Crohn’s map vaccine

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Delta_hippo

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Jan 8, 2019
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Just to let people know the UK team developing the vaccine (based on the theory that Crohn’s is due to impaired immune response to map bacteria) announced today on Facebook they have injected the first Crohn’s patient. From what I can see they are still in phase 1 safety trials although they have already done a safety trial on healthy volunteers. This has been a long time coming as largely funded by patients and families from what I can see. But hopefully the trial will go well and we will get a good treatment option down the line.
 
How many more years do they estimate? It's been about 30 so far.

And wonder why no large pharma has made a map vaccine.

Map is a bacteria its good news for crohns, few more drugs are on the horizon targeting other bacteria this is also good news.

I think we should have tried targeting bacteria before suppressing the immune system.

There is a Japanese company making a pill to make bacteria less sticky to the intestine.

Organoids are being made, the nhs in the uk are going to start trying organoids soon.
 
Just to update folk the guy who was the first Crohn’s patient to receive a low dose of the anti map vaccine has posted an update in Facebook. He says he is only one person and cannot draw any conclusions yet but he is now averaging 2 BMs a day and getting to the loo in time which is better than before and this has lasted a few months.
 
Loo means toilet or lavatory in the UK I think the Americans say restroom?
Don’t know about flagelin sorry
He’s in group 1 as I understand it which means half dose of vaccine 1
There are 5 groups altogether the 5th ones get full dose of both jabs if all gone well in the earlier lower dose groups
This has been a slow moving project for a long time it was one retired gastro professor working on shoestring budget and a theory
He sadly passed away earlier this year
Other experts were sufficiently interested in his ideas to get involved and take over the project.
His daughter who is a GP I think posts occasional updates on a Crohn’s map vaccine Facebook group which is where I saw Sean’s progress post
He is saying “cautiously optimistic” but obviously doesn’t know how the other guinea pigs have responded
Worth keeping an eye on is my view
 
Horses #1 said:
Has there been an update on this patient and to the effectiveness of the vaccine? I haven't been able to find any further information. I am in the US. Thank you.
Click to expand...


The update posted here by @Delta_hippo was provided by that patient:

Delta_hippo said:
Just to update folk the guy who was the first Crohn’s patient to receive a low dose of the anti map vaccine has posted an update in Facebook. He says he is only one person and cannot draw any conclusions yet but he is now averaging 2 BMs a day and getting to the loo in time which is better than before and this has lasted a few months.
Click to expand...

Crohn’s Map Vaccine has a Facebook support group.

There hasn’t been any updates other than that posted by @Delta_hippo above.
 
To summarise, UK based and able to go to St Guys hospital in London, age 18-50, mild-moderate Crohn’s, not taking steroids biologics or immune modulating meds, no history of vaccine allergy, no females trying to get pregnant.
 
Delta_hippo said:
To summarise, UK based and able to go to St Guys hospital in London, age 18-50, mild-moderate Crohn’s, not taking steroids biologics or immune modulating meds, no history of vaccine allergy, no females trying to get pregnant.
Click to expand...
Those people are going to be hard to find. Anyone with moderate Crohn's who is taking neither steroids, nor biologics, nor immune modulators is just asking for trouble.
 
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Scipio said:
Those people are going to be hard to find. Anyone with moderate Crohn's who is taking neither steroids, nor biologics, nor immune modulators is just asking for trouble.
Click to expand...
Yep. I think as well as safety they are looking to see the immune system response to the vaccine so guess they don’t want that artificially altering. You can’t have never been on meds just not currently or last 3 months. It is going to be a real challenge I expect but I really hope they find enough volunteers.
 
sharkz said:
This is a good sign, is there a research institution in US that has any interest?
Click to expand...

In clinical trials it normally works the other way around, so a better way to state the question is does the drug company have any interest including a US research institution in the trial?

Normally. the sponsor of the trial (the drug company) approaches the research instiution or hospital and recruits them to participate in the trial (and offers to pay them). So it's not usually a question of the institution spontaneously having an interest and volunteering to do the trial. So if they are not doing the trial in the US it is probably because they have not approached any US sites about it, and/or their budget is very tight so they cannot afford to go beyond the one or two sites they have in the UK.
 
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I see its being done at an Nhs hospital.

This means national health service, its a state of the art hospital and fully tax payer funded.

We have many nhs hospitals in the uk. Probably they can easily find on the nhs records from the whole uk some suitable candidates and see if they are interested.

We have around 150k crohns patients I think, and probably a good percent on no meds.

They are pushing meds on people on the uk the last 5-10 years maybe.

What would happen if there is some side effects and hospital care is needed I don't know.

Would the uk tax payer foot this bill, probably can't rule it out.
 
It was all started up by a retired gastro Professor Herman-Taylor sadly recently deceased. For a long time they were running on patient fundraising and donations. A company called HAV vaccines got set up to fundraise and have got funds through selling shares. The Jenner Institute at Oxford are also involved.

My GI thought JPT struggled to get a lot of research funding because there wasn’t much evidence to support his theories and a big research study in Australia by Selby et al was key in this. JPTs supporters argue the study was flawed. Either way, no research grants.
Also problematic was that map is apparently very hard to detect so they have spent a lot of time and money building a diagnostic test.
I guess the issue with a big company buying a stake is that if it works, do they want to market a jab that resolves Crohn’s or keep selling stelara injections for example to the same patient group for the price of a small car every eight weeks. As s patient I want to know if the theory is proved valid and if the jab works and if it does I want to be able to get it and have it as an option for my little one in case I have passed this effing awful disease on, not to have some anonymous shareholders bury it in a drawer, or never get any answers because they can’t recruit etc etc.
Anyway I have banged the drum enough for one day 😊 hope you are all keeping well
 
westernbuddy said:
I see its being done at an Nhs hospital.

