|
Location | | Type of Program | | Insurance Covers? |
Duke | Study | n/a |
Dr. Wasserman Dallas | Treatment | Yes |
Dr. Baker Portland, OR | Treatment | ?? |
UVA | Study | n/a |
New England | Treatment | No? |
Little Rock | Study | n/a |
Stanford | Study | n/a |
Dr. Mary (Minnesota? Wisconsin?) | Treatment | ?? |
Stanford Multi or Single OIT
5-55 years old
Blood Specific IgE > 7
OR
Skin Test>6mm+
DBPCFC (+)
New England Food Allergy Treatment Center
I believe that one of our regular members has begun treatment with them, or is about to. They are in West Hartford, CT.
Further north, Portland is also a very nice place to live. It lacks just one thing that most similarly-sized cities have, however-- major league sports. (Well, it does have basketball.) The arts opportunities there are somewhat reduced relative to some places, as well. But the quality of life there is excellent. Outdoor activities (beach, forest, mountain, river, etc) are amazingly affordable and accessible considering that Portland is a major metro area. There are four distinct seasons, winters are mild, summers are equally mild, and there is NO ragweed. None. But you do have to enjoy molds, and grass/tree pollen... and what they say about the rain? All true, I fear. :thumbsup: Anywhere on the west coast is going to feel shockingly liberal (to the point of leftist, probably) in the cities, and astonishingly conservative (okay, pretty much "red-neck") in the less populous areas.
From a food allergy standpoint, we have Guittard chocolates going for us, but little else, I have to confess. WA state has some good school guidelines, but OR and CA both lag significantly, and both states have budget woes that mean that outside of a few bright spots, K-12 education is NOT very good here anymore. If I were choosing a spot on the west coast, I'd probably pick Vancouver, WA. It's just over the river from Portland, and is more affordable (and has those better WA regulations) and access to all that Portland offers.
yeah, I'm in the same ballpark thought process as cm. If they *did* have anything obtainable, that would pass muster, it would be on the market now, raking in the dollars. It's going to be so "in your face", *IF* it ever happens. In the meantime, which could be a while, don't lose any sleep over it.
Seriously, I don't have a clue, but how did Xolair and it's cousin (I forget the name) do?
My son has been accepted into the UVA program. He's a class 3. And his score recently went up. When we tried to get into a Duke study a few years ago his score was too low (still a class 3--but we know that has nothing to do with risks for anaphylaxis, don't we? His threshold for contact was pretty low).
I'm guessing that you're right-- that not being MFA, not having other markers for severe atopy, etc. probably decreases the chances.
And yes, single allergy, high sensitivity... the improvement in quality of life would be ENORMOUS as a payoff in the here and now.
WRT Xolair - Yes, Tanox came before Xolair and was being trialed as an allergy treatment. Hugh Sampson was in charge of the trial and I was to the "signing my life away paperwork" when they lost the court battle with Xolair.
Prior to approval for asthma, Xolair was not investigated as an allergy treatment because they felt they could get FDA approval much easier as an asthma treatment. As soon as Xolair was approved for asthma (~2004) we started DS on it. Even though he was only 7 (at the time of approval Xolair was for ages 12 and up), he qualified because his asthma was so bad and we were hoping to help his allergies as a side effect of the asthma treatment.
DS was on Xolair for about 5 years - we lost our insurance and were not able to afford the cost of Xolair without it. I was worried that he could have a severe reaction as the Xolair wore off and his system became able to react to the IgE. I was worried that after having those years of freedom he would begin reacting to all his allergens again and we'd have to take everything away from him. I was worried his asthma would come back. He's been off of Xolair about three years now AND HE'S FINE!! He still eats everything he was eating while on Xolair and the only problems he's had are that non-baked milk makes his throat itch and if he eats more than about 2 eggs he gets stomach pain. We still assume he's allergic to peanuts and tree nuts and avoid those and he has some seasonal allergic rhinitis. That's it. No dog reactions. No asthma. No endless ear/sinus/chest infections.
