500,000 lives destroyed in cold blood by greed

General Discussion
#1

Recently, without much fanfare, PropeciaHelp passed the 5,000 user mark. On this occasion, I will briefly recapitulate on the global PFS catastrophe.

It is reasonable to assume that for every 100 people affected with PFS, only 10 will ever find their way to PropeciaHelp, and of these 10 only one will sign up. This is consistent with reports elsewhere that only 1% of serious drug side effect victims sign up to dedicated internet patient forums. (If someone remembers the reference for this, let me know)

If this low number sounds crazy, just remember that more than half of the world’s population does not have internet. Older people, who are more likely to receive Proscar, are also less likely to be on the internet or know how to search for information. Finally, non-english language users, who would be the majority of PFS victims, are also highly unlikely to ever find PropeciaHelp.

A good example of this low internet forum participation rate is survivingantidepressants.org, which has only 15k members, whereas it has been estimated that more than 50% of long term antidepressant users experience debilitating, life-threatening, protracted withdrawal that takes years, and for which the internet forum is virtually the only source of information and support. There have been at least a hundred million people that have taken antidepressants long term. How many of these have tried to stop and have faced the catastrophe of psychiatric drug withdrawal? Perhaps a lot more than 1.5 million, which would be 100 times 15,000. This is evidence that 1% participation rate is in fact an upper bound estimate.

The existing PFS literature is consistent with the estimation that between 2 and 5 percent of finasteride users end up with persistent side effects, i.e. PFS. There have been perhaps 25 million finasteride users worldwide (reference?). 2% of 25m is 500,000 PFS victims. I believe this is the most conservative lower bound estimate for the number of people affected by PFS worldwide.

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Why are health authorities not investigating PFS?
#2

The question is:

  • Where are the government regulators charged with protecting the public interest?
  • Where is the research community?
  • Where is the media?
  • Where is the global public opinion?
  • Where is the research money?
  • Where is the conscience of the medical community prescribing these drugs?
  • Where is the public condemnation against big pharma?
  • Where are the prison sentences for pharma executives?
  • How can this holocaust be happening in bright daylight in the 21st century?
  • How many more innocent young lives have to be destroyed before anyone starts caring?

Each of these 500,000 people had dreams, goals, potential, talents. Each one of them is now lucky if they manage to cling to life day by day. Forget about family, children, career, joy, love, happiness, achievement, triumph, legacy…

Many don’t make it and each suicide devastates countless other people - parents, spouses, partners, children, friends. My own parents, and their parents as well, worked extremely hard all their lives and gave their all to give me a chance in this life. Now they watch me fade away at home with no drive, no motivation, no career, no family, no prospects, in physical and mental anguish, barely able to leave the house - my body, my brain and my soul completely destroyed. A small pink pill and a couple of dollars of profit have taken it all away.

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#3

Not necessarily. You may not be the next NASA astronaut, but you can still make a difference to the world, even in a small way. Heck, by being a unique member of this community you have the power to change potentially millions of lives for the better.

I don’t want to second guess your situation, but you still have to try your damn hardest to do something positive for yourself and the world. It’s the only logical course of action at this stage. What’s the alternative? Feeling sorry for yourself just don’t cut it mate. There’s an almost unlimited amount of suffering in the world. People manage to overcome the most extreme forms of adversity, not through adopting a ‘why did I deserve this’ attitude. They did it by putting one foot in front of the other and damn well did their best at what they could still do. Might even surprise yourself.

I suppose the issue is that there are so many things which need fixing. Most people without family and a career will suffer. I suppose you just got to do your best to try to move to a slightly better position than you were yesterday. That’s what it’s all about. Because the alternative is pure hell.

Sorry if that sounded a little preachy and patronising, but I think I needed to reply in this manner.

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#4

I guess the right attitude here would be to substitute “where is”, etc. with something like “how can I” or “what can I do about” if you feel strongly about this, then be the change you want to see. Obviously start small.

As for your personal situation, @Sibelio, you clearly have much to offer the world. You perhaps just don’t know what it is yet.

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#5

I will add that I have seen Sibelio’s truly brilliant ability to think about things in a slightly unconventional albeit philosophical way. Through pm as well as through posts. Very intelligent guy. Definitely have plenty to offer this community as well as beyond it.

