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How pharmaceutical industry financial modelers think about rare diseases

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Re: How pharmaceutical industry financial modelers think about rare diseases

#121

Post by loceng »

loceng wrote: post #116
loceng wrote: post #77

Earlier quoted context omitted.

It's instances like these that I believe why the medical-pharma industrial complex isn't necessary, and likely more inefficient and soaking up more money - directing them towards profits, or other less efficiently than individuals who are passionate for a solution; yes, we need the institutions like Harvard Medical School to support these people - however the capitalism that then takes advantage of innovation through…

Glad down voting has supported healthy community discussion on HN once again. I'm glad to find out that at least the 5 people to down vote me (so far) all agree it's great that people pay so much for medications.

News just from today: "Whistleblowers: Company at heart of 97,000% drug price hike bribed doctors to boost sales" - https://www.cnn.com/2019/04/30/health/mallinckrodt-whistlebl...

Re: How pharmaceutical industry financial modelers think about rare diseases

#122

Post by burtonator »

dcx wrote: post #42

This is an impressive article and an impressive couple. From the site's about page: My name is Eric Vallabh Minikel and I’m on a lifelong quest to develop a treatment or cure for human prion diseases. I originally trained as a city planner at M.I.T. and was working as a software engineer and data analyst in the transportation sector when, in December 2011, I got some bad news. My wife and the love of my life, Sonia V…

> I have relatives who managed to convert their dad's brain cancer outcomes from a couple of months in palliative care (which the doctors were recommending) to five more mostly-good years

That's literally NOT how this works and this line of thought is VERY dangerous.

You have an N=1 sample size here.

Doctors use probability distributions when making prognosis and recommendations for treatment.

It's far more plausible that he was just an outlier.

By all means take care of your family members but you have NO idea that this behavior changed his outcome.

Correlation != causation.

Re: How pharmaceutical industry financial modelers think about rare diseases

#123

Post by modzu »

jonlucc wrote: post #66
lenticular wrote: post #51

Earlier quoted context omitted.

The criticism is more that instead of increasing sales by developing more drugs, they focus their resources on marketing instead. This makes more money for them but is bad for society.

I still don't understand why it's bad for society? It seems like this is a common point that implies something, but I can't figure out what that thing is.

well in the context of developing drugs that cure disease (esp rare ones), pharma says its so expensive to do, it costs billions to develop a drug. but if in fact it "costs" billions to "market" a drug then is that the same thing? i dont have a strong opinion on this

Re: How pharmaceutical industry financial modelers think about rare diseases

#124

Post by rscho »

dcx wrote: post #42

This is an impressive article and an impressive couple. From the site's about page: My name is Eric Vallabh Minikel and I’m on a lifelong quest to develop a treatment or cure for human prion diseases. I originally trained as a city planner at M.I.T. and was working as a software engineer and data analyst in the transportation sector when, in December 2011, I got some bad news. My wife and the love of my life, Sonia V…

Maybe... but more likely no, this is random luck.

What's sure is that you do not understand the medical system at all. I hope this poor man's family did not force him through too much suffering.

FYI clinical trials, despite what some would like you to think, are absolutely not designed to help those participating in it.

FYI 2: "average doctors" have to follow guidelines like everyone else. The "exceptional doctors" proposing "advanced new cures" are either dishonest or failed to communicate properly with their patient. It's always astonishing to me when I realize people think that practionners have such freedom in deciding their treatment plan. This is not how it works.

Re: How pharmaceutical industry financial modelers think about rare diseases

#125

Post by rdlecler1 »

dralley wrote: post #81
dcx wrote: post #42

This is an impressive article and an impressive couple. From the site's about page: My name is Eric Vallabh Minikel and I’m on a lifelong quest to develop a treatment or cure for human prion diseases. I originally trained as a city planner at M.I.T. and was working as a software engineer and data analyst in the transportation sector when, in December 2011, I got some bad news. My wife and the love of my life, Sonia V…

>For example they switched him to a ketogenic diet back when this was just starting to show results for cancer I'm curious as to how this would have an impact. Is there any research demonstrating that keto slows the development of cancer? Or hypotheses on why that would be the case?

Another factor is that cancer cells act more aberrantly under stress. Fasting (not sure if this also applies to keto) creates resources competition by which cancer cells neither compete as effectively and make theme-selves more apparent to the body’s immune system. Lot’s of anecdotal information here with some evidence but as a hypothesis with reasonable with reasonable biological justification it makes enough sense to me that I’d be personally comfortable taking some of these risks for my self or my family.

Re: How pharmaceutical industry financial modelers think about rare diseases

#126

Post by elliekelly »

cbhl wrote: post #40

Looking at these numbers, I wonder whether the FDA process is a bit too conservative with respect to safety. There were the articles yesterday about diabetics yesterday creating closed-loop feedback systems out of old insecure parts, because a FDA-certified alternative is decades out. I've heard also of folks joining studies for newer-and-better IUDs that are approved by European regulators, but need to be re-certifi…

Your comment reminded me of the (ridiculous but sadly necessary) "Sunscreen Innovation Act" passed a few years ago.[1]

U.S. financial regulators often "vet" their equivalent foreign agencies and whitelist those whose processes are sufficiently analogous and in some cases allow US entities to rely upon the work done in those whitelisted jurisdictions. I've always wondered why the FDA can't work out a similar system. If the EU has approved a drug and done all of the studies and asked all of the questions surely we don't need to do all of the same studies and ask all of the same questions just so we can approve the drug a decade later.

