Given that anaphylaxis can be deadly and staff at food places can be sometimes less than reliable about food allergy concerns, I can see this being appealing to someone with severe food allergies who wants a more normal life.
It would be nice if we figured out what causes allergies and fixed it but, I mean, we may never fully solve that. For some people, "take injections for a few weeks and be able to go out with friends without stressing this will involve another life-threatening health event and trip to the ER" will be of adequate value to endure the course of treatment.
As someone with Celiac disease, who often eats at restaurants, this is a bit of an understatement. Even in restaurants where things are marked allergen free on the menu, it is often the case that staff will make mistakes. More often than not, staff aren't even informed about the basics of food, things like eggs and dairy being two separate foods, or that they can't just scrape some sauce off of a bun if they put it there by mistake, etc. If I had a life threatening allergy, I would never set foot in a restaurant. It's terrifying.
In 2000, I was working at an NYC restaurant (Josie's on Third) -- it was a new non-dairy health-focused organic-everything restaurant. The waitstaff was trained in all the ingredients and many of the sources and were highly conscious of needs of our customers. We were tested on it a staff meal.
One day, two friends sat to dine... we brought bread and our non-dairy spread. Customer asked "what is this?" I replied, "it is red-pepper tahini, an alternative to butter". I take their order, tend to other tables and arranging beverages, when I come back around 5 minutes later the table is empty. I ask my manager "what happened?"
The lady had a severe sesame allergy and was rushed to the hospital -- *she did not know that tahini was sesame paste and I did not tell her*. I have no idea what happened to her and I think about this several times per year.
For the last 15+ years, I have been a hands-on operator of complex computer systems operator. This experience has absolutely shaped how I communicate with teams, how I look at how failures may happen, how to expect the unexpected, etc.
I now have a son with peanut allergies. It also influences how we dine. It is not easy and I'm glad there's out-of-band solutions like these drug therapies. We are not there yet, but might consider it.
Definitely odd that a person with a severe sesame allergy didn't know about tahini - she can't even eat hummus
That said, I suppose decades back such foods were less mainstream and/or she was new to the allergy
I don’t think you should feel too bad about this. Having a severe sesame allergy and not knowing what tahini is and also not asking about sesame in dishes is quite reckless IMO. They were bound to accidentally eat something with tahini in it eventually.
I saw similar with corn, my cat was having a severe reaction to something and vet suggested getting food without corn in it, then gave me a list of like 20 different names for ingredients manufacturers use to hide corn.
(though with your's it's not we're trying to hide/obfuscate ingredients)
Today, my partner is a severe celiac. Any traces of gluten takes them out for at least 2 weeks. Any hesitation from a restaurant from a restaurant and we are gone.
I think that person ended up ordering. Of course literally nothing in that restaurant was safe for celiac if for nothing else than cross contamination.
So sorry.
They should be able to answer specific questions or find out from the Chef. Ultimately it's up to the customer to understand the risks of eating out.
Servers go by the menu as well. It isn't like there is a list most places.
If the owners cared about your allergies, they'd make sure their staff could find out easily. Blame the folks that own the place, not the servers.
any upcoming new celiac tech you find exciting?
The study refers to checking patients after this many weeks, but my understanding is that you're supposed to keep taking it forever. From NPR:
> The medication is not intended for use during an allergic reaction. Instead, it is designed to be taken repeatedly every few weeks to help reduce the risk of reactions over time.
1: https://www.npr.org/2024/02/18/1232304606/fda-approval-food-...
Deep in the bowels of corporate HQ, at a board meeting:
"And the best part is, if people ever stop using it, their allergic reactions become more severe than before they started!"
Duration of Therapy
The appropriate duration of therapy for IgE-mediated food allergy has not been evaluated.
Periodically reassess the need for continued therapy.
I've been getting allergy immunotherapy for the past 3.5 years (not for food allergies, for stuff like cat, dog, grass, dust mites, etc.), and I have to go for the shots once a month. It's honestly not that big a deal. I only have another 1.5 years until my treatment is over, but if I had to do it for the rest of my life, it wouldn't be the worst thing, given the benefits.
This is of course assuming there aren't any bad reactions to this medicine... didn't read enough of the article or beyond to get that info.