I don't really know how, but I believe the Xolair allowed his immune system to take a break - reset - stop being hypersensitive - something. Maybe the few IgE that got through the Xolair block essentially resulted in desensitization. Who knows :dunno: . I do know that whatever/however it has changed his life.
That's a good point-- with kids that have comorbid atopic conditions (asthma, primarily, since that one is also a killer), gender may ultimately matter more than anyone used to imagine.
Boys tend to 'age out of' asthma in much larger numbers than girls do; being female, statistically, means you are likely to experience a significant worsening of atopic symptoms during adolescence, which is not true for males, who tend to experience the opposite phenomenon.
Asthma alone, on the other hand, seems to get better as airways and lung capacity get greater. Just in general, I mean. So it completely makes sense that non-allergenic asthma would improve during adolescence. It's less clear why allergenic asthma should have such a surprising gender-specific prognosis.
I don't really know how, but I believe the Xolair allowed his immune system to take a break - reset - stop being hypersensitive - something.
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair. So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair. Totally worth it.
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair. So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair. Totally worth it.
if my son outgrew earlier than two years ago, i dont know---he was on singulair and allegra without question until the new ped stopped them.
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair. So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair. Totally worth it.
if my son outgrew earlier than two years ago, i dont know---he was on singulair and allegra without question until the new ped stopped them.
It sounds as if the singulair and allegra kept your DS's asthma well under control.
FDA is investigating approximately 30 reports of cancer in children and young adults. These reports were submitted to FDA’s Adverse Event Reporting System over a ten-year interval, beginning in 1998 after approval of the first TNF blocker, and extending through April 29, 2008. These reports described cancer occurring in children and young adults who began taking TNF blockers (along with other immuno-suppressive medicines such as methotrexate, azathioprine or 6-mercaptopurine), when they were ages 18 or less, to treat Juvenile Idiopathic Arthritis (JIA), Crohn’s disease or other diseases. Approximately half the cancers were lymphomas and included both Hodgkin’s and non-Hodgkin’s lymphoma. Lymphoma is a cancer of the cells in the immune system. Lymphoma is not a recognized complication of JIA or of Crohn’s disease. Other cancers reported included leukemia, melanoma, and solid organ cancers. While cancers are known to occur in children and young adults, the reports of these events in children and young adults receiving TNF blockers are of concern and deserve further investigation. Long-term studies are necessary to provide definitive answers about whether TNF blockers increase the occurrence of cancers in children because cancers may take a long time to develop and may not be detected in short-term studies.
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair. So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair. Totally worth it.
if my son outgrew earlier than two years ago, i dont know---he was on singulair and allegra without question until the new ped stopped them.
It sounds as if the singulair and allegra kept your DS's asthma well under control.
yet major metropolitan children's hospital petitioned us to be part of the Xolair study. Why do you think that was? Was it cherry picking?
If he had been part of the non-placebo group, would you say results related to him might have boosted confidence in the drug?
Or...could it possibly have been the delicious fringe of having a peanut allergy/multiple food allergy, for which the study was not approved?
Neither?
Just sheer ignorance?
I agree, part of DS's improvement today may have happened anyway. However, he went from needing 24 puffs of albuterol a day just to barely come out of the red zone, multiple hospitalizations for status asthmaticus with 3-4 days of oxygen each, prednisone, beyond max doses of maintenance meds, etc. to NO asthma and NO allergies within a three month period long before he hit adolescence. The only explanation is Xolair. So, even if he would have "outgrown" his atopy, he would have suffered for years without the Xolair. Totally worth it.
if my son outgrew earlier than two years ago, i dont know---he was on singulair and allegra without question until the new ped stopped them.
It sounds as if the singulair and allegra kept your DS's asthma well under control.
yet major metropolitan children's hospital petitioned us to be part of the Xolair study. Why do you think that was? Was it cherry picking?
