• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Why do we never talk about a cure?

It's really as simple as that. Every discussion, advert or online thread has always been about managing the symptoms; reducing the inflammation, boosting b12 and iron levels. Why no discussion about a cure? There must be hundreds of thousands across the globe with IBD costing many millions of pounds yet there is no discussion or progress on a cure?

It is odd to think of the progress made against cancer and the investment and profile that it enjoys.Yet something as life destroying/altering as IBD receives cursory coverage; revolving around how people are now confident enough to have a bag and use a public swimming pool.

I draw the contrast merely to illustrate how far IBD has to go to attract the coverage and funding that will really help us to make significant breakthroughs.

Chin up though, we're a great community full of the bravest, toughest people i've ever met. All we need now is for everyone else to recognise that.
 
Last edited:
I recently made a post asking if anyone thought there was going to be a cure anytime soon and I don't believe anyone did. :(
 
Have you heard about Anti-map therapy and the Crohn's vaccine that is being developed? There are great strides being made to not manage Crohn's but eradicate it from the body.
 
For me personally: I find it depressing. I would love a cure but I prefer not to count on there being on in my lifetime because I predict I will be disappointed. I would rather try for remission possibly which I know can happen (whether it can happen for me is a whole different story but I digress).

Basically I feel like holding out for a cure is putting my life on hold. I have so many thing I want to do and (again for me personally) if I felt strongly in a cure I would want to 'wait' for the cure before really living my life.

It's hard to explain but that's my line of thinking.
 
Totally agree.

I had this discussion with C&C UK about this and below were the correspondence, load fo old bull if you ask me and it sounds like people just want to look after their own arses and keep a job.....

Dear xxxxxx

Thank you for taking the time to contact Crohn’s and Colitis UK. You explain that you are concerned that the focus of our fundraising and latest news is on managing Inflammatory Bowel Disease (IBD) and not on finding a cure.

We agree that finding a cure for IBD is the ultimate goal and this is incorporated into our vision for the charity which is to “ work with everyone affected by Crohn’s and Colitis, and help them achieve a better quality of life by providing support, improving services and ultimately finding a cure”.

We have a two-pronged approach. We invest in funding research, but acknowledge that finding a cure will take time and, in the meantime, believe it is vital to work at improving the lives of the thousands of people who struggle with IBD on a daily basis.

The following link takes you to the research pages on our website where you can see the medical research projects we have invested in (including the IBD BioResource) as well as those projects which aim to improve living with IBD: http://www.crohnsandcolitis.org.uk/research/projects

I hope this response is helpful but please do not hesitate to contact us again if you have any further queries or if you require our support in the future.

Kind regards

xxxx
Information Team

Crohn's and Colitis UK
Information Service
9 am to 5 pm, Monday, Tuesday, Wednesday and Friday
9 am to 1 pm, Thursday
0300 222 5700

My Email:

Hi there

I visit your website a lot being a long term Crohns sufferer however I am beginning to feel that all the fundraising information and investment along with the latest news is too focused on managing IBD. There really needs to be more made of finding a cure and what is being done in that regard. I would prefer to see available funds invested in finding a cure, not yet another harmful drug that just masks the problem.

Us sufferers don’t want to be managed, we want to be cured!!

You guys do a great job however please remember that when we are hunched over in pain, welded to the toilet , unable to play with our children or any of the other unfair hands we have been dealt what we really want news on and money to be spent on is finding a cure to rid us all of this devastating disease.

Sorry for the rant, I just want to be cured, not managed and I think you will find most visitors to you site feel the same way.
 

Scipio

Well-known member
Location
San Diego
I think about a cure every day. But the more I have learned about this disease the more I've come to realize it's going to be long hard battle to get to a cure.

Here's what I posted on the earlier thread that lenny mentioned:

I doubt that Crohn's will be cured in our lifetimes - if by "cure" we mean that the disease is treated, the symptoms and other ill effects are abolished by the treatment, the treatment can then be stopped, and the patient then goes back to leading a normal life with little or no risk of return of the disease.

Unfortunately, this is not a simple condition like say an infectious disease where if you stamp out the germ the disease is gone. It's far more complex than that.