Would you mind telling me what immunotherapy you get, specifically for cats? I'm currently on Grazax for grasses etc. I would love to be able to get a cat, but I am quite allergic and get flu-like symptoms after a while. (Also, my blood tests don't show that I'm allergic to cats, so that complicates things).
I take this exact drug for not-even-life-threatening allergies and the hassle is really not that bad. It's certainly less annoying than suffering through ragweed season every year :P
A one time customer isn't lucrative.
Seems better than dying of anaphylaxis but what do I know.
The truth is, even for food allergic people, the risk of death is low compared to other causes. EpiPens are very effective. Also, anaphylaxis is a very temporary condition. If you do get anaphylaxis then after a very short recovery period there are zero long term effects to worry about.
It's questionable whether intensive and risky treatments are warranted in most cases (remember Xolair carries its own risk of anaphylaxis).
We are pretty vigilant. If her anaphylactic reactions were more severe (I.e. airway constricting) we would be much more strict. But this approval seems perfect for us, since it won’t change our routines, but means we’re not punished for accidents.
Unfortunately neither Xolair or Dupixent has looked super promising in early study results when combined with OIT. But Dupixent in particular is approved to treat one of the possible side effects of OIT, EoE (inflammation of the esophagus), so I'm still hopeful.
100% helped eczema. I used to have it to the point all my fingers were split in 5-8 places and I’d rate the pain scale at 8-9/10 (10 being arm cut off). I used to get blisters under the skin that’d combine and basically just peal off the skin - https://www.mayoclinic.org/diseases-conditions/dyshidrosis/s...
Anyway, Dupixent made it entirely go away. I also found my allergies did improve (suddenly wasn’t allergic to dogs). That said, it did have a side effect of severely drying out my eyes and I’ll get weird rashes on my face periodically and it requires injections 2x per month. That said, I can use my hands now, frankly I can think too. Pain is gone, and idc about the symptoms.
I'm on Dupixent indefinitely for eczema, which it cures 100%. As a side effect, it 100% cured my seasonal hay fever and reduced many of my food allergies to a level, where I can just eat the food and ignore the very slight allergic reaction that remains.
For me, the entire field of monoclonal antibody therapy is pure magic. Absolutely amazing how well it works, a true silver bullet (with home injections twice a month and eye drops for the dry eyes).
My partner was on Dupixent for a while to shrink some nasal polyps—that one is twice a month.
Oxymetazoline is super potent and works immediately on nasal passages, but it can be risky to stay on for more than a few days straight.
Steroids like fluticasone don't work immediately, and take a couple of days to kick in, but you can use them indefinitely. Also, in addition to opening nasal passages, they have general anti-allergic effects -- i.e. they can help with itchy, watery eyes and facial swelling.
My first thought was that it could be good for kids, who are less good at checking for trace amounts of allergens, but then I saw that it requires injections, which kids aren't so great at.
A lot of drug manufacturers offer these programs: the bargain is essentially that they'll cover the brunt of your copay cost so long as your insurance company is still paying for the rest of it. Better to collect a few grand from the insurance company and reimburse the patient for a few hundred than to miss out on the sale entirely.
The federal government treats these as illegal kickbacks: https://oig.hhs.gov/documents/special-advisory-bulletins/878...
It feels wildly perverse. I’m incentivized to purchase this “expensive” medication once or twice and then the cost of all of my medical care the rest of the year is negligible.
https://www.health.gov.au/ministers/the-hon-greg-hunt-mp/med...
https://m.pbs.gov.au/medicine/item/10109c-10110d-10118m-1012...
In her case, this doesn't cure anything, but manages symptoms of MCAS. Not ideal, but way better than life without it.
Creating new drugs is absurdly expensive. Most new drugs target small population groups, which is why treatments do not already exist - the low hanging fruit with large market potential gets targeted first.
Just be happy a flag is planted in the ground. New drugs will be created from this that are different enough to avoid the patent, and new research will enhance it and reduce the side effects. This is just the beginning.
So there is plenty of space for lower prices. Plenty.
Here's the 2023 report from Roche, which owns Genentech.
https://assets.roche.com/f/176343/x/0ef2047502/ar23-roche-ho...
