A very good question.
I don’t think the FDA will remove Propecia from the market while the sitting US president is taking the drug and fond of it.
3 Likes
If he crashs we don’t have to care about fundings anymore.
8 Likes
1 Like
It’s wrong to wish PFS on anyone, but dear god can you imagine how swiftly a cure would be found after that?
5 Likes
LOL, I agree.
1 Like
I don’t think they would find a cure over night.
Reagan had alzheimer’s yet they still haven’t found a cure for it.
2 Likes
I hate to say it, but does anything really get cured, especially in terms of chronic debilitating diseases?
1 Like
Once upon a time bacterial infections were a death sentence. Now they are not.
Once upon a time HIV was a death sentence. Now it isn’t.
See what I’m getting at?
4 Likes
Big pharma decides who gets cured and who doesn’t. They lobby against non drug treatments and have been successful at holding back stem cell and fecal transplants in the US. Their friends at the FDA also put huge price tags on being FDA approved which keeps many treatments at bay from getting approval.
Being FDA approved sells treatments which then helps bring down patient costs.
Big pharma is especially protective over the cancer industry their 100 billion dollar pa cash cow.
Stem cell treatments should be used to repair the damage from a heart attack for everyone making it more affordable. Big pharma says to FDA more evidence needed for stem cells blah blah blah.
It’s been said many times but cures are not profitable treatments are.
Politicians received huge pressure to find a cure for HIV. We are starting to see this now with brain diseases like Alzheimer’s because we are living longer and more people are being affected.
Pharma is evil piece of S…T
There are health documentaries out there that explain it a lot better.
Pharma is now the least trusted Corporate sector in the US and adverse drug reactions are now the third biggest killer of all Americans.
I repeat Pharma is evil piece of S…T
1 Like
Side effect probability is underestimated. People who are overwhelmed by the fear of hair loss don’t say anything negative about drugs.
2 Likes
I remember reading the book the trillion dollar industry or maybe it was from a documentary that it’s often the people who work for the FDA would get roles in big pharma companies after they were done their tenure with the FDA and also the FDA is fully funded by big pharma.
There’s absolutely no reason to trust the FDA and big pharma, they’re absolutely in bed with each other. The whole system is screwed up.
2 Likes
This utilitarian argument might hold water if finasteride were the only drug causing this rare effect, but due to the fact that other medications and even herbs cause this condition, I actually think it’s in humanity’s best interest to discover the actual molecular mechanism behind whatever causes “PFS” and our disrupted androgen signalling.
I was definitely planning on donating to this forum once I’m no longer between jobs, but I also will refrain from doing so or from ever contributing to this forum’s projects any longer if they focus on anything which will delay or neutralize the chances of finding a cure.
2 Likes
This mentality is very disappointing to me and a little disturbing even. The complete lack of empathy and disregard toward potential future victims reminds me of how Merck execs acted when they hid safety data from the public to sell more drugs. The selfish benefit is so minimal because even another 5,000 patients isn’t going to do much more to entice more research.
It’s up to you whether you choose to donate to the Foundation. As far as I know, no donations were used for the Citizen Petition since there were no cash costs involved. I believe donations you make would almost entirely go towards funding studies.
It’s also not consensus thinking that persistent side effects from SSRIs, 5-ARIs, and isoretinoin are the same condition. Although sufferers of all drugs report persistent sexual effects, from my understanding, each drug class has a very different mechanism of action.
2 Likes
I’m actually open-minded to both sides of this. I would never, ever agree to actually “sacrifice” others for my own benefit, and I like thinking about both sides to such ethical questions in the abstract. This is all speculative, since it’s not going to just be taken off the market because of what we do or don’t do.
That being said, from a utilitarian perspective, I do think there are a lot of downsides to the other approach as well. For instance, it’s a very, very bad precedent if the pharmaceutical industry learns to simply ignore the damage they cause and then cover it up by simply taking drugs off the market.
Just to be clear, no one’s advocating anyone recommend people take it, or to stop warning people about it.
I do advocate against supporting such petitions, or supporting Dr. Santmann anymore if he prioritizes taking it off the market in a way that would decrease the chances of finding a cure. It would be different if he first successfully got the government to recognize the syndrome and commit to researching a cure.
As for the numbers, on this very forum, we’re constantly told how much better it would be to get 1,000 people to take their survey, so I’m not even sure 5,000 additional people would objectively make no difference.
As for empathy, we’re the only ones that receive no empathy, the doctors, our families, even normal patients of finasteride don’t even believe that we’re not crazy. It’s not our job to sacrifice ourselves for a speculative quest to save future victims.
5 Likes
At this point, I just want them to recognize it and research the problem. I don’t even care about the cure personally for my own benefit. I probably won’t even be around personally by then.
I believe and hope it’s the same. First time i crashed on ssri. Second time on pepper extract (5-ar inhibitor).
We can just measure abnormal values found in pfs in pssd victims.
That’s probably cheap to get and in my opinion important.
It’s nice move to increase fundings as well.
Just noticed the FDA pulled the following page about the 2012 label update in Nov/Dec 2017, a couple months after the Citizen Petition was submitted. This was almost two years ago, so who knows what it means, but it reminds me of when Merck pulled their Propecia website while they were negotiating the last big update in 2012.
1 Like
This apparently happened over Vioxx and an FDA guy went over to Merck. Moving from Public to Private sector is £££££.
1 Like
Well, it looks like on this page they repeat Merck’s lie that sexual side effects resolved in men who stopped the drug. After the petition, presumably, they realized this lie is easily exposed, so it would be bad PR to keep standing behind it.
2 Likes