[jforman]

Every disease is a different beast, and biology is very hard to tame. We've thrown probably trillions of dollars at cancer over the past few decades, and only in the past few years, with immuno-oncology, has there been any real hope of progress toward broad cures (there was a heady moment after Gleevec, too, but that turned out to be the exception rather than the rule).

There was just a huge wave of Alzheimer's treatments that people were so hopeful might make any dent in the disease. They all failed, apparently because the breakthrough we thought we had made in understanding the disease turned out to be specious. Had the drugs made ANY improvement they'd be on the market and we'd all be bitching about how pharma "likes to make bandaids rather than cures," and that would have been a disservice to the years of toil people put into these drugs.

Not every pharma actor is a good actor. But overall the space is mostly filled with scientists and doctors trying to make people healthier, and mostly failing.

[tinokid]

>overall the space is mostly filled with scientists and doctors trying to make people healthier, and mostly failing.

Failing flat, i.e., not making people healthier but not making them sicker either, is not a problem. Failing down, i.e. trying to make people healthier but making them sicker instead, is and has been a huge problem with modern medicine, even when done with the best of intentions.

Yes, the past century has seen great progress in neutralizing infectious disease (though it is likely that the HIV epidemic itself was an "own goal" of basically iatrogenic origin [1]), but nearly everything else, including cancer, is a wash.

Unfortunately, a sober analysis of the benefits and harms of actors in the medical space cannot afford to give much credit for effort or good intentions.

[1] http://science.sciencemag.org/content/346/6205/21

[xyhopguy]

To be fair though, we are really close with cancer. Like really really close. cfDNA is revolutionary for our measurements. Crispr is revolutionary for understanding. So close.

[jdale27]

To be fair though, we are really close with cancer. Like really really close. cfDNA is revolutionary for our measurements. Crispr is revolutionary for understanding. So close.

Just curious, on what do you base this opinion? Do you work in cancer research, or another biomedical field? These tools will definitely advance our understanding, but my feeling (as someone who worked in genomics for several years, though not in cancer) is that if you think "we are really close" to curing cancer (pardon me if I misinterpreted your statement) with these technologies, you are buying into a lot of hype around them. It's natural that that hype exists, though, given how much VC money is being poured into this area right now.

[xyhopguy]

can't say too much but I work on the stats side of liquid biopsy. Been in genomics (on the cs side) for the last 6 years. the encouring part to me is 1) we can predict the effect of a treatment given the tumors clonal composition, 2) we can test the effects of drugs much more quickly thx to crispr 3) easily profile a tumors composition with cfDNA.

1 and 3 imply we may be able to drive clonal evolution to a place where we can indefinitely treat patients. 2 gives us a lot more options.

[Fomite]

Note that it appears CRISPR will not be easy to implement in humans, thanks to some pre-existing immunities from frequently colonizing bacteria.

[xyhopguy]

Personally I see crispr more as a tool for functional genomics. It took like two decades to knockout all pairs of genes in yeast. With crispr I've seen people do it in a single experiment.

[DoreenMichele]

My father had Alzheimer's. He lived another 3 years after doctors announced he had six months left because my mom was a devoted wife who quit her job to take care of him.

He also survived colon cancer in his late 60s for the same reason and I flew out and took care of my sister after her first mastectomy with her first round of cancer. The doctors attributed my father's survival after they wrote him off for dead to my mother's care. They interviewed her on tape and changed the practices at their clinic based on what she had to say. From what I gather, two different cancer clinics began offering patients German Penaten cream to help their surgical scars heal because that was why my father's 16 inch surgical scar did so well.

I have zero reason to believe you are correct. There are some differences between different diseases. But my life's experience suggests that a) getting fed right b) getting proper care from someone who actually cares about you and c) adequate control over your environment are pretty universal beneficial, regardless of your exact diagnosis.

(But I'm just a woman, so not likely to be listened to. Yes, I'm feeling pretty bitter about that at the moment.)

[jforman]

Home care is important, but technology can make major impacts, too.

Here is a Kaplan-Meier curve for statins:

http://www.bmj.com/content/bmj/337/bmj.a2423/F2.large.jpg?wi...

That is a lot of life that these drugs have given a whole lot of people.

AIDS is largely a managed disease now, thanks to therapeutics, starting with AZT.

Steve Jobs thought that he needed better nutrition to manage his disease, and he was wrong. He had a chance of living a much longer life had he let medicine intervene earlier.

(And I had no idea what your gender was until you mentioned it. I'm sorry that you don't feel heard.)

[belorn]

Getting familiar food regularly, having someone who genuinely cares about you, and having control of your environment are all medically recognized (with peer reviewed research to support it) methods to reduce stress and stress hormones.

And stress is a significant factor in mortality rates. Its a major predictor for long life and health. It impacts metabolism, pain reception and recovery rates, and reduced stress in surgical patients is a universal good regardless of diagnosis. Its not a cure. It won't stop an infection or cure cancer, but the benefits are very real and has a good bit of research behind it.

[TeMPOraL]

> But my life's experience suggests that a) getting fed right b) getting proper care from someone who actually cares about you and c) adequate control over your environment are pretty universal beneficial, regardless of your exact diagnosis.

Not sure what your point is. Those things are helpful, can extend healthspan a bit, but they're also completely orthogonal to medicine, and are not solutions.

[DoreenMichele]

Wow, completely orthogonal. So, curing Rickets and Scurvy by identifying the nutritional deficiencies behind them us totally not an advance in medicine.

