[Expez]

I just listened to the book Bad Pharma, by Ben Goldacre, which deals with this problem. The author works as a doctor and so has a bit of an inside view of how the industry does 'science' and how this affects doctors and patients.

The lack of published negative results isn't a problem unique to pharma but the drive for profits and the actual life and death outcomes makes it particular severe in this area of science, I think.

I highly recommend the book, it was both hilarious and terrifying.

[sanxiyn]

I must note that according to the linked article, "pharma’s record has been markedly better than that of academia and the federal government". It's academia that is not reporting results, not industry.

[hannob]

That's an illogical conclusion.

Both don't always report results. Academia is worse. That doesn't make the industry good in any way.

[jcranmer]

The industry has a near-perfect report rate. Only one company missed a report (for a total of 1 missing result out of 629 trials from industry), and half of them never even reported anything late. Take out the worst two offenders, and they do better than literally every single academic and government entity. In terms of average delay, only two academic/government entities do better than any industry entity (save the two outliers).

I'm not going to claim that industry is perfect. But take a look at the graphs. It is a picture of an industry that is generally in compliance (enforcement could perhaps be stepped up), compared to academics and government who appear to believe that compliance does not apply to them.

[Amygaz]

I don’t know what problem that would solve. Academia rarely does trials that end up killing people. Unlike the whole CAR-T cell therapy. Companies like Juno killed almost 50% of their patient, before the FDA halted their trial, which was allowed to resume later, and kill more people. Granted they where going to die anyway. Still the like of Hans Bishop who us held as a hero in the industry because he sold his company for billions, while the product will never be approved. Even if were to be, it would sit on a shelf because it’s too expensive. So much for transparency...

(Edited some typos)

[jcims]

I’m standing right now near the window on the 20th floor of a cancer center, typing this on my phone while my wife sleeps 10 feet from me.

This is high stakes medicine, yet the current environment has the docs on this floor terrified of doing anything that isn’t in the standard of care runbook. My wife has had elevated blood glucose levels for six months, which is not good when you’re fighting cancer, yet i can’t get anyone to treat it because there’s no clinical evidence that managing glucose levels for her specific type of cancer has any benefit.

Guess what. Nobody’s doing that trial any time soon. Meanwhile there are thousands of diabetics managing their blood glucose while fighting cancer and there is endless material available demonstrating that cancer cells thrive in hyperglycemic environments.

So, i don’t know anything about Juno, they could be sociopaths. But i have no issues with high risk attempts as long as the patients are informed and there are ethical standards for transparency. At least they are trying.

[endothrowho333]

I sympathise with your wife's predicament. Good or sub-par treatment, doctors still get paid.

If you're not opposed to eschewing professional recommendations to not complicate treatment, there are two things that may be worth looking into:

1). Metformin: Helps control blood glucose by significantly increasing sensitivity of insulin receptors, i.e more glucose is shuttled out of the blood stream per insulin molecule. Not scheduled and very cheap. Also trials are being done on it for cancer prevention -- exactly because of Warburg's phenomenon (cancer cells and glucose)

2). Ketosis: Hit or miss. By abstaining from carbohydrate consumption, the result should be drastically reduced blood glucose levels. However, in some people (e.g type 2 diabetics) it may elevate blood glucose due to metabolic disfunction. In any case, caloric restriction in general have the effect of both increasing insulin sensitivity and decreasing blood glucose -- regardless of macronutrient profile

[sjg007]

The doctor though should be able to provide access to a clinical dietician to help think plan the diet and think through the implications. I imagine some chemo and targeted drugs could interfere with lipid metabolism and there is also a risk of acidosis. So I would ask the doctor. It will probably be a case of "we don't know" but diet is basically the one variable under your control besides listening to the doctor.

There's one paper on it from a completed clinical trial. https://www.ncbi.nlm.nih.gov/pubmed/27525031?dopt=Abstract

Also clinical trials using metaformin during cancer treatment. You might consider enrolling in one of these if it is feasible.

https://www.cancer.gov/about-cancer/treatment/clinical-trial...

[jcims]

Awesome suggestions thank you. I had to go to Care Oncology to get a metformin prescription which just arrived at the house today.

I tried going the A1C route to justify intervention but anemia and transfusions both push A1C low. I also just got a prescription for a Freestyle Libre to monitor blood glucose.

We’ve never got quite to the level of ketogenic but have tried focusing on fats and proteins for calories and keeping carbs between 50-100/day.

[sanxiyn]

> while the product will never be approved

I must point out that some CAR-T cell therapy is already approved. I am not sure about Juno's particular candidate, but it isn't obviously insane that it was sold for billions.

[sanxiyn]

Of course it makes industry better than academia for this particular case. Do not think in terms of good or bad, think in terms of better or worse.

[tracker1]

How often are private companies paying at least in part for this research... also, since academia is abusing the patent system as much as everyone else, it's kind of expected.

[CodeWriter23]

How many studies from academia are actually industry-funded studies by proxy? Given all the pharma-funding of academia, I suspect the answer is non-zero.

[refurb]

If they were industry funded, then they would fall under “industry” in terms of reporting.

These are NIH grants to academia - industry is not involved.

[Angostura]

Don’t forget to support Ben’s campaign to change this. https://www.alltrials.net/

[ekianjo]

There is also an opportunity for public databases of patient outcomes (post marketing) that we would all greatly benefit from. A lot of that data is still discussed behind closed doors and authorities are also to blame because it is their prerogative to force data to be open if they wish to.

[pintxo]

We are working on it, but financing seems to be tricky for such an endeavor.

[jcims]

Sounds like a FUD magnet but I agree there would be major upside. Edit: To clarify, publishing individual patient outcomes publicly could pretty easily be spun as a privacy risk to trial participants and/or have a chilling effect on enrollment.

I’m personally invested in seeing something like this happen but if not approached defensively it could be vulnerable to getting shot down and made an example of.

[avip]

I'd also recommend his TED talks which are really amusing and educating.

https://www.ted.com/talks/ben_goldacre_battling_bad_science

https://www.ted.com/talks/ben_goldacre_what_doctors_don_t_kn...

[rjmunro]

The article states "based on data collected from the TrialsTracker website of the University of Oxford", which is Ben Goldacre's project.