Page 17 shows that R&D costs for pharma is 10-20x larger than equity-based compensation. That's all stock-based compensation, for execs and regular people. Your claim is that it's the opposite.
Take Pfizer, R&D is $11B. You think executive comp is more than $11B?
The CEO total comp is $24M or 2%. The exec team is less than 10 people.
At least try to make believable claims.
I'm not sure why a generic hasn't hit the market yet, though. Maybe there's not enough demand to make it lucrative enough, unlike the golden child adalimumab...
That's not to say there are no generic MABs, it's that it is a far costlier process for the generic manufacturers to get up and running.
The individualized work is also why TIP doesn't scale-- even FAI itself hasn't opened offices outside of SoCal yet (east coast patients like myself have been begging internally for years for them to open locations nationwide).
Everyone would love to see FAI be more transparent, but just because they aren't doesn't mean the program doesn't work. Arguing "its not clinically proven, therefore it's not legitimate" feels pedantic when there's thousands of us in remission.
All this to say its hard to even get an EpiPen now. People using it unnecessarily during any panic attack and ending up in the ER is a bigger risk than the allergy itself.
It might be fair to say these treatments would be just as much as a psychological treatment - you have millions of people living in constant fear that this could help.
Out of curiosity I looked at actual case rate numbers: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5589409/ Less than 200 a year and more than half from drug related allergies. That's getting into death from lightning strike numbers or deaths from chicken pox.
(Obviously, this doesn't factor in the specific risk to someone with a known allergy, or without access to Epipens/care. But still a pretty low risk compared to the attention it gets.)
I also found a statement put out just last year by the American College of Allergy, Asthma & Immunology:
> "Injectable intramuscular epinephrine is the first-line treatment for anaphylaxis. Epinephrine is touted as "life-saving," in particular because observational studies have identified lack of prompt epinephrine treatment as a critical risk factor associated with anaphylaxis fatality. Although association is not causal, few would argue that epinephrine is not the optimal treatment for anaphylaxis, and do we have sufficient proof to suggest that epinephrine is actually "life-saving"? Epinephrine indeed works swiftly to reverse such symptoms of an immediate allergic reaction. However, there are abundant observational data that many cases of anaphylaxis are inherently self-limited and may resolve within 1 to 2 hours in most cases with or without treatment. In this perspective, the intent is to address and reframe the reality of the evidence we do have for what epinephrine does and does not accomplish and provide a perspective regarding the common "dogma" regarding the drug. There is a danger in using terms such as "life-threatening" and "life-saving" for anaphylaxis and epinephrine treatment, especially under the caution of frequently cited rhetoric that subsequent reactions are likely to be progressively more severe or potentially fatal. Use of such descriptions risks negatively polarizing our patients and adversely affecting their quality of life, given these terms can potentiate unnecessary fear. Epinephrine is in fact a wonderful drug, but it is important to not lose sight of the evidence for what it actually does in anaphylaxis treatment and why it is important to use this drug in anaphylaxis, as opposed to an emphasis on what it does not do."
> The delayed use of epinephrine, identified as a significant feature in several reports of fatal food anaphylaxis, is perhaps the risk factor most amenable to modification. This has, in part, driven the widespread provision of epinephrine autoinjectors for the management of anaphylaxis, although controversy exists as to their use in less severe, nonanaphylactic allergic reactions.
Your logic seems to be "because anaphylactic deaths are low, epipens generally aren't useful". It may be true that they're used too often - knowing what to do in the moment when your kid is swelling up, having trouble breathing, throwing up, or passing out, especially if they're very young or not verbal, is a challenge and an experience I don't wish on anyone. But the way I interpret the data is that anaphylactic deaths are low precisely because epipens are so commonly used and there is so much awareness and training around when/how to use them.
https://www.nih.gov/news-events/nih-research-matters/oral-im...
It's largely limited to young children (the immune system under age 5 is more resilient than it gets later), but for parents that are willing to front the fairly considerable expense and inconvenience up front, it does offer the prospect of actually outgrowing the peanut allergy and not suffering from it as an adult.
Sure the efficacy rates seem really promising here, but that's an extremely small group and if there are any concerns over age-based factors the cohorts are even smaller.