What has gotten enormously better with Crohn's over the past 20 years is the management of the disease - treatment to reduce or abolish the symptoms, reduce the damage to the gut, and significantly improve the quality of life for the patients.

The current research holds out the very real hope management of the disease will continue to improve over the next 20 years such that most patients can live a near-normal life. Not completely normal and not all patients - the disease is far too variable in presentation and severity for that to be a realistic hope. But I'm confident that things overall will continue to get better and better as the research goes forward.

Bottom line for the future: Cure - No. Better and better management - Yes.
 
Already have multiple reports of supposed cure using Fecal Transplants, time will tell if this is true, I believe it is and some scientists do to. And many more reports of miraculous remissions in both forms of IBD. Read the initial post of the FMT thread in the link below for more info.
 
It's really as simple as that. Every discussion, advert or online thread has always been about managing the symptoms; reducing the inflammation, boosting b12 and iron levels. Why no discussion about a cure?
There are lots of discussions about a cure, you are maybe not looking in the right place. One of the things that baffles me about this forum is that when a potential cure is discussed no one really seems to care or take any notice. People have become so conditioned by the "it's complicated", "we don't know the cause" dogma that when someone steps forward and says that is not the case no one listens.

To find a cure, there are several significant steps:
  1. Identify an underlying cause
  2. Identify a treatment strategy that deals with the underlying cause and reverses the symptoms
  3. Clinically trial the treatment

Depending on your point of view, the cause of Crohn's was identified a long time ago. In fact, Burrill Crohn differentiated Crohn's from intestinal tuberculosis in 1932 and believed it was caused by another mycobacterial infection - Mycobacterium Avium sub-species Paratuberculosis.

Similarly, there have been treatment strategies that have proven to work to eliminate MAP infections and put Crohn's patients into remission and those treatments are now in the late stages of clinical trial.

There are also promising treatment strategies like FMT and the as yet untrialled Crohn's MAP Vaccine which could provide a breakthrough cure.

What I do agree about, is that mainstream doctors, the people you meet regularly who make a healthy living out of giving you expensive and often dangerous and toxic medication to "maintain" your health, those people, they NEVER talk about the cause and potential cures. I wonder why??
 

Scipio

Well-known member
Location
San Diego
"Similarly, there have been treatment strategies that have proven to work to eliminate MAP infections and put Crohn's patients into remission and those treatments are now in the late stages of clinical trial."


Wow, that's some "cure" in the clinical trial. Looking at their trial in a little more detail:

https://clinicaltrials.gov/ct2/show/NCT01951326?term=RHB-104&rank=2

...we see that their primary endpoint for that trial, in other words their definition of success, is achievement of a CDAI score of <150. It's informative to note that the original paper that devised the CDAI score called a patient with a score of <150 as having a generally better prognosis. It said nothing about that being a cure.

Using an online CDAI calculator you can easily see what combination of Crohn's symptoms you can have and still score less than 150:

http://www.ibdjohn.com/cdai/

For example, you could be having 20 liquid stools/week, plus be suffering moderate daily abdominal pain, plus have a general well being rated Poor, plus currently taking opiates for diarrhea control, with a normal hematocrit and weight, and that would still add up to a CDAI score of only 114. Well under their success cutoff of 150.

So if they are going rate a quality of life that lousy as a successful "cure," then sure, "curing" Crohn's is definitely within reach. But that level of symptoms just sounds to me like another level of disease management, and very mediocre one at that. Personally I am hoping for something rather better than that.
 
"Similarly, there have been treatment strategies that have proven to work to eliminate MAP infections and put Crohn's patients into remission and those treatments are now in the late stages of clinical trial."


Wow, that's some "cure" in the clinical trial. Looking at their trial in a little more detail:

https://clinicaltrials.gov/ct2/show/NCT01951326?term=RHB-104&rank=2

...we see that their primary endpoint for that trial, in other words their definition of success, is achievement of a CDAI score of <150. It's informative to note that the original paper that devised the CDAI score called a patient with a score of <150 as having a generally better prognosis. It said nothing about that being a cure.