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#6

Yes, the scale of this is truly horrifying. I think you are justified in using the term ‘holocaust’. I too have been struck by the parallel and led to wonder whether we - meaning the nations of the so-called developed world - ever truly faced and processed the hard facts about humankind’s capacity for cruelty that were laid bare in those camps in Auschwitz, Dachau etc., or if we merely pushed that horror underground, only for it to reemerge in a case of what psychologists call the ‘return of the repressed’.

I believe we who live in these nations have been led to believe a fantasy story about what our lives can be. Staring out at us from billboards, magazines, television sets and more recently computer and smart phone screens are images of people airbrushed to a supernatural apex of physical perfection, acting out lives of staged and scripted bliss.

When our own lives inevitably fall short of this, in step the big corporations to sell us a miracle. There are miracle foods, miracle creams, miracle exercise regimes, miracle gadgets and of course, as those of us who now gather here were unlucky enough to find out, miracle pills.

It’s surely more than just a tragic irony that the three drugs that have become the primary focus of this messageboard, Propecia, Accutane and SSRIs, all target conditions that wouldn’t even have been thought of as conditions a hundred years ago. Going bald, getting spots, feeling sad, these used to be considered part and parcel of life. This is not to say they were necessarily seen as easy, but that life itself was not seen as something that had to be easy all of the time, whereas nowadays, that is what people expect, demand, and are sold.

It’s as if the horrors we encountered in history were too much to bear and we went running from reality into a dream, this dream of high-gloss perfection, forgetting that dreams have a tendency to turn into nightmares.

These nightmares break through not just into our own lives, but also into the lives of those other ones, the people who live in what is sometimes called the Global South, those impoverished and war-torn parts of the world whose labour and resources we relentlessly exploit in a desperate effort to sustain our crumbling dream.

Where am I going with this? God knows. I like to think in terms of the big picture; psychiatrists have been wont to tell me it’s an overabundance of dopamine in the brain. I don’t pay them much attention, but it may be true that I can get a bit carried away by these thought-trains sometimes. Still, I couldn’t help but be struck by the way you laid out the multiple levels of failure and inaction that stand in the way of this modern-day holocaust coming to light and I felt I had to try and make some sense of it.

As for the question of hope in your own life, I hear you. The picture can sometimes look very bleak indeed. However, we can never know what the future may hold. I know it’s a bumper-sticker philosophy, but sometimes they’re the best ones. Even if all the usual avenues down which people achieve success in their lives are closed to you, perhaps, as others have suggested above, you’ll surprise yourself and find a secret path all of your own.

Remarkable things happen in this life. This is what keeps me going. I could never have foreseen the way my life has gone up to this point, it’s taken so many extraordinary twists and turns; mostly for the worse, yes, but I remain hopeful.

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#7

Yes, and we are easily made to play the villians who don’t care if people (gen pop) are depressed, going bald, or covered in acne. …“Scaremongers”

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#8

True. Like I said, I think it’s a core belief for a sizeable part of the population that the modern world holds a cure for every ill and when you call into question people’s core beliefs, they’re liable to turn into rabid dogs as they feel personally attacked.

The pessimist in me says that where core beliefs are concerned it’s rarely enough for people simply to be told they’re wrong, they need life to smack them hard in the face and show them they’re wrong.

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#9

Lucky us, huh?

#10

Indeed :stuck_out_tongue_winking_eye:

In all seriousness though, I believe we are part of a necessary process of the human species or, more broadly, life itself becoming aware of its own dyfunction. You can view this in terms of evolutionary biology, collective psychology or even, if you’re that way inclined (I have my moments) in spiritual terms.

I would never say we’re lucky, but using one of these frameworks we can at least look on our experiences as meaningful. It’s not just random bad luck, I mean, no, obviously it is that, but it’s also a part of something bigger: an integral process of life, that of learning and adaptation.

In his book ‘Swamplands of the Soul’, Jungian psychoanalyst James Hollis argues that while few people can ever hope to achieve happy lives, it’s at least possible to aim for meaningful lives; in my stronger moments, I feel a sense of awe and even a certain pride at how much suffering I’ve been able to bear and how it has deepened my awareness to a level unknown to many whose lives are less afflicted. Of course, much of the time I would still rather be a physically and mentally healthy naif running around sticking my dick in every hole, but as I intimated above, people like this are bound to get smacked in the face eventually.

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#11

Excellent and thoughtful post, @Luckydevil.

#12

I would like to update my estimate above.

