We have to cause a ruckus!

General Discussion Media & Awareness
#1

We can’t just sit here and do nothing about this. We have to get the word out there!

I’ve just written up 3 letters. One for the FDA, one for merck frosst canada, and one for the us office.

We can’t just sit here and take what this company did to us. They want us to be quiet and suffer in silence.

I urge everyone to send them letters to their offices/ departments. (there contact info is on the main site)

We have to be persistent!

They can’t hide this forever and the more we do to get it out there the better!

#2

People should contact your local and federal government represenatives as well. Couldnt hurt just to give them a call. Canada’s gov’t may not be as much in the pocket of Merck as our gov’t. Unfortunately they might just direct you to your FDA but its worth the cost of a phone call. Compile a list of doctor and counties (only Sweden?) who now recognize PFS.

Speaking of gov’t agencies - anyone with any grant writing experience? Anyone on the forums who could help us seek out research funding? Does anyone have any idea how much funding would be required to start research? I am assuming we’d have to raise at least a six-figure sum to start. Since Jacobs has mentioned that we must employ the interest of a research endo I am going to email and ask him about this idea and what it would entail. Personally, I would pledge 5k toward research if we set up something legitimate with transparent accounting. I am sure there are others here who would also contribute.

#3

I think contacting the media would be more effective than contacting govt agencies etc, as let’s face it they’re all slaves to the corporations these days.

This is a big story, and is worthy of prime time coverage. Thousands of men worldwide having theire lives ruined for a ‘hair loss’ pill.

#4

True, maybe contact gov’t agencies/officials and keep documentation of it. Then go to the media on the pretence that you have already tried the appropriate channels and gotten no response. If one small town newspaper picked it up hopefully it would have a domino effect and be picked up by other news outlets.

See if there is a reporter who handles health issue stories and email or call them. I will be doing this today. I am emailing Chris Swingle who is a health reporter for the Rochester Democrat and Chronicle. Anyone else in NY please consider emailing him.

If anyone else is in the upstate NY area and wishes to contact him his email is - cswingle@DemocratandChronicle.com

#5

Is there also some way we could compile a somewhat 1-2 page summarized document to bring in to doctors for those who can’t see Jacobs, crisler, shippen? I’m sure it would have to be in doctor speak, but this may go a long way for those bound to HMO’s and the like. Maybe it would at least keep them from writing off the symptoms people are complaining about and attributing it to getting older, psychological problems, etc. Possibly allowing them to seek similar treatments proposed by PFS docs. May also help with awareness.

#6

Well, there is plenty on this forum in the way of those materials. Thats the easy part. Personally I’d start with the fact that Sweden has acknologed permenant sexual side effects and forced Merck to put a black box warning label on Propecia. Getting some GP or endo to take it seriously at all is the difficult part. The vast majority will completely discount it as paranoia driven by the internet. They probably write scripts for Propecia and Proscar all the time and never see the side effects.

#7

Where have you seen this? Please provide evidence. The only thing I’ve seen is “persistent erectile dysfunction after discontinuation” or something to that effect listed as a post-marketing reported side effect.

#8

One of the docs told me this (wont mention which for reasons that are obvious) due to the 2008 study. Unless I misunderstood it and he meant in a report and not on the box iteself. I will be talking to him soon and will get clarification on that.

#9

I understand. I just thought there might be a way to make it where it could be pretty undeniable. It’s hard to point out all this stuff all at once without digging. Once you are here for a few days you see everything, but first glance it’s not so transparent. I’d just point docs to this site, but what’s the chance they’d even open their browser to look. Sorry, I’m rambling!

#10

The fact that the Swedish gov’t has published findings that it causes permenant damage, whether on the label or someplace else, is pretty convincing.

Also, The UK’s Medical and Healthcare Products Regulatory Agency (MHRA) say that erectile dysfunction that persists once use of Propecia has stopped has been reported to them.

I dont know if the FDA has ever publically addressed Finasteride victims.

#11

Ok, Im no writer but here is my draft, any comments or ideas? Anything I have wrong?

Mr. Swingle,

I have read some of your articles in the Democrat and Chronicle on the subject of health and fitness. I wanted to bring to your attention a very devestating condiition that many young men, including myself, have become victims.

Many of us have taken a drug called Propecia for male pattern baldness. Propecia is a brand name for a cancer drug named “Finasteride” that was developed by the drug company, Merck. When this drug was given to cancer patients it was called “Proscar”. It is an anti-androgen. It acts by blocking an enzyme called 5ar2. By blocking this enzyme Finasteride blocks the conversion of Testosterone to DHT. DHT is a much more potent androgen and one that is vital for mens health.

While many men do tolerate Propecia well, there is a large subset of men who have developed severe degrees of hypogondism and permenant sexual dysfunction among other horrible side effects either while taking the drug or long after cessation. These side effects are so intolerable some men have committed suicide.

The men like myself who took this drug were perfectly healthy men just going about our lives. We were told any side effects from Finasteride would cease after cessation of the drug. Howerver , for myself and many others these side effects never have ceased. Some have suffered for as long as seven years. What is most alarming is Merck is aware of this issue. Swedish medical board has made Merck add to their literature the possibility of “permenant sexual dysfunction”. Why were we not warned?

Currently GP’s , hair restoration doctors and the like prescribe this medication to men with no warning of the possible outcome and undoubtely have ruined some of their lives.

This condition has gotten the attention of Dr. Alan Jacobs who is a graduate of Duke Medical School and former Harvard Medical School professor. Dr. Jacobs is now blogging about Finasteride. blog.alanjacobsmd.com/alan-jacobs-mds-blog/2010/10/index.html

I am a member of a forum called propeciahelp.com. I ask you to please visit this website, view some of the literature and consider helping us bring this issue into the public eye in the hope of some day finding a cure.

Sincerely,

#12

That sounds like a great letter to me Boston!

Also men have committed suicide over this? I’ve thought about it countless times but I didn’t know people had followed through with it!

#13

If you watch the video on this site Dr. Crisler mentions the suicides at least from the old yahoo forum.