Using an online CDAI calculator you can easily see what combination of Crohn's symptoms you can have and still score less than 150:

http://www.ibdjohn.com/cdai/

For example, you could be having 20 liquid stools/week, plus be suffering moderate daily abdominal pain, plus have a general well being rated Poor, plus currently taking opiates for diarrhea control, with a normal hematocrit and weight, and that would still add up to a CDAI score of only 114. Well under their success cutoff of 150.

So if they are going rate a quality of life that lousy as a successful "cure," then sure, "curing" Crohn's is definitely within reach. But that level of symptoms just sounds to me like another level of disease management, and very mediocre one at that. Personally I am hoping for something rather better than that.
This is a very pertinent point. Many clinical trials use cut offs that like and it is very frustrating to see what they consider "remission" and "marked improvement".
 
I think the term "cure" isn't used yet for Crohn's or IBD as the mechanism and especially causes for inflammation are still unclear.
If you don't know what to fight exactly, how can you fight it long term? Probably that's the whole dilemma.
Lately, the understanding about the mechanisms (barrier function doesn't work properly) gets more and more detailed but bear in mind that drug research always lacks behind latest research findings (read about 10 years or something).
 
I'm someone in the pessimistic camp. With the current heal care system we have I doubt there will be a cure. Hope I'm of course wrong with that mention. My poor views of the medical field and research came about in large part from reading a good deal on our western health care system.

I suppose as an example, with seeing the mention on cancer treatments, there are some who make good cases I feel that little progress has been made in fighting and curing cancer. Cancer cure rates are based upon time lived after treatment starts. From my understanding each cancer has a treatment life span. If for example a cancer is expected to have a 3 year life expectancy, if a person lives longer than 3 years the person can be declared cured. Then you get into the games played with that, when the cancer is believed to have developed, treatment started, and such. There is also the changing definition of what cancer is.

I bring this up too in that I've seen doctors complain about the emotions cancer research brings. From time to time some one will complain that to much money is being spent on cancer research with little benefit seen. Often when that happens, someone will bring up a child that has cancer, which is obviously tragic, saying much more cancer funds are needed to find a cure. This reaches the press, which then results in a mad scramble by health officials and politicians to increase cancer funding. That increased funding it is said comes at the expense of funding research for other diseases.

Not all is lost I feel though. It wouldn't surprise me, and if we are lucky, if a cure for different IBD conditions has been found in the past, and overlooked, or involved in a political medical fight that caused the research to be shunned.

Maybe as an example of that, for cancer, of late out of interest I've been reading about the work of English researcher John Beard. Over 100 years ago he proposed that cancer tissue was indistinguishable from mammalian placenta tissue. His ideas were thought well of at the time. Dr Beard was nominated for a Nobel Prize. His ideas to fight cancer were tried, and found to work against cancers. Eventually though he became bogged down in political fights. As time went on, his ideas were overlooked in particular when the famous Madam Currie proposed that radiation could easily cure cancer.

What ever the cause and cure for IBD conditions are, I imagine there to be two parts, a cure for the reaction, pathogen, digestive enzyme issue, etc, and the second part being healing. Our digestive tracts can be overly beat up, and humans heal poorly compared to most other animals.

And while it is on my mind, a book on healing and Dr. Beards cancer ideas can be read in Dr. Jerry Tennant's book. I don't agree with everything mentioned, but have found it a nice read. i'm hoping the ideas pan out.

Healing is Voltage: Cancer's On/Off Switches: Polarity

https://www.amazon.com/Healing-Voltage-Cancers-Switches-Polarity/dp/1515055558
 
What I do agree about, is that mainstream doctors, the people you meet regularly who make a healthy living out of giving you expensive and often dangerous and toxic medication to "maintain" your health, those people, they NEVER talk about the cause and potential cures. I wonder why??
One reason is, that's not a doctor's job job they are not scientists. Scientists explain and experiment, doctors diagnose(kind of an explanation) and treat, and experiment as little as possible, they rely on science to make their decisions.
 
One reason is, that's not a doctor's job job they are not scientists. Scientists explain and experiment, doctors diagnose(kind of an explanation) and treat, and experiment as little as possible, they rely on science to make their decisions.
They are also professionals and should be taking a professional interest in the scientific progress in treating the disease(s) they are dealing with. If all they are doing is handing out treatments from a limited menu, with no real skill or thought, then being a doctor is reduced to being a robot and can be automated away. I understand your point, but it is only true is your reduce people in front line medicine to automatons.
 
