Help writing letter to university hospitals

Second_Amendment · May 25, 2018, 7:01am

This is the response I got from the West Coast FDA Public Affairs Specialist

Everyone, CONTACT MARYELLEN TAYLOR!!! By phone or by email.

In 1997, the FDA made a huge error by approving Propecia (finasteride 1mg) for treatment of male pattern hairloss. Despite the manufacturer’/ Merck’s claims, an unknown number of men have been left with permanent sexual and cognitive dysfunction due to finasteride. The problem has come to be known as Post Finasteride Syndrome (see links below). Unforunately, until recently, many doctors have been dismissive of the men’s claims that finsteride left them with persistent sexual and mental problems. The problem is now accepted as real, but to date, there is no treatment for the Post Finasteride syndrome.

The media have identified at least one confirmed suicide due to the persistent sexual and cogntive side effects of Propecia. philadelphia.cbslocal.com/2011/05/03/health-watch-popular-drug-warning/

I believe the FDA is capable of helping to solve this debilitating condition. I also believe it is the responsibility of the FDA to help solve the problem that Merck and the FDA created.

Please contact me about to learn more about this problem so we can set up research initiatives to cure this disease.
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2011.02368.x/abstract
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2011.02255.x/abstract
onlinelibrary.wiley.com/doi/10.1111/j.1743-6109.2010.02157.x/abstract

This is the email I wrote.

awor · May 25, 2018, 7:02am

Second Amendment:

This is the response I got from the West Coast FDA Public Affairs Specialist

Dear Sir,
Thank you for contacting the Food and Drug Administration.

We are currently evaluating the potential safety signals of persistent sexual and neurocognitive adverse events associated with the use of Propecia. When our review is complete or significant data warrants, we will take regulatory actions as deemed necessary. If an action is taken, it will be reflected in the labeling of the product and/or a public advisory.

We understand your concerns and share your interest in protecting the populace from potentially adverse events while using medications.

Mary Ellen Taylor, MSPH
Public Affairs Specialist
FDA San Francisco District Office
1431 Harbor Bay Parkway
Alameda, CA 94502-7070
(510) 337-6888
(510) 337-6708 Fax
maryellen.taylor@fda.hhs.gov

Everyone, CONTACT MARYELLEN TAYLOR!!! By phone or by email.

Thank you so much to everyone who is taking the initiative to contact the FDA. Your doing so is probably one of the most powerful actions we can take at this point. We have confirmation from other sources that the FDA is apparently conducting a review of the safety profile of Propecia. In other words, the timing now is CRITICAL! The window of opportunity is open to get this crap re-labeled, black boxed or even taken off the market.

Any status change of Propecia would hugely benefit our legal actions and could also be helpful in recruiting more scientific resources and funding to tackle this complex problem.

The best thing to do is to use the official MedWatch Online Voluntary Reporting Form (3500) -Click the “BEGIN” button on the right:

accessdata.fda.gov/scripts/medwatch/medwatch-online.htm

Additionally, call Mary Ellen Taylor, as stated above, write a letter and generally raise hell with the FDA!

Go for it guys.

BP7667 · May 25, 2018, 7:02am

I have seen the drug sales per year to be something around the number of $300 million how much of this is profit is difficult to say but I can say without much doubt that it is most likely in the billions range.

BP7667 · May 25, 2018, 7:02am

awor:

dgreene:

Hey Second Amendment, did Dr. Traish respond to your email?

We are in direct contact with Prof. Traish since years. We are also in contact with the other main players in the area of AR related research. Our “problem” currently is not one of interest or lacking contacts, it’s just a question of money and funding. As previously stated, it is of little use, and possibly even counterproductive, if members of this forum - inexperienced in this area - try to contact scientists directly. I promise you, we are working on some very big things in the background and currently have all the bases covered. Just have faith in what we are doing, even if we can’t talk about everything we are doing up front.

If you want to spend some time on letter writing, what would REALLY help us, is to write letters to media, politicians and the FDA. That would be HUGE help! Indirectly, massive media coverage of this problem and political awareness will ultimately help us with funding. In other words, by helping to create more media and political awareness, you are indirectly helping research in a way which is much more effective, than by trying to contact scientists.

Anyhow, thanks for everybody’s interest and the time and effort you are willing to invest. Just please let’s funnel this energy into a direction that that is effective.

I have been trying to push people to contact media outlets since I started on this forum a year ago. I myself have contacted Foxnews, CNN, MSNBC, “The Dr. Oz show”, The FDA (more on them in a second), I am currently working on letters to the NY Times NY post and USA Today. I even wrote an email to Erin Brockavich who does allot of legal work on public interest issues.

I urge EVERYONE to at the very least contact 2 or 3 media outlets on the national level… talk shows, TV stations, magazines, newpapers and individuals who might be able to help impact our situation.

Second_Amendment · May 25, 2018, 7:02am

I think we should do “flash mob” type call-ins to news outlets. Like we all call a Las Vegas news network one day, and LA one the next day, a NY one the next…

edit: and I just e-mailed Erin Brockovich

spstriken · May 25, 2018, 7:04am

good idea.
problem I have not used and we know it is 5 AR inhibition but how the helll other people will understand this?
I want to call but then since have not used propecia hesitate.

Lincoln28 · May 25, 2018, 7:04am

Im not trying to be funny, but is English your first language?

spstriken · May 25, 2018, 7:04am

nop English is not my first language.

Lincoln28 · May 25, 2018, 7:04am

nop English is not my first language.
[/quote]
OK, cleared that up.

spstriken · May 25, 2018, 7:06am

Ok
I contacted university of Chicago for our problem. I sent emails to five professors and none replied back. I sent again and no response. Finally I called one professor and he immediately said to contact a doctor while I was still explaining our issue.
I think as soon as you use word Sexual effects or erectile dysfunction people don’t believe you and get fed up. Maybe they think “ok what is the deal? go and get Viagra”
I learned we should not emphasise more on sex but rather on physical and mental health issue like depression, muscle loss, weight loss , mental sides etc.