If he had been part of the non-placebo group, would you say results related to him might have boosted confidence in the drug?
Or...could it possibly have been the delicious fringe of having a peanut allergy/multiple food allergy, for which the study was not approved?
Neither?
Just sheer ignorance?
My guess? Because he was relatively stable he qualified for the study. He was bad enough, but not too bad.
Perhaps they offered all their patients the opportunity? We, too, live in an extremely large metropolitan area and are treated at a major children's hospital. When one of our various specialists is involved in a study involving one of our dx'es, we've always been offered the chance to participate. I always assumed everyone was. Many of the studies, we just had to answer questions and the doctor tracked data, so we would often participate. The one study I allowed DS to actively participate in was a Singulair vs. Flovent study. They gave us a palm pilot (this was before the age of smart phones) and we had to track his peak flows several times a day and then download the data once a week or so. FWIW, neither med did much for DS, but Flovent was slightly better. According to our pulmo, Singulair only works for about 30% of patients. For those for whom it works, it's great - everyone else might as well have a placebo.
I think it's important to remember the distinction between a study (research) and a trial. In the studies, they are basically comparing data WRT a pretty broad population where in a trial they're actually testing the effectiveness/safety/etc. of a particular med for a specific diagnosis. A trial will have much more stringent enrollment criteria than a study. In the Xolair study you mention, I'm surprised once you chose not to use the med that they didn't ask you to allow them to track data on your DS as a non-Xolair using asthmatic.
Dr. Peter Starke of the FDA's pulmonary and allergy products division told the meeting that while the drug had met its targets in clinical trials, its effectiveness in children was "invariably small and clinically modest."
The drug's current label for adult use contains a warning that it may cause anaphylaxis -- a severe allergic reaction that can be fatal -- and could also put patients at risk of cancer.
Well, TNF blockade is a completely different drug class than the IgE antibody drugs like Tanox/Xolair:
[url]http://www.nature.com/jidsp/journal/v12/n1/full/5650029a.html[/url]
Different mechanism, I mean.
What I find most appalling-- but highly instructive-- about the story of Embrel is that the drug was brought to market almost entirely EMPIRICALLY.
In a 1967 prospective study, Taylor and Weil tested the effectiveness of the Trendelenburg position in 6 hypotensive patients in clinical shock and 5 normotensive controls.3 In 9 of the 11 of patients, Trendelenburg positioning was ineffective, causing reductions in systolic, diastolic and mean arterial pressures. These authors noted that, in the head-down position, the viscera weigh down the diaphragm and compromise lung volumes. They also suggested that patients were at higher risk of cerebral edema, retinal detachment and brachial nerve paralysis.3
FDA and Xolair:
[url]http://www.reuters.com/article/2009/11/18/fda-xolair-idUSN1812824820091118[/url]QuoteDr. Peter Starke of the FDA's pulmonary and allergy products division told the meeting that while the drug had met its targets in clinical trials, its effectiveness in children was "invariably small and clinically modest."
The drug's current label for adult use contains a warning that it may cause anaphylaxis -- a severe allergic reaction that can be fatal -- and could also put patients at risk of cancer.
In no way was my son a candidate to participate. Non food allergy related, not one prior hospitalization, not even a visit to the ER related to Asthma.
Because it often comes with a pricetag that you can't see when you sign on-- a pricetag that NOBODY knows at the time, more to the point.
Ark, I LOVE the tacrolimus type meds. For bad eczema around the eyes, there is nothing better. Steroids work great, right up until you are blind from your uncontrolled glaucoma and cataracts. I warn all my patients about the possible risk, and they all prefer to use it anyways. Agreed, slathering all over a small child's body is a much larger dose than an adult's eyes, but for them it makes the risk more acceptable I think.
I wish to caution that widespread adoption of any OIT methods is premature, and may lead to crushing the hopes of patients, and worse.