There is little profit in a cure vs. managing a disease. Thus most research is directed towards managing with something you can patent (like a synthesized chemical/biologic). The main research focus is to suppress the immune system instead of looking at why the immune system of IBD patients got out of wack(disbiosysis of microbiome, additives/chemicals in food /water supply, etc.) I'm in the research field and am jaded against scientists and "experts". Doctors are even worse, a lot of latest research information they receive from pharmaceutical reps(which of course is bias to their drugs). Sorry, I've had bad experiences with some doctors and their god-complexes(that they know everything, you are a mere peon and you must follow them blindly). I stopped going to one because she had to disclose on her webpage that she receives $50,000 a year from AbbieVe for "consulting on Humira"
 
"Similarly, there have been treatment strategies that have proven to work to eliminate MAP infections and put Crohn's patients into remission and those treatments are now in the late stages of clinical trial."


Wow, that's some "cure" in the clinical trial. Looking at their trial in a little more detail:

https://clinicaltrials.gov/ct2/show/NCT01951326?term=RHB-104&rank=2

...we see that their primary endpoint for that trial, in other words their definition of success, is achievement of a CDAI score of <150. It's informative to note that the original paper that devised the CDAI score called a patient with a score of <150 as having a generally better prognosis. It said nothing about that being a cure.

Using an online CDAI calculator you can easily see what combination of Crohn's symptoms you can have and still score less than 150:

http://www.ibdjohn.com/cdai/

For example, you could be having 20 liquid stools/week, plus be suffering moderate daily abdominal pain, plus have a general well being rated Poor, plus currently taking opiates for diarrhea control, with a normal hematocrit and weight, and that would still add up to a CDAI score of only 114. Well under their success cutoff of 150.

So if they are going rate a quality of life that lousy as a successful "cure," then sure, "curing" Crohn's is definitely within reach. But that level of symptoms just sounds to me like another level of disease management, and very mediocre one at that. Personally I am hoping for something rather better than that.

I think you are attaching too much importance to the CDAI score and not understanding enough of the basic science of the trial. I am sure their target CDAI scores are typical of any Crohn's treatment which is considered a success. If you want to look at the data, compare the treatment to infliximab.

RHB104 is a an antibiotic therapy targeted at eliminating MAP, which it is proven to kill. There are people on this forum, who have taken the same antibiotic combination and have been in long term remission. Intracellular mycobacterial infections, particularly ones that invade your macrophages are very, very difficult to eliminate. This does not invalidate talking about this treatment as a cure however, as it is targeting the underlying cause.
 
I'm a bit skeptical about the amount of money actually going to research to find a cure. Non profit organizations that receive generous donations for the main reason of research, it's mostly going towards other expenses. The president of a well known organization is receiving $600k in salary a year and that's horrible. The only way to find a cure is to learn exactly where the donations are going and what is the research in detail. Tax documents of not for profit organizations legally are public to view and posted on their website. $600k is a ridiculous amount of donation money for one salary.
 
In the six years since I was diagnosed great strides have been made towards a cure. Anti-MAP therapy - then considered to be cowboy medicine - in now going mainstream and is the subject of the Redhill trials; anti-MAP vaccine trials in London; the Dietzia probiotic has proven effective in cattle infected with MAP causing Johne's disease and trials are underway in Sydney; and fecal transplants in some cases are proving effective.

After years of stagnation I believe we are on the verge of a cure.
 
For me personally: I find it depressing. I would love a cure but I prefer not to count on there being on in my lifetime because I predict I will be disappointed. I would rather try for remission possibly which I know can happen (whether it can happen for me is a whole different story but I digress).

Basically I feel like holding out for a cure is putting my life on hold. I have so many thing I want to do and (again for me personally) if I felt strongly in a cure I would want to 'wait' for the cure before really living my life.

It's hard to explain but that's my line of thinking.
Thumping good answer!
 