It appears that at least 5 million people worldwide have PFS. A study by Prof. Belknap shows that adverse effects reporting in clinical trials of finasteride was inadequate. Prof. Traish agrees saying that “level of harm is tampered down significantly”. He estimates prevalence of persistent side effects at 3-5%. In his latest paper, he writes:

“[A]pproximately 30 million young men, worldwide, would be prescribed finasteride or dutasteride to treat male pattern hair loss. Even if the incidence of persistent sexual adverse events is 3% to 5%, which may be viewed as a small number, approximately 900,000 to 1.6 million men would suffer persistent sexual and psychiatric adverse events.”
https://www.sciencedirect.com/science/article/pii/S0015028219325993

These are the numbers only from finasteride and dutasteride for hair loss. The number of people who take these drugs for benign prostate hyperplasia is much higher, plus the dose is higher as well. As a result we can expect a lot more PFS cases. The conservative estimate is 3 million for both indications.

On top of that we have millions of people worldwide taking Saw Palmetto for a lot of different indications. The herb is extremely popular in many countries around the world, is advertised heavily, has a much wider reach than prescription drugs, and is completely unregulated. I know 2 people who got PFS from Saw Palmetto.

It is reasonable to assume a comparative but slightly smaller number of people have gotten PFS from Saw Palmetto as from Propecia and Proscar combined, as risk would be lower but use may be higher. Perhaps 2 million is a good estimate.

That brings the total number of people with PFS to 5 million.

#13

If we could find a way to educate the world on the role of DHT in the body then the penny would drop and people would suddenly realise that they had symptoms of PFS. I assumed that propecia only acted on the DHT in my scalp. I had no idea what DHT was. I thought it was some insignificant hormone that had gone rogue and was strangling the blood flow to my hair follicles.
Had I known it was more important than testosterone I’d have never considered blocking it. Merck knows people don’t really understand what DHT is and is massively capitalising on this ignorance.
If we are to tell the world about PFS we must first educate them on the role of DHT. The latter is almost always missing from articles or personal stories on PFS. We must bridge the gap that has been conviently left open by Merck and the prescribing doctors. We have the numbers to make a change but we need to wake up our sleeping army.
If a Dr said they were going to give you a drug that lowers testosterone most men would say no chance I’m not taking it. Enough said.

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#14

That sounds like a high estimate to me. I also think Traish might be overestimating the percentage of people that get persistent sides. 3-5% of people get PFS after Finasteride? I don’t think that’s reasonable. At the high end, that means 1 in 20 people get effected.

At that rate, urologists all over the world would be very aware of PFS and would see it in their clinic quite 1 in 20 patients.

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#15

If this is lifetime cumulative risk if Finasteride is initiated then it is very reasonable.

As for urologists, you are giving them too much credit I think. Also for that demographic sexual dysfunction is expected so people might not even blame the drug.

Patient compliance with Finasteride is very low in urology as far as I remember. That is not coincidental.

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#16

where does the 3-5% number come from? I think the best estimate we have is between 1-2% based on the Kiguradze et al study. I also think most who end up with PFS have mildish symptoms, otherwise clinics where finasteride is routinely prescribed would have 10s of patients coming back with drastic physical/sexual/mental symptoms and as a result doctors would be far more cautious in prescribing the drug.

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#17

Whenever I hear “otherwise something would be happening” and I roll my eyes. You guys seem to be operating under unrealistically optimistic assumptions about human nature, and consequently society and more concretely medicine.

I can give so many examples about drugs and treatments with a lot more than 5% risk of serous or deadly side effects that are still on the market where the truth is being denied for decades.

Also, according to outside observers, any case of PFS is mild in nature. That’s how it is viewed and categorized in the literature. “Side effects are mild”.

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#18

That is true I suppose I could be wrong, that kind of thinking is what landed us in PFS territory. I’m just thinking logically but you could be right, maybe I’m putting too much faith in natural checks and balances within the medical industry. All I’m asking is why 3-5%? does Traish justify it in the article?

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#19

3-5% seems way too high to me as well.

I would also like to see a source for “The existing PFS literature is consistent with the estimation that between 2 and 5 percent of finasteride users end up with persistent side effects”

To my knowledge, that one analysis from Northwest University* is the only paper that’s estimated a % of finasteride patients that develop PFS, and that percentage was 1.4% (.8% for people in the 16-42 age range)

*https://peerj.com/articles/3020/

#20

Please do. I’m not trying to be a dick, I’m genuinely curious to know what deadly drugs are still on the market.

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