[detst]

While I can't really disagree with you, I don't think it's crazy to think that there are many influential people and organizations that have a strong interest in seeing that we avoid potential cures for common diseases. As such, I don't think this type of reaction is necessarily based largely in ignorance.

Then again, I'm largely ignorant on this subject so I'm certainly not making any accusations in this case.

[karsa]

One such case is of Barry Marshall and H.Pylori, he was awarded the nobel price in 2005 for discovering the cure to ulcers, (antibiotics) but he first discovered the cure in 1983 and after about 10 years of 'trying' to convince the medical community of which (Glaxo who was dominant in that market) was making 90% of their profits from Zantac (an anti acid treatment) - (known inside as the 'Zantac years'), they were accused of thwarting his discovery. Tired of the lack of interest, in about 1992 he did a live experiment on himself by swallowing a wapping dose of H.pylori and induced an ulcer, then proceeded to cure this with a course of antibiotics. He did this in the glare of the media and thereby changed the course of treatment worldwide for ulcers... How many would do that?

However, I agree with the point though that too many HNers often seem to be naive about the larger picture which I guess we could all be accused of in some way.

[rsheridan6]

Barry Marshall did not have to convince Glaxo Kline Smith. He had to convince other doctors and scientists. I don't believe that companies can often keep genies in bottles, but dogma and groupthink is another matter.

[karsa]

He was also ignored totally by all the main stream publications, it was later alleged they had close ties to Glaxo and the editors were fully aware of the significance the impact would have had on Glaxo.

http://www.orc.ru/~yur77/pylori.htm

[rsheridan6]

The article claims, without evidence, that Nature and Science didn't publish Marshall because of ties with Glaxo. Even if that's true, there are a lot of other journals out there. Are they ALL in Glaxos pocket?

I doubt it. But they're all reviewed by his peers, who made a living by giving endoscopies and prescriptions to patients every year or so.

[alextp]

Peer review is usually by scientist peers, and not professional peers. I doubt that most academic researchers in medicine were prescribing anything, really.

[rsheridan6]

MDs do research all the time. Some MDs are also phDs. Marshall himself was a doctor/researcher.

[JosefK]

This story seems to have at least the air of exaggeration around it. See http://www.csicop.org/si/show/bacteria_ulcers_and_ostracism_... for the history around the adoption of H. Pylori hypothesis.

[karsa]

There is nonsense in the above article:

"Perhaps more important was that the subject, who was none other than Marshall himself, failed to develop an ulcer. Note also that the disease resolved without treatment."

This story suggest that he didn't get an ulcer (but he did get all the first symptoms) and that he didn't treat it with (antibiotics) which he did and which eventually cured his own symptoms (and nearly cost him his marriage as his wife left him shortly after doing this).

http://www.intelihealth.com/IH/ihtIH/E/8270/22025/189048.htm...

"As with many tales of dedicated discoverers, you marvel at the tolerance of the family. When Marshall conducted his experiment on himself, he and his wife Ariadne, a psychologist, had four children aged between 10 and 3. He didn't inform Ariadne, or any of his colleagues, about what he was doing, mainly because he knew they'd object.

“I'm a selfish so-and-so”

“A few days after taking the bacteria I began to feel this heavy fullness after eating, and then on day five the vomiting started. One of the reasons I didn't tell my wife about it was that she had whiplash from a car accident. There was a lot of chaos in the family and in the middle of this each morning I would wake before dawn and run to the toilet to vomit. I had bad breath and I looked terrible. You have to admit I'm a selfish so-and-so to even go ahead with the experiment.”

Ten days after drinking the bacteria, Marshall had an endoscopy and other tests to show that his previously bug-free stomach was thoroughly infected and that he was showing the same signs as his patients.

“At that point I couldn't restrain myself; I had to tell the wife. She was speechless.” He laughs. “But it's easier to ask for forgiveness than permission.” She insisted that he took antibiotics to clear up the infection straight away, though Marshall wanted to continue until he had a full-blown ulcer."

http://www.timesonline.co.uk/tol/life_and_style/health/artic...

Also gastronome enteritis and related diseases was responsible for over 5k deaths (globally) -- a week -- during the period it was known but not accepted 1983 - 1997.

http://www.aips.net.au/97.html

"Marshall swallowed a culture of the bacterium. A week later, he began suffering acute symptoms of gastritis, and biopsies revealed that he had developed both infection with H. pylori and severe acute gastritis. Fortunately, the sequel was a successful case of "Physician, heal thyself"!

further:

"At this stage, bismuth subcitrate was commonly used to treat ulcers, although it was uncertain how the drug worked. Marshall surmised that it might kill the H. pylori bacteria, and he subsequently discovered that a combination of bismuth with antibiotics completely eradicated the bacteria. He then set out to test the hypothesis that elimination of H. pylori could result in a permanent cure of gastric ulcer."