Scipio

Well-known member
Location
San Diego
I think you are attaching too much importance to the CDAI score and not understanding enough of the basic science of the trial. I am sure their target CDAI scores are typical of any Crohn's treatment which is considered a success. If you want to look at the data, compare the treatment to infliximab.

RHB104 is a an antibiotic therapy targeted at eliminating MAP, which it is proven to kill. There are people on this forum, who have taken the same antibiotic combination and have been in long term remission. Intracellular mycobacterial infections, particularly ones that invade your macrophages are very, very difficult to eliminate. This does not invalidate talking about this treatment as a cure however, as it is targeting the underlying cause.
I focus on the CDAI score only because the anti-MAP clinical trial focuses on it. It is their primary endpoint - their main measure of success in the trial.

If at the end of their trial they prove that they have successfully wiped out the MAP infection but left most of the patients still living fairly miserable lives due to continued Crohn's symptoms (as measured by CDAI), then that's a "cure" only in the most technical sense. Their trial is designed to allow them claim success well short of actually resolving the symptoms.

If they want to claim a real cure instead of a technical one they are going to have do a lot better than that. With the symptom bar set that low I'd say that if the anti-MAP therapy is successful it will at best be another form of disease management. I will welcome it as such. We need all the management tools we can get. But I question whether very many Crohn's patients still suffering from a host of post-MAP therapy Crohn's symptoms are going to regard themselves as "cured."
 
Inflammatory diseases are benefiting from the synergies of research across a broad spectrum of conditions, including Alzheimer's and Parkinson's, various cancers, RA, pso, IBD. Immunotherapy research is hot right now. Our understanding of cytokine and cell signalling is improving vastly each year. Massive genetic databases are coming online with some pretty impressive improvements in data mining. The global community of medical researchers is growing each year, not just in the West.

When a possible cure is at hand, you can bet that big pharma will jump on it. They know how to price a drug that cures you so that it has returns similar to maintenance therapies.

I think there are many positive signals pointing to a possible cure, or at least, highly effective treatment, in the next 8-10 years. Not just for Crohn's, but for many other conditions and diseases as well.

My 2 cents (or pence, if you prefer)...
 

Scipio

Well-known member
Location
San Diego

"When a possible cure is at hand, you can bet that big pharma will jump on it. They know how to price a drug that cures you so that it has returns similar to maintenance therapies."



I agree. I've never bought those conspiracy theories that drug companies are deliberately suppressing cures in order to keep people suffering and buying their medicines longer. Not that I think that pharma companies are kind-hearted charities. Not at all. But if they can see their way to a cure for some disease they will go for it - and will charge an incredibly high price for it when they succeed. The modern drugs that cure HepC are a perfect example. They've made a lot more money selling the new miracle cures than they ever did selling the prior chronic HCV management drugs.
 
I focus on the CDAI score only because the anti-MAP clinical trial focuses on it. It is their primary endpoint - their main measure of success in the trial.
I don't agree. The CDAI scores are the conventional way of providing an objective scale for comparing treatment efficacy. There is a difference between the set up of the trial and what people really want and expect to achieve. Right now, we need AMAT treatments to be moved into the mainstream and the most effective way to do that is prove that it is at least as effective as any other already approved therapy out there. If you don't like their target CDAI scores, look at what the other treatment options you are being offered achieved in trial!
 
I think defining the word "cure" is subjective to the person. I'd be happy without a cure so long as a treatment came along that got me back to 100% health, mochas the same as a cancer patient would be happy with simply living a long life with a treatment that suppressed cancer, without actually "curing" it. From my perspective what they define as "cure" would ultimately be gene therapy.

CDAI scores are also much cheaper than endoscopic/CT/barium follow through. Very few clinical trials in IBD do that. The mongersen trial is one - they are almost ignoring CDAI completely from what I'm told by a colleague working one of the trial centres.
 
I think you are attaching too much importance to the CDAI score and not understanding enough of the basic science of the trial. I am sure their target CDAI scores are typical of any Crohn's treatment which is considered a success. If you want to look at the data, compare the treatment to infliximab.

