is in year 9 of OIT with a Private Practice OIT Allergist (tm.) The term has to be trademarked to differentiate our recruited and organized allergists from all the other medical workers, anyone with a prescription pad, who will be able to prescribe the manufacturered pill form of the peanut doses without necessarily knowing what to do with them or what to expect when things go wrong.
And now that we’ve been through OIT and I’ve spent the last decade of my life devoted to helping doctors and families learn about OIT and receive treatment, there is absolutely no way I would let a doctor or anyone feed my child a pill with variable ingredients in it. That last ambulance ride was one too many. The provider will feel horrible if something “happens” and he dies, but I would lose my child. The world would lose him.
Our children are not disposable. They deserve individualized treatment when the side effects and consequences of anaphylactic reactions are potentially fatal. And for the 18 million people in the United States alone who are allergic to food, most don’t even know Private Practice OIT has been available since 2007 or so and they have options. They will be so happy that their doctor, chiropractor, nurse practitioners, etc… is offering a solution and it’s covered by insurance– SCORE!
OIT itself has a number of built in miracles, but “it’s not nice to fool Mother Nature” and I’m afraid in the wrong, inexperienced hands, we will see tragic results.
OIT does need to become the standard of care for food allergies, but only in the hands of board certified allergists-immunologists who are qualified and want to offer this specialized treatment.
We have not had 1 issue during OIT because our doctor considered our son’s medical history and potential to react when given minute amounts of peanut, He had a 2 minute window to anaphylaxis. Our OIT Allergist individualized a treatment protocol to gradually build up an amount of peanut his body could accept without reacting. Dose amounts were not increased until he could consume that amount safely, without side effects, for two weeks. You simply cannot purchase the type of doctoring required for OIT, their experience, knowledge, ability to manipulate the nuances of treatment during illness or other medical situations like asthma, in a pill pack. OIT doesn’t work that way. Some will manage through perhaps, but at what cost? I would pay anything for my child not to ever have a severe reaction again. That epipen does not always resolve the reaction. We haven’t even taken a 24 peanut food challenge because he has eaten approximately 8 peanuts/day for the last 9 years without issue–except when he’s sick or wants to skip his dose while traveling or holidays. What about the patients who stop at 3 or 4 peanuts? Or those who stop increasing at 1 peanut, which is what the highest dose of the boxed peanut pill stops at according to their website. Are they patients able to eat an entire Snickers or peanut butter sandwich? Is any of this spelled out on the back of the box of peanut pills? Is there an instruction booklet in the box? Tips and suggestions? Or will the prescriptions writers just wing it?
I am scared for the peanut pill recipients. Most families are afraid that in order for their medical providers to be paid, they will have no choice but to force the peanut pills on them instead of measuring doses using actual food that is already approved by the FDA.
When, in time, have researchers found an almost near-perfect treatment for a life threatening illness? Why keep this a secret? Why not educate the physicians whose job it is to offer this service to their patients? It’s not safety–they know it works. They proved it and published an article in the medical journal. It’s that they couldn’t think of a way to make enough money at it. They kept telling the allergists and the public that OIT wasn’t “ready for prime time” while they sunk billions of dollars into manufacturing a “unique” recipe to fast-track through the FDA, taking advantage of the families who sought out OIT information but could not travel to a Private Practice OIT location.
The thing most people don’t know, is that these are not random physicians who have never met. There are less than 5,000 board certified allergists in the United States. They know each other. A few of the doctors on our List have taught many of them in medical school and call them by first name. Most allergists belong to the AAAAI, or the ACAAI, or both. Some doctors pay close to $20,000 annually to belong to all of these professional medical organization, yet, they’ve taught them nothing about OIT. They have not held training seminars, haven’t organized the allergists into a referral list, carefully vetting each one, connecting them with their colleagues who have been offering OIT for years, or even told them of the success our Private Practice OIT Allergists have had in the last decade. They wait for the researchers who job hop, or share dual positions with the manufacturers of the food allergy prescription products to tell them money is in sight– go ahead and let everyone know. We can get paid.
I haven’t made $1 helping our board certified allergists and food allergy families find each other for OIT treatment. My son was finished with treatment in 2011. I could have lived life the way we planned before he became allergic to peanuts. But I stayed online to do the jobs of those who actually have the professional responsibility to help the food allergy community and the allergists. If I had a degree in business or something more useful, perhaps we could have reached more people by now. Perhaps we could have saved more people from fatal reactions. Perhaps we could have a paid staff, a marketing department, everything we need to do the job of the professional medical and food allergy organizations because they aren’t helping the way they should. And they get paid for nothing else.
As I said over a decade ago in an email to the now absorbed board of the Food Allergy Initiative, “Take the initiative.” So far, they’ve only taken the initiative to line their own pockets.
See: The U.S. Health-Care System Found a Way to Make Peanuts Cost $4,200