This explains a lot of what is wrong with medicine today. It was different when I was growing up. Doctors would treat all the kids in the family at one time so some infection didn't simply get passed around endlessly. We seem to have stopped doing that, and we wonder why drug resistance is such a problem.

[TeMPOraL]

I meant that in context of your entire comment tree; e.g. things like:

> Things that are actually health promoting, like having a full-time parent to care for the kids and primary breadwinner, eating right, exercise etc are boring and don't make VCs rich.

Correct me if I'm wrong, but I see you implying something like "why do medicine, if we could eat less 'junk food', work less and smile more instead".

> curing Rickets and Scurvy by identifying the nutritional deficiencies behind then us totally not an advance in medicine

That's indeed the domain of medicine. Which will tell you, "you need more nutrient $X in your diet" as a solution to the problem, instead of "eat healthier" (for values of 'healthier' determined by current fitness fashion).

[DoreenMichele]

That's indeed the domain of medicine. Which will tell you, "you need more nutrient $X in your diet" as a solution to the problem, instead of "eat healthier" (for values of 'healthier' determined by current fitness fashion).

That sounds just really arbitrarily personally hostile towards me.

I have gone through multiple blogs in which I have tried to lay out specific nutritional recommendations for people with CF. The few people who have tried it have gotten results.

I have done everything within my own power to try to elucidate specifics no different from the examples of Rickets and Scurvy being caused by nutritional deficiencies. But it does not get taken seriously and I can find no path forward for that, and not due to lack of trying. One woman said she would write a paper with me on the subject, then arbitrarily changed her mind. Her son died of CF. She was a smoker. I don't think she really wants to admit that her smoking helped kill him. She wants to find a pill that makes everything OK and absolves whatever guilt she carries.

The CF community is not interested in what I am doing. So there probably is no path forward here. I fully expect to die in obscurity having never accomplished anything at all with my life.

But this arbitrary validation of nutrition as medicine, unless I am doing it and then it is somehow hokum, is just one of the craziest things I have ever seen on HN.

[TeMPOraL]

> But this arbitrary validation of nutrition as medicine, unless I am doing it and then it is somehow hokum, is just one of the craziest things I have ever seen on HN.

Yeah, nutrition as in "you need more vitamin C, or else scurvy", not as in "eat salads, drink no coffee, consume only 'natural', no processed".

Anyway, you're talking it personally way beyond what was intended. Nobody is discounting your opinions because you're you, or because you're a woman (in fact, people were probably positively biased towards them by the virtue of your karma score on the previous HN account, before you ditched it). You started your subthread here with, "Color me skeptical", towards the outcome of sponsoring biomedical R&D, based on your experience with one form of one disease that (you think) you figured out how to manage with healthy lifestyle. But there are plenty other forms of that disease, and plenty other diseases, and you can't cure them all by healthy lifestyle - and most importantly, people are not living healthy lifestyles for some reasons - reasons that are fully orthogonal to what medical research is doing.

Anyway, I'm going to drop it, as I'm no wordsmith, and 'dokein happened to make the same point I want to make much better than I ever could.

[dragonwriter]

> But this arbitrary validation of nutrition as medicine, unless I am doing it and then it is somehow hokum, is just one of the craziest things I have ever seen on HN.

Every nutrition as medicine claim on HN is highly controversial. Sure, there's some people that tend to vocally buy into even the most unscientific of them usually people that are personally invested in the claims made, which are often quite general in applicability. I suspect the reason you see less of that for yours isn't either a specific bias against you or anything about your particular claims except that the popular to whom they are applicable is fairly narrow. So you get the skeptics, but not the eager adopters.

[new299]

It would be useful to link to the blogs, so we can better understand what is being discussed.

But, some people on blogs trying it and then some of them saying a diet works is not really scientific. What would be needed is a larger scientific study. You can argue that such a study should be funded.

In fact, there does appear to be some scientific research, based on some quick googling [1]. If your goal is to increase the adoption diets based on those studies, then I would cite them directly. Promoting that work might work better.

[1] https://www.sciencedirect.com/science/article/pii/S156919930...

[new299]

I guess there are a few issues with this:

The first is, anecdotes are interesting, but is there data that supports this? It seems like there are too many variables, and that at home care may not help in all circumstances anyway.

Secondly, "getting proper care from someone who actually cares about you" by which I guess you mean a family member or close friend. Is not viable is many circumstances...

Finally, I guess it comes down to "what do you actually do". If it proves helpful, what can you do to promote this? Fund family member to quit their jobs to care for relations? It seems like that would be open to abuse and difficult to administer.

[DoreenMichele]

The US is on a very short list of countries that do not provide maternity leave and iirc it is the only country on that list that does not have the excuse that we are too poor and underdeveloped to afford it. We could start with just providing maternity leave as a small step forward here. It is a well proven model with lots of examples out there and not terribly open to abuse because you have to have a baby to get it.

I would be fine if we provided parental leave for both parents when a child is born. But I would be happy with just bringing the US into the 21st century and getting on the same page as basically the rest of the planet and just starting with maternity leave. I only mention parental leave because if I don't, you can guarantee someone will accuse me of something nefarious for not explicitly stating that.

[new299]

I agree that parental leave is valuable (though I'd love to see data supporting this if you have it).

But it seems like a very different issues that increasing health care outcomes in general.

[DoreenMichele]

Well, color me speechless. I don't think we have anything further to discuss.

[new299]

Your arguments don't seem to be backed by data, or any kind of objective logical reasoning. So I would agree.