RHB104 is a an antibiotic therapy targeted at eliminating MAP, which it is proven to kill. There are people on this forum, who have taken the same antibiotic combination and have been in long term remission. Intracellular mycobacterial infections, particularly ones that invade your macrophages are very, very difficult to eliminate. This does not invalidate talking about this treatment as a cure however, as it is targeting the underlying cause.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725371/

I think Scipio makes a valid point, and the link I provide is evidence that this concern is extended into the field.

I think Scipio's understanding of the "basic science" is good enough, for someone who is neither a doctor nor a molecular biologist, epidemiologist, clinical trial associate etc, but a patient like us all, as my girlfriend says of me, "a patient impatient for good health to come along"...
 

Scipio

Well-known member
Location
San Diego
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2725371/

I think Scipio makes a valid point, and the link I provide is evidence that this concern is extended into the field.

I think Scipio's understanding of the "basic science" is good enough, for someone who is neither a doctor nor a molecular biologist, epidemiologist, clinical trial associate etc, but a patient like us all, as my girlfriend says of me, "a patient impatient for good health to come along"...
Thanks SauceySciency. I preferred the discussion to be about the science rather than about me, but as a point of clarification I'd like to say that in addition to being a Crohn's patient I am also a biomedical scientist with a PhD in Immunology and 30 years experience working in biotech R&D, including for the last 10 years designing and conducting clinical trials. So I hope my understanding of the science is good enough despite JMC's dismissal of it.

Because of my current job I spend a lot of time looking at and evaluating clinical trial designs. And while I have not seen the full, detailed protocol, it's pretty clear from the summary on clinicaltrials.gov that this MAP trial is designed much more to allow the sponsors to claim "success" (as defined by CDAI <150) than it is to achieve a "cure" - as defined by me as stopping the disease and returning the patients to a state of health reasonably similar to what they enjoyed prior to the disease onset.

Now having said that, that doesn't mean that this trial isn't an important and worthwhile step. It's clearly designed show improvement in the health of the patients due to the experimental therapy. And that's very much a worthy goal. If successful it would be important progress along the way to perhaps someday developing a cure. But as I've been saying, claiming success for a degree of progress that leaves patients still suffering significant symptoms fits the definition of disease management rather than cure.

So my bottom line is this trial may well be very important. I root for its success. But for those patients who say in effect "I'm so sick of this disease! I'm so tired of having my Crohn's merely managed. Why can't we have a real cure instead?" by its very design, this trial is unlikely to provide an answer to their lament.
 

my little penguin

Moderator
Staff member
And those results are worth $665,000, according to the Italian Medicines Agency, which agreed to reimburse for GSK’s drug. Severe combined immune deficiency is otherwise treated with risky bone marrow transplants or enzyme replacement therapies that must be taken for life and can cost more than $4 million over the course of a decade, GSK said. Strimvelis, by contrast, could be a bargain.
From
http://www.scientificamerican.com/a...ubble-boy-disease-will-cost-665-000-per-dose/

Kinda nice to see drug companies producing drugs that can "cure" other diseases
So maybe in time crohns will be next !!
 
I think we're gettign closer. To find a cure, you need a cause. If we don't even understand the cause, how can we work on curing it. I guess someone could get lucky and accidentally figure out a way to make CD go away without knowing the exact mechanism, but the most recent research seems to be directed at a cause. Especially the human MAP stuff, but you all know I'm biased to that. :)

I can tell you from my own personal journey (which was full of extreme emotional ups and downs) I secretly hoped for a cure and that I would wake up without CD one day, and these decades would be a bad dream. But to protect my psyche and be able to live my life without abject despair, I dealt with what I was given and tried to maintain health however I could find it. And then, when I thought this disease was actually going to win, I found AMAT - and I have no more Crohn's. I never say "cure" even now, because I know my case is caused by human MAP and it's sneaky and it could get resistant and come back on me. I need to be mentally prepared for that. But I tell people who ask that this is even better than remission - I have been fully healed from Crohn's (with the medical test results as proof!) and it's like I've never had it. So maybe I'm not officially cured, but I could happily live the rest of my days like this, even if it lurks below the surface. I keep taking my meds, and I thank God for every day I have free of disease.

I truly hope everyone who suffers with this someday finds this type of healing. And I still think that there will be a cure in my lifetime, even if it's a combo of therapies for a long time. But we need a defined cause first.
 
Top