Why Roche or Merck won't saved us by now? (Discussion)

General Discussion
#1

Guys, i have been thinking this for years. Why and why they won’t fund and start a research for us?

They earn billions of money and could totally saved us in a short time… I mean even Khera now proved that PFS exist, we have concrete evidence now, we should be all suing them, health organizations should sue them.

It is not about suing anyways, i just want them to help us. To start a research, after Khera proved it, why they still didn’t care about us? WHY?

Is humanity and morality is this dead in todays world? They must be all aware of PAS and PFS. Why they won’t do anything about this?

They destroyed thousands of lives. People died because of them.

Why they won’t start a research and solve this disease in their amazingly technologic labs with millions of dollars that they can use as a toilet paper?

Can someone explain me the situation to me? About law and how things work? I just need to understand if they are just purely evil or not.

Thanks.

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#2

If you think about it there’s similar issues with Roche and the Anti Malaria drug Lariam…this was the first time I personally ever encountered someone being affected by a medication for years long after they stopped taking it .

A friend of mine took it when they went on a trip to Thailand …it really messed him up for a long time , similar to some of the PFS neurological issues really , severe anxiety , depression , anhedonia , sleep disturbances etc
I think to myself - this is a drug that doesn’t need awareness spread of the damage it does , the Doctors already know yet they STILL prescribe it , knowing full well what it can potentially do.

I think they will still prescribe these drugs like accutane, finasteride, SSRI, Lariam etc without fear of being sued . It will take something similar to Vioxx where thousands had deaths linked to the drug and Merck had no choice but to pull it .

There may be lawsuits and payouts when deaths are involved (the PFS sucides they will just say are depressed people, I’m talking about deaths where the drug has directly caused fatality ) but I can’t see them paying out for loss of quality of life etc
It’s tragic but it makes you aware of the dangers - I always assumed anything a doctor would give me would be fine , but I was wrong . :man_shrugging:

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#3

In the severist, suicide will always win ahead of death from related symptoms because the suffering becomes so extreme. However i have no doubt that there will have been a number of deaths from the likes of cancer, heart attacks which werent tied to fin. After all i was successfully treated for testicular cancer and there was a guy who survived heart failure last year. Without acceptance and diagnostic tools we’ll continue to slip through the net. Hopefully things will change one day with our efforts to get recognised.

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#4

I hear ya …this is what I hope for too :100:

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#5

Is pfs officially proven by now? Is there like a new study or something? Not denying by any means, but as far as i know there is evidence, but no definitive proof as of now, is there?

#6

Merck like any other corporation is an organization that’s primary purpose is to make money for the owners of the business. Merck was a poorly managed company for decades and the culture deteriorated to the point where the problem about PFS was not a priority for them as it didn’t make them money and it slipped through the cracks. They’re not a non profit so they won’t do research on PFS bc it wouldn’t make them any more.

Are they pure evil? That depends on how you define evil. They make drugs that help a lot of people but it isn’t part of their culture to care about the smaller number of people that they hurt. All people and organizations are flawed and have imperfections and we happened to have been treated unjustly by this part of Merck’s imperfection. They have done other things that helped people that didn’t earn them profit, but it at least earned them press coverage and PFS wouldn’t do that for them.

Unfortunately, I think it is very unrealistic to hope that they will help us and legal options are not practical as there already were lawsuits that mostly did not work out in our favor. Life has been very unfair to us in this regard as happens to some people, but it is now up to us and the community to make the best of what we can.

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#7

Very wise and mature words @Forwardsnotbackwards i hope that with recognition we will get funding from somewhere to find a treatment

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#8

@nw0ordeath as we were tbh. I just try to keep hope in that the videos and efforts by sufferers such as Dr Simon Breidert may come to something.

#9

What happened to the brain bank in Texas that had some pfs patients brain and spine and were supposedly getting more to study??

It’s been years ago…

#10

Results???