[1] https://en.wikipedia.org/wiki/Sunscreen_Innovation_Act

Re: How pharmaceutical industry financial modelers think about rare diseases

#127

Post by DoreenMichele »

iandanforth wrote: post #67

This is a well researched, informative and infuriating article. Within the system I cannot think of a better or more determined approach to this problem, but as this is HN I need to lay out a few points. As we mint more billionaires they are going to do an end-run around the FDA. If I were a billionaire there is no way in hell I'd wait for a standard drug trial to progress on an FDA timeline. Eventually one or more o…

Ordinary joes are already finding loopholes in the medical system, such as this article from yesterday about the popularity of old insulin pumps with an exploitable security flaw:

https://news.ycombinator.com/item?id=19781118

Eventually one or more of the ultra wealthy is going to survive a disease that government sanctioned healthcare says is incurable.

I knew a woman who used chelation to resolve issues in a child diagnosed as autistic. The world did not clamor for her story. She began finding more socially acceptable ways to describe the child that didn't ask the world to believe that a lawyer and mom had fixed the unfixable.

I have a similar story for a different condition. Nope, no one is clamoring to hear my story. Quite the contrary.

So you may find that it doesn't quite go like you think it will. A rich person might just sweep their miracle cure under the rug, claim they were "misdiagnosed" and mysteriously got better while on vacation and not admit that it was really a case of medical tourism.

There is a long history of, for example, American women from wealthy families just flying to Europe for an abortion if if it is too hard to get one here. Then poor women get back alley coat hanger abortions that leave them scarred for life because they can't afford to fly to Europe for excellent care.

Rich people who do things like that probably have the good sense to not say too much about it lest some nutjob bureaucrat try to interfere with their ability to do things like that.

Re: How pharmaceutical industry financial modelers think about rare diseases

#128

Post by bigDICK »

rdlecler1 wrote: post #125
dralley wrote: post #81

Earlier quoted context omitted.

>For example they switched him to a ketogenic diet back when this was just starting to show results for cancer I'm curious as to how this would have an impact. Is there any research demonstrating that keto slows the development of cancer? Or hypotheses on why that would be the case?

Another factor is that cancer cells act more aberrantly under stress. Fasting (not sure if this also applies to keto) creates resources competition by which cancer cells neither compete as effectively and make theme-selves more apparent to the body’s immune system. Lot’s of anecdotal information here with some evidence but as a hypothesis with reasonable with reasonable biological justification it makes enough sense…

I wouldn't expose my family to my own pet theories. I'd choose to listen to the oncologist. There is a downside to fasting as well. Removing the pleasure and normal lifestyle may isolate the patient from social interactions that involve food. Those social interactions could be really important to personal well being and staving off depression.

Re: How pharmaceutical industry financial modelers think about rare diseases

#129

Post by bigDICK »

loceng wrote: post #116
loceng wrote: post #77

Earlier quoted context omitted.

It's instances like these that I believe why the medical-pharma industrial complex isn't necessary, and likely more inefficient and soaking up more money - directing them towards profits, or other less efficiently than individuals who are passionate for a solution; yes, we need the institutions like Harvard Medical School to support these people - however the capitalism that then takes advantage of innovation through…

Glad down voting has supported healthy community discussion on HN once again. I'm glad to find out that at least the 5 people to down vote me (so far) all agree it's great that people pay so much for medications.

HN is community property. The community decides what is relevant and what is not.

Re: How pharmaceutical industry financial modelers think about rare diseases

#130

Post by DoreenMichele »

FabHK wrote: post #118
dcx wrote: post #42

This is an impressive article and an impressive couple. From the site's about page: My name is Eric Vallabh Minikel and I’m on a lifelong quest to develop a treatment or cure for human prion diseases. I originally trained as a city planner at M.I.T. and was working as a software engineer and data analyst in the transportation sector when, in December 2011, I got some bad news. My wife and the love of my life, Sonia V…

> One thing I've learned from smart family and friends about medical care is that you can sometimes improve outcomes quite a lot if you apply brains and effort. I'd be very careful with this sentiment though, because it is easy to turn it into the toxic notion that if a loved one dies from some disease (which is pretty inevitable), you didn't put enough brains or effort in it.

Unfortunately, every medical "support group" I have ever belonged to bent over so far backwards to not "blame the victim" that you absolutely couldn't talk about what worked because, inevitably, the sickest people with the worst war stories were the same ones who smoked, actively dismissed the idea that replacing carpeting with wood and tile floors might make a difference, etc. No, it absolutely wasn't socially acceptable to suggest that there was some correlation between the folks being proactive and having positive outcomes and the people shit-talking such approaches and their horrendous prognoses.

It creates an atmosphere where we can't realistically even try to investigate or develop a mental model for what actually works. So we just pretend that success or failure is some random number generator outcome. That always has me wanting to pointedly ask "So, why go to a doctor at all if it is basically totally random?" But I know how well that will go over, so I usually bite my tongue.

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