"Oral Immunotherapy for Food Allergy: Not Ready for Prime Time"
[url]http://www.asthmaallergieschildren.com/2012/05/11/oral-immunotherapy-for-food-allergy-not-ready-for-prime-time/[/url]QuoteI wish to caution that widespread adoption of any OIT methods is premature, and may lead to crushing the hopes of patients, and worse.
There is a risk for unanticipated OIT reaction (not during buildup) when the patient has fever, viral infection, exercise, menses.(emphasis mine; how often would one of those conditions be true for an adolescent?)
In a study of 19 patients on OIT for 33-70 months, OIT was stopped for 4 weeks: 11 remained tolerant to 5000 mg of PN.
Can we merge threads with the one we have? It's already 5pp long.
Desensitization Programs in the US -- OIT
The amount of time on maintenance dose makes a big difference. Longer duration of OIT is more effective.
How long can maintenance dose be held before "sustained unresponsiveness" can be claimed? We still don't know.
Is tolerance the goal? Is it even possible in severely allergic patients? Might desensitization be sufficient? This is all up for discussion.
Preliminary data show oral immunotherapy using multiple food allergens simultaneously to be feasible and relatively safe when performed in a hospital setting with trained personnel.
Our new finding can help us try to determine whether, for the long term, someone's allergy has truly been shut off so people can eat ad lib.
Nadeau said this test might one day help doctors in deciding whether a person "can safely go off of immunotherapy, or if they need to continue to eat the food every day."
James Tarbox, MD @Mjj289 · 2h ago
#AAAAI 98% have a reaction occur during oral immunotherapy;10% at home, 4% needed epi
Priya Bansal, MD @Allergygal1 · 2h ago
5-20% of patients on oral immunotherapy have been going on to develop #eosinophilic esophagitis. #AAAAI
Dr. Dave Stukus @AllergyKidsDoc Feb 28
Only 35% who were successfully desensitized passed an oral challenge after 3 mos of stopping daily peanut#foodallergy #AAAAI
The 20 subjects in the study all passed the food challenge, but the results of the second food challenge differed between the group who avoided peanut for one month and the group who avoided it for three months. Of the subjects that avoided peanut for one month following the first food challenge, 16 of 16 passed the second food challenge. However, only one of four subjects who avoided peanut for three months passed the second food challenge.
Symptom diaries showed 54% of subjects received treatment at home for likely related events at some point during OIT, 53% with antihistamines, 18% with albuterol, 9% with epinephrine, and 15% had an emergency room visit. Over the course of OIT, 37% of subjects should have received epinephrine based on symptom severity yet were not given any.
Patients with asthma experience more adverse reactions and are less likely to reach full desensitization, but most reach a protective dose during milk-OIT.
Conclusions: BFAHF-2 pretreatment reduced adverse reactions during OIT, and produced greater post-OIT protection and a beneficial immunregulation. Addition of BFAHF-2 to an OIT regimen for human food allergy may improve its safety and efficacy.
"Safety Of Pediatric Peanut Oral Immunotherapy Is Complicated By High Adverse Event Rates"
Yamini Virkud, MD, MA, , , ,
https://aaaai.confex.com/aaaai/2014/webprogram/Paper11185.htmlQuoteSymptom diaries showed 54% of subjects received treatment at home for likely related events at some point during OIT, 53% with antihistamines, 18% with albuterol, 9% with epinephrine, and 15% had an emergency room visit. Over the course of OIT, 37% of subjects should have received epinephrine based on symptom severity yet were not given any.
"B-Fahf-2 Pretreatment Reduces OIT Adverse Reactions and Improves Outcomes In a Murine Model Of Multiple Nut Allergy"
Xiu-Min Li, MD, , , , ,
https://aaaai.confex.com/aaaai/2014/webprogram/Paper12602.htmlQuoteConclusions: BFAHF-2 pretreatment reduced adverse reactions during OIT, and produced greater post-OIT protection and a beneficial immunregulation. Addition of BFAHF-2 to an OIT regimen for human food allergy may improve its safety and efficacy.