#11

Khera didn’t prove anything all he did was a test that any other urologist could have performed. The only way we’ll get proof of this shit syndrome/disease or whatever the hell we have is when the University of Utah decides to share the results of the gene study (part 2)

#12

It’s completely insane that anyone here has been waiting for someone else to push research for us. Merck wants the opposite. If research gets done then they will get sued. It is up to US and ONLY US to get research going. Our community has been an abject failure and we only have ourselves to blame. We sit here eating herbs and acting victims when all we had to do was public outreach and advocacy for research. We’ve done the utter opposite of that. We’ve sat and told ourselves es that everything was fine and all we had to do was play video games and complain until “Baylor comes out”. What a joke. We have made zero progress in 15 years and perpetually fail to confront that fact and adjust our approach whatsoever. As long as this remains the case, none of us will have decent lives. Rather only regrets. There’s only one life, and we continue to sit here throwing it away acting victims. In the end, we’re victims of our own doing because we could have had a cure and be on to great lives by now.

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#13

@vkg1 ive actually tried to contact the media, i was behind the recent DM article that was quite underwhelming tbh but nevertheless. Ive tried to get celebs on board and have been active in putting pressure on docs and consultants in them utilising the yellow card scheme. Im also going to contact the health secretary furnishing him wirh the vids, stories, and medical literature. I also intend to contact Louis Theraux - a journalist who is known for hard hitting documentaries. I deem this as public outreach, as ive said many times this is the key to unlocking the door. This is despite being smashed and on my knees.

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#14

We’ve got to get someone here to be an organizer for coordinating a large plan on how to move forward. Maybe we can all brainstorm on how that might be enabled. In the very least, we have to mature out of the pathetic grasping for quick fixes via pills, herbs, and injections that never work and often make people worse phase. 15 years of that has been 10 years too many. The culture needs to change from “woe is me and what pills can I take” to “what can I do to contribute to getting research started”.

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#15

Not thought of becoming more involved in an organisational role yourself, spirit and fight, plus your grey matter still seems in good order

#16

Wrong. We need about 25 good studies on this thing. Utah, Baylor, any of these other perpetual failures are completely irrelevant. They have set our cause back because they provided a false sense of progress. No single study will deliver us a fix, and if each is performed in serial fashion, then we will never get a cure. We need a MULTIPLICITY of studies. Multiple different tacks. Multiple different hypotheses. The good news is that this could all be done in just 5 YEARs if we would actually not be useless. No one cares about us except ourselves. We have to face this and get to work.

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#17

I feel your frustration , but you can’t blame people here for wanting to use herbs if they are merely seeking something to help their discomfort with PFS.

Minerals and supplements have helped some people , others they have not helped . That’s how it is .

Claiming that a herb is a cure, I agree with you here, is a separate issue as it leads a bunch of people up the garden path .

Chasing the media is the best bet at the moment as stories are shared rapidly and trending develops quickly - the medical industry see the news too and this would make them take notice and hopefully become aware . Louis Theroux would be an awesome leap forward if that could happen

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#18

I don’t blame anyone for anything, I’m just saying we will never get a cure until we start working toward one as proven by the results of the last 15 years. It’s deeply sad that pills, herbs, and injections have perpetually short-circuited the potential that has existed in this community, but I don’t blame anyone for it, I merely recognise that if we don’t face the futility and counter productiveness of that pursuit, and change our approach dramatically and quickly, then all of our lives will be tragedies.

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#19

Let’s not get ahead of ourselves. Khera published a study that suggested PFS is real. There have been a few other studies that have also suggested that. However, Merck successfully hid the evidence that PFS is real during their clinical trials, and most follow-up studies failed to prove the existence of PFS. As a result, it is now firmly ingrained in the minds of most of those familiar with finasteride (i.e. older dermatologists, endocrinologists, and urologists, as well as the online hairloss community) that there’s no evidence to suggest the existence of PFS. Most of those people aren’t familiar with the emerging medical literature, and even if they are, their minds are made up. It may very well take a couple dozen more studies in our favor to sway their minds.

Merck won’t help us simply because it’s not in their interest to. Researching and developing a cure would be too costly for how relatively few people it would help. And to do so would also be to admit that our condition is real, and consequently that they knew it was real for decades without doing anything about it. That would obviously land them in hot water. They have enough plausible deniability to simply ignore us.

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#20

So i assume Roche thinks like the same too then? But i mean didn’t a study found overexpressed AR on PFS patients? How they can ignore this? They proved that PFS is real.

Do we need more? Why they just admit their mistake and start a research for the sake of humanity?

@BibFortuna

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