"From 1985 to 1987, Warren and Marshall studied the use of antibiotics as treatment for ulcer. Their finding that 80% of patients were permanently cured of their ulcer if H. pylori were eradicated, proved a landmark in clinical gastroenterology practice. It resulted in a complete reassessment of ulcer treatment, and this therapy is now accepted as an essential part of the management of ulcer disease."

[anamax]

> I don't think it's crazy to think that there are many influential people and organizations that have a strong interest in seeing that we avoid potential cures for common diseases.

I do.

How about some evidence show that this has happened more than a handful of times in the last 20 years?

Note a company refusing to fund a competitor is NOT evidence of "avoid potential cure". Heck - a company refusing to fund something for eany reason is not evidence.

The act that you need to document must be someone going out of their way to block something, not merely refusing to help.

[detst]

I was simply making a point that there are people that have a strong financial interest that a cure would compromise. That's simply a fact. I didn't go any further than that because I'm sure I'm less qualified to do that than many others here.

My cynical side might think that there are people that would go a long way to protect their financial interests.

[rsheridan6]

I'm sure the shareholders of Eli Lilly, Novo Nordisk and others would like to squelch a cure for diabetes to protect their markets, just like any established company would like to squelch disruptive technologies. So what? What are they going to do about it if some startup cures diabetes?

That's all you really need to know about any story about big, evil companies supposedly suppressing new technology.

[todayiamme]

You seem to have assumed something over here. That,

a) A Start-Up has that type of money b) They'll be willing to invest in something so risky.

As others have pointed out there are StartUps with the money, but somehow we still don't hear about orphan drugs with potential to make it burst onto the scene. Why not? I think that the second factor is more at play over here. Ultimately it comes down to the cost vs. benefit analysis.

Imagine this you are a VC with a $100 mil. to burn will you support a long and twisted development process of something that might not even work at the end?

You might argue that the benefit is that you might become the up and coming Google of pharma, but try telling that to any smart VC.

This is why we need something more than a profit based industry for something that forms the basis of our society. On one hand people talk about freedom, and especially how it's related to the freedom of the markets, and on the other you trap them with the very failings of their bodies.

Perhaps, I am wrong, but this is something that we all need to think about. What do we value more as a species money or wealth? I wish I knew the answer.

[rsheridan6]

>As others have pointed out there are StartUps with the money, but somehow we still don't hear about orphan drugs with potential to make it burst onto the scene.

Imatinib. It was developed as a cure for CML, a disease which only affects a few thousand people in the US. That's just the most notable. From wikipedia's article about orphan drugs,

"In the USA, from January 1983 to June 2004, a total of 1,129 different orphan drug designations have been granted by the Office of Orphan Products Development (OOPD) and 249 orphan drugs have received marketing authorization."

>Imagine this you are a VC with a $100 mil. to burn will you support a long and twisted development process of something that might not even work at the end?

The fact that pharmaceutical startups exist (google pharmaceutical startup or something like that and you'll find plenty of them) show that VCs, or whoever it is who invests in them, have different ideas about risk than you do.

[todayiamme]

>"In the USA, from January 1983 to June 2004, a total of 1,129 different orphan drug designations have been granted by the Office of Orphan Products Development (OOPD) and 249 orphan drugs have received marketing authorization."

Thanks. I realize my mistake now. I meant it as in how many new companies try something as risky as making an orphan drug? I shouldn't have leaped in with a bad example without checking it more thoroughly first.

Sorry.

>The fact that pharmaceutical startups exist (google pharmaceutical startup or something like that and you'll find plenty of them) show that VCs, or whoever it is who invests in them, have different ideas about risk than you do.

My point over here was that they fund them, but they might not fund something as risky as stem cell therapy. As far as orphan drugs and StartUps go; is there an data freely available online on the composition of companies that market orphan drugs?

Perhaps that would be more revealing?

(I found this site from the wiki article http://www.urchpublishing.com/publications/discovery__rd/orp... , but it's paid)

[rsheridan6]

Here's a company that was started in 2006 with the intention of treating rare diseases: http://www.atonrx.com/background.php

They were just bought out for $318M. Not bad.

Treatments for rare diseases actually have fewer regulatory hurdles because of the Orphan Drug Act, which basically says that there's a lower standard of evidence for drugs that treat rare diseases.

>My point over here was that they fund them, but they might not fund something as risky as stem cell therapy.

Maybe not, but maybe that's a good thing, for reasons carbocation stated.

>is there an data freely available online on the composition of companies that market orphan drugs?

There's a list of drugs here (well, do a search on an empty string and you get a list) and the companies who make them, but it's not exactly predigested.

http://www.accessdata.fda.gov/scripts/opdlisting/oopd/index....