What's next in food allergy immunotherapy?
Wood laid out six new frontiers for the field
Here we review recent progress and areas of concern for the role of these forms of immunotherapy as an emerging treatment for food allergy.
I think we’re about to enter a new dimension of compliance issues because of burgeoning research into treating food-allergies, whether through desensitization—oral immunotherapy (OIT)—or immune modulation via the traditional Chinese medicine-based treatments of Dr. Xiu-Min Li.
The one person I would go to who isn't Mt Sinai personnel on FAHF is booandbrimom because she's been through the protocols in clinical trial. Her blog and experiences I would trust.
You're good at clearinghouse threads I could feed you the stream of what I have. I have some slides and recorded presentations I haven't posted yet. Am absolutely willing to share but I have not had time to clean up and put in drop box.
herbal medicine is among the most plausible of “complementary and alternative medicine” (CAM) or “integrative medicine” for the simple reason that, for an herb to have a medical effect, there must be a chemical (or chemicals) in it that have pharmacological activity. In other words, there have to be drugs in them thar plants! That’s why pharmaceutical companies and the NIH are so interested in screening natural compounds for chemical properties and pharmaceutical activities that might indicate that they could function as useful drugs.
Traditional Chinese Medicine (TCM) is a collection of beliefs and practices that was accurately described in the 1930′s by a Chinese medical school dean as a “weird medley of philosophy, religion, superstition, magic, alchemy, astrology, feng shui, divination, sorcery, demonology and quackery.”
Uncritically introducing therapies that are by their very nature unscientific, therapies like homeopathy, reiki, reflexology, and “energy medicine” taints the entire scientific enterprise at these institutions. Worse, offering such therapies outside the context of a clinical trial in academic medical centers gives the patina of scientific credibility to therapies that have not earned it, promoting the impression that science supports their efficacy.
Dr. Katz argued — convincingly, I might add — that some instances where “alternative” medicines are criticized for lack of sufficient supporting evidence are more attributable to the profit motive driving drug development than to any lack of efficacy.
Islamic medicine is unlikely to be included in any “Eastern medicine revolution” that may be underway.
Dr. David L. Katz is apparently unhappy with me.
CONCLUSION:
Multi-allergen OIT with or without omalizumab leads to improvement in caregiver HRQL, suggesting that mOIT can help relieve the psychosocial and economic burden FA imposes on caregivers of food-allergic children.
Teenagers with persistent asthma, high milk- or egg-specific IgE levels and noncompliant behavior were a high-risk group for oral immunotherapy and experienced life-threatening reactions to the treatment, according to recent study results.
Researchers at Texas Children’s Hospital and Baylor College of Medicine have begun a peanut immunotherapy trial to investigate the ability of peanut allergic children to take peanut flour.
New onset of EoE after OIT occurs in up to 2.7% of patients with IgE-mediated food allergy undergoing this treatment strategy. The limited data on the utility of allergen immunotherapy as a therapy for EoE prevent a recommendation for this treatment option.
In summary, peanut immunotherapy presents an exciting, potentially disease-modifying treatment approach for peanut allergy, but is not yet recommended for routine clinical use and should not be attempted outside specialist allergy units.
How does OIT work — and why doesn’t it last without continuous exposure? Is it possible to understand at a molecular level what causes food allergies, and how OIT changes those processes?
#ACAAI Burks: If kids are going to develop EoE as a consequence of OIT treatment usually see it in first weeks/months, not later
More on why OIT is not Rx yet: Suppression of the immunologic response to peanut during OIT is often transient. dlvr.it/7yn55B
OIT and SLIT for peanut allergy induce rapid suppression of basophil effector functions, DC activation, and TH2 cytokine responses during the initial phases of immunotherapy in an antigen-nonspecific manner. Although there was some interindividual variation, in many patients suppression appeared to be temporary.