Add the fact that this medication is meant for long term use and I really don't know how we can claim any level of certainty with regards to long term safety. The study only followed the 168 participants (including placebos) for 16-20 weeks.
The good news is that if you diagnose food allergies early and start someone on oral immunotherapy when they’re extremely young (<2 years old), the early evidence is that you can build up significant tolerance with basically no side effects. That’s the boat my child is in - we started them on peanut OIT at just over 1 year old, and the worst symptoms were a skin breakout or two, and today they’d probably be able to eat a couple peanuts with no reaction.
The downside is they have to continue their daily dose forever. There are some interesting alternatives coming into the market though.
Edit: they will still need to always keep epipens nearby, but at least now there’s no fear of anaphylaxis when someone nearby on the plane eats a bag of peanuts.
The problem is extremely consistent and simple to describe. Every food I eat for more than a few days trends toward causing an anaphylactic reaction. I’ve heard every response imaginable from doctors, especially all the unhelpful and harmful gas-lighting type responses. “You can’t be allergic to everything!” I’ve changed hospital centers multiple times until now I see basically some of the absolutely most credentialed providers in the world. Their best guess is a condition called MCAS. This is a poorly described syndrome basically summarized as aberrant allergic type responses without a known cause. It is a diagnosis of exclusion. What’s absolutely insane about it is that it is “not criteria for disability” according to United States current standards. It has got to be the most insane thing that someone with a rare, life-threatening condition is struggling to stay alive and at the same time struggling to survive financially.
My primary care provider didn’t believe me for over a year until I brought beans to his appointment, a food I definitely do not have IgE allergy to (but have been eating for a week prior to that appointment), ate one bite, then he just watched me turn pale, have my HR go from 75 to 125, and have immense discomfort that lasted for a few hours. My stomach also ballooned out like I was pregnant. Even after that, he is like “I think you have something like splenic sequestration.” Yeah, I've never had changes in hemoglobin levels on labs at the emergency room. It really is like dystopian. It took 6 years before providers checked things like tryptase and PGD2, known immune mediators, to notice they are variable and for some sometimes out of the normal range.
I guess I bring this up because I really am at a loss for how to deal with this condition. I take all of the standard MCAS medications, which seem to reduce the severity of my reactions, however they do not prevent me from having to constantly switch what I eat or drink. I constantly struggle with malnutrition and disordered eating because I cannot eat anything regularly and stably.
Many patients with MCAS take Xolair after they try other medications that do not work well enough to see if it will help. We really need more efforts to deal with these types of problems and more medication research. More biological research as well because clearly immune knowledge is severely lacking. Supposedly many patients that develop Long Covid also develop problems with their mast cells too, so problems like this have to be increasing in incidence. Asthma, an immune system problem that used to be rare, has an almost 10% incidence now in the United States.
Is accidental exposure to these food allergens so common, even after being careful, that those at risk are willing to take that risk and spend the cost?
> Xolair is intended for repeated use to reduce the risk of allergic reactions and is not approved for the immediate emergency treatment of allergic reactions, including anaphylaxis.
(Crucially, IgE antibodies are not the part of your immune system that responds to infectious disease, so anti-IgE meds won't make you immunocompromised in any significant way.)
Edit: >Several lines of evidence suggest that IgE is important in host defense against parasites (see Section 9-23). Many parasites invade their hosts by secreting proteolytic enzymes that break down connective tissue and allow the parasite access to host tissues, and it has been proposed that these enzymes are particularly active at promoting TH2 responses. This idea receives some support from the many examples of allergens that are enzymes.
The IgE-parasite connection is actually a bit part of the hygiene hypothesis, and I have personal experience with helminth therapy. It put a serious permanent dent in my animal and pollen allergies, long after the session (I forget how long they were active but I re-inocculated N. americanus twice and it was roughly a 2-3 year period).
Once you get over the squick factor and the really terrible itching at the site that lasts 12-24h, it's great.
The medicine exists, now it is just a matter of willpower.
Edit: I would save up and pay $1000 but twice a month forever? womp womp
Not a great side effect profile
Not even very effective
Yup sounds like medicine in the 21st century. I think we're going to cull ourselves as a species because we're not at all aligned with doing things that actually make people healthier, unless that also happens to make good money.