This means national health service, its a state of the art hospital and fully tax payer funded.

We have many nhs hospitals in the uk. Probably they can easily find on the nhs records from the whole uk some suitable candidates and see if they are interested.

We have around 150k crohns patients I think, and probably a good percent on no meds.

They are pushing meds on people on the uk the last 5-10 years maybe.

What would happen if there is some side effects and hospital care is needed I don't know.

Would the uk tax payer foot this bill, probably can't rule it out.
Click to expand...
Yes in the UK healthcare is free (unless you have gone private to be seen faster) so any problem would be treated. The whole system is a bit overrun at the moment with covid. So for example a friend fell over the other day and broke his wrist, 7 hours sat in A and E (ER in US speak) x-ray plastered and sent home, no medical bill.
The NHS is a bit more broken up though in terms of different trusts, regions etc I don’t know if there is s central database where they could say here are all the eligible Crohn’s patients. In my area for example the IBD nurse told me they are fairly relaxed about prescribing biologics in other areas it is harder to get approved, I don’t know but am certainly grateful for my stelara (I did try and fail several cheaper things first).
 
Delta_hippo said:
I guess the issue with a big company buying a stake is that if it works, do they want to market a jab that resolves Crohn’s or keep selling stelara injections for example to the same patient group for the price of a small car every eight weeks.
Click to expand...

The notion that drug companies deliberately suppress cures in order to continue selling expensive, less effective, chronic treatments is misguided. I agree that drug companies are very greedy and charge outrageous prices, but they also compete fiercely with each other. They would love to be the company that robs their rivals of a cash cow product by putting out a better product - up to and including a complete cure if they can.

A good example of this is with hepatitis C. Companies were busy selling chronic treatments for hep C for decades, but when new drug technology was developed they were perfectly happy to actually cure hep C. Today curing hep C is routine. 15 years ago it was impossible. And the hep C cure drugs are obscenely expensive.

So if the big drug companies thought that Prof. Herman-Taylor's work had much merit they would happily buy it up, make a success of it, crush their competitors with it, and charge a fortune for it. Instead of selling Stelara for the price of a small car they would be selling the MAP vaccine and follow-on boosters - each dose for the price of a Ferrari.
 
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The sad fact is that, in the US at least, pharmaceuticals are not priced according to how expensive they are to manufacture, nor on how much money the company spent on developing and testing the drug, nor anything else like that. Those factors are almost completely irrelevant. It's a free market econmomy so drugs, like automobiles, cell phones, and hamburgers, are priced according to how much the market will bear.

They call it "value pricing" - meaning that they research the question "How much would it be worth to a Crohn's patient, or better yet to the desparate parents of a suffering Crohn's child, to be rid of the disease once and for all?" And that's what they would charge for a Crohn's cure drug.

Ask yourself that question. How much would you pay to make Crohn's go away?
 
Scipio said:
The sad fact is that, in the US at least, pharmaceuticals are not priced according to how expensive they are to manufacture, nor on how much money the company spent on developing and testing the drug, nor anything else like that. Those factors are almost completely irrelevant. It's a free market econmomy so drugs, like automobiles, cell phones, and hamburgers, are priced according to how much the market will bear.

They call it "value pricing" - meaning that they research the question "How much would it be worth to a Crohn's patient, or better yet to the desparate parents of a suffering Crohn's child, to be rid of the disease once and for all?" And that's what they would charge for a Crohn's cure drug.

Ask yourself that question. How much would you pay to make Crohn's go away?
Click to expand...

Everything so I need the pharmaceuticals to be listening. All these "assets" are meaningless if they can't deliver health for ourselves or our loved ones.
 
westernbuddy said:
How many more years do they estimate? It's been about 30 so far.

And wonder why no large pharma has made a map vaccine.

Map is a bacteria its good news for crohns, few more drugs are on the horizon targeting other bacteria this is also good news.

I think we should have tried targeting bacteria before suppressing the immune system.

There is a Japanese company making a pill to make bacteria less sticky to the intestine.

Organoids are being made, the nhs in the uk are going to start trying organoids soon.
Click to expand...

I don't think any Big Pharma company would be interested in a vaccine, or actually in a cure for Crohns.

They would not be able to charge patients anymore $10000 monthly or bimonthly. Biologics are a cash cow for them.

Biologics are perfect from their point of view....they make the patient get better but they dont cure them, and they will be able to sell them the biologics "per secula seculorum"

If there is a vaccine or a cure for Crohns that would be a finantial disaster for them.
 
Kannassee said:
I don't think any Big Pharma company would be interested in a vaccine, or actually in a cure for Crohns.

They would not be able to charge patients anymore $10000 monthly or bimonthly. Biologics are a cash cow for them.

Biologics are perfect from their point of view....they make the patient get better but they dont cure them, and they will be able to sell them the biologics "per secula seculorum"

If there is a vaccine or a cure for Crohns that would be a finantial disaster for them.
Click to expand...

https://www.nbcnews.com/politics/co...ices-two-major-drugs-house-oversight-n1267591
https://www.labaton.com/press/labat...tition-for-blockbuster-drug-humira-in-the-u.s
 
I think the target date for written up and published report is April 2023. In my very limited research experience these things always take longer.
 

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