Peanut SLIT induced a modest level of desensitization, decreased immunologic activity over 3 years in responders, and had an excellent long-term safety profile. However, most patients discontinued therapy by the end of year 3, and only 10.8% of subjects achieved sustained unresponsiveness.
Julie Wang presenting data on Chinese Herbal Medicine (FAHF-5) as a treatment for Food Allergy #AAAAI15
Wang: 17% success in the treatment group and 45% in the placebo group. Yes you read that correctly...this was a 'negative' study #AAAAI15
We aim to fulfill the 2011 shared vision of establishing a standardized OIT product and protocol, to be made available in allergists’ offices nationwide and beyond, so that people with food allergies can live with less fear and more safety.
“How can we even argue that we should be moving forward with a potentially dangerous treatment before we've done the usual studies that would be required to bring a new treatment to the prime time. [In fact], the only reason we can do it, is because the treatment is available in the grocery store. If this was a drug, it would be far from approval, far from use, and no one in this room would touch is in their practice, as it has not been adequately studied.”
"Stop Subsidizing Big Pharma"
[url]http://www.nytimes.com/2015/01/06/opinion/stop-subsidizing-big-pharma.html?smprod=nytcore-iphone&smid=nytcore-iphone-share[/url]QuoteROBERT J. BEALL, the president and chief executive of the Cystic Fibrosis Foundation, called his recent decision to sell the royalty rights to his organization’s research a “game changer.”QuoteSo far, there is no effort to extend government price controls to venture-philanthropy-derived research.
----------------------------------------------------
"Deal by Cystic Fibrosis Foundation Raises Cash and Some Concern"
[url]http://www.nytimes.com/2014/11/19/business/for-cystic-fibrosis-foundation-venture-yields-windfall-in-hope-and-cash.html?_r=0[/url]Quotethere is some concern that a profit motive could divert the organizations from their primary mission — helping patients — and create a conflict of interest.QuoteCritics say that perhaps because a higher price means higher royalty payments, the foundation did not do enough to bring the cost down.
“When you look at statistics for the entire U.S. population, a food allergy reaction sends someone to the emergency room every three minutes,” said ARC CEO Bryan Walser, MD. “The constant vigilance required for allergen avoidance creates stress not just for the affected individuals and their families, but for whole communities trying to accommodate and protect the individuals. Treatment with OIT could be like using safety belts and having airbags in a car—we want it to be available and used to protect children and their families.”
Contributing Editor Claire Gagné spoke to allergist Corinne Keet about her current research, her personal connection to the disease, and what it was like to cast doubt on the effectiveness of OIT.
I think it’s really important that these therapies are rigorously evaluated before being adopted in the community. These treatments are not low risk, and it’s essential that we understand the benefits and the risks.
The drug -- called Viaskin Peanut
If I had only read here . . .
PUtting Ehrlich's statement from March 2015 here. Thought we already had link in this thread, but I quickly rechecked and did not see it.
[url]http://asthmaallergieschildren.com/2015/03/11/old-allergists-and-new-treatments/[/url]
Related to the OIT 101 Facebook link and group:
There seem to be many recent instances where some pro-OIT group members and/or leaders have created "Look alike" food allergy groups at Facebook (to look like the frontpage of some of the bigger FB food allergy groups) . . . with the express purpose of a push to private practice OIT and perhaps discouraging balanced discussion and/orother treatments.
I find this just as concerning, if not more so, than FARE's link to Aimmune.
I think reasonable, respected allergists can have opposing and valid opinions on this topic.
I think reasonable, respected allergists can have opposing and valid opinions on this topic.
I also don't like that a food protein is being moved into monetizing position here with a PATENT-- no, no, no.
One reason why SCIT has been relatively affordable and available to hundreds of thousands of patients over the past six decades is that the extracts are NOT "patent" materials.
:disappointed:
This is like patenting BRC genes-- I don't like that either-- because when you start making naturally-occurring nucleic acids, proteins, and the like someone's intellectual property, you are CONTROLLING HOW THEY CAN BE USED. Even for research purposes.
My gosh I don't think that is a good thing here. NO way.
A decade ago, US law said human genes were patentable — which meant patent holders had the right to stop anyone from sequencing, testing or even looking at a patented gene. Troubled by the way this law both harmed patients and created a barrier to biomedical innovation, Tania Simoncelli and her colleagues at the ACLU challenged it. In this riveting talk, hear the story of how they took a case everybody told them they would lose all the way to the Supreme Court.
Did you see the recent issue of Allergic Living? It was like half the magazine was an advertisement for Aim mune. There was the opening by the editor praising it, the article on Aim mune itself that, and then an article from FARE pushing for it. I didn't see a mention of the link between FARE an Aim mune. I'm not actually down on Aim mune but something about all that didn't feel quite right to me.This is key, I think, when considering the place Aimmune seems to occupy in moving this type treatment forward. I'd been considering OIT for a few years but without any allergists in my state/city offering the treatment I hesitated. I kept picturing myself on the highway in the middle of nowhere with my daughter reacting and I'd shelve the idea for another month or so.
I think Aim mune could help more people get OIT and I think that done properly, OIT will work on most, but not all, people with FAs. I think it will make more doctors feel comfortable doing it. Not all will want to do it or be ready for all that it involves, even if they use a pre-packaged pill. I do not think using this pill is better than the way it is currently done in OIT clinics, though.
AYFKM. Not enough of a lesson learned with Mylan? Icarus much? I'm so incredibly glad there's NO RELATIONSHIP between the advisory board and Aimmune. I'm sure 'Dan' rode the Tardis in from another dimension with no Aimmune overlap whatsoever. For the record, I have zippo to do with that wack OIT101 group riding my posts.
Good to know you're pleased, James.QuoteUntil resigning to become Chief Medical Officer of Aimmune, Dr. Adelman was a member of the prestigious Research Advisory Board of Food Allergy Research & Education (FARE), the world’s largest private funder of food allergy research. For several years, he was actively involved in reviewing FARE’s research funding and helped to shape the organization’s overall research strategy.
“We’re deeply grateful for the contributions Dan has made as a member of our Research Advisory Board, and we’re pleased to see him join Aimmune,” said James R. Baker, Jr., M.D., FARE CEO and Chief Medical Officer. “Dan’s leadership and clinical expertise will be great assets as Aimmune continues to progress toward what would be the first FDA-approved oral immunotherapy for food allergies. This treatment could make a great impact on the lives of millions of people at risk from peanut allergy.”
For timeline purposes this was released right before Epigate really blew up. Dated Jun 21, 2016.
businesswire.com/news/home/20160621005527/en/Aimmune-Therapeutics-Appoints-Daniel-Adelman-M.D.-Chief
So, for the folks who have been doing OIT w/o FDA approval, enlighten me on how it works with the insurance plans. I ain't judging you on the choice to pursue OIT, I just wanna know if insurance is covering it. Something I heard a while ago is coming back to me now about FARE trying to establish a clinical network. If you've been doing OIT for a while do you know if your office is part of the FARE clinical network or do they essentially don't care a fig about FARE's clinical club?
Dr. Dave Stukus @AllergyKidsDoc
.@suziefro please do me a favor - take my name off your site. You know you stole this quote & are misrepresenting me. pic.twitter.com/Z1x09925Bw[\quote]
twitter.com/AllergyKidsDoc/status/806347634562793472/photo/1
This post does not constitute an endorsement of Allergy Bro. On this single issue I will not let any of my activity be complicit in any intended or unintended attempt to co-opt his.
Covered by insurance, fyi.
Putting this here -- need to research -- feel free to comment
Allergic Tension Fatigue Syndrome
and depression as poss side effect of some food allergy treatments (OIT esp??) . . . .
Not necessarily about anxiety or depression due to fear of ingesting allergen(s), but instead an actual physical or chemical reaction that is the body's response to the allergen? Does that makes sense?