"A Time For Action"

General Discussion Media & Awareness
#1

I’m sure this is an e-mail that the majority of the users on this forum received today, but if not I wanted to post it to make sure everyone continues doing their part. Please take the time to send emails and makes calls to the two FDA reps listed in the email. Thanks…

[b][Size=4]February 11, 2012

Dear PFS Patient,

The letter below was posted earlier this week by a member of the forum at PropeciaHelp (www.propeciahelp.com) who has written letters to many employees of the FDA.

It is time for collective action! It is time to make your voices heard! It is time to let the FDA know that you will not be ignored any longer! By overwhelming the FDA with the stories of large numbers of real patients, we can make a difference. Your direct communications with the FDA can make them understand on a real personal level how many lives have been dramatically altered by Propecia. Be persistent and be sure to follow up with the FDA multiple times, if possible. Get in their face, but be polite. Make sure they get the message. Let them know that this is a real problem that has affected real people.

Please write as many detailed letters and make as many phone calls as you can to Mary Ellen Taylor. Her contact information is listed below.

Please also send a copy of your letters and make as many phone calls as you can to Dr. Kavita Dada. Her contact information is as follows:

Kavita Dada

Senior Health Promotions Officer, Pharm. D.

Division of Drug Information

Center for Drug Evaluation and Research

Food and Drug Administration

10001 New Hampshire Avenue

Silver Spring MD 20993

(301) 796-3105

Kavita.Dada@fda.hhs.gov

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[/size][/b]

#2

Good to see we got some momentum going.

Try Erin Brockovich also.

brockovich.com/pharmaceutical.html

And Anderson Cooper

andersoncooper.com/be-on-the-show/639

#3

Write/call/email major newpapers, tv stations, news programs like dateline, 20/20, talk shows, magazines, medical journals, individual public advocates… anything, anyone who can help get this issue in the spot light with the national media.

AND

Something that has been vastly ignored Politicians on the State and Federal level.

#4

My congressman is one of the biggest douches in the House, but I’ll e mail him regardless. I think everyone should put his congressman on the list and we’ll email everyone of them. Here’s mine.

heck.house.gov/contact-me

type in the zip code 89123 to continue.

#5

Getting this group interested could influence research and practicing m.d.s

endo-society.org/about/Leadership-and-Staff.cfm

#6

I will definitely shoot them an email too, but we really need to focus on the media/political side of things because some of us have already contacted many people and organizations in the medical field and there is stuff going on there at the moment. Like Awor was saying in another thread we need to create widespread awareness about the problem to get more interest and money involved to support potential research projects in the near future.

And of course to support the legal aspects of this problem.

#7

As AWOR mentioned in a separate thread, we have be informed by different sources at the FDA that the organization is currently investigating post-marketing signals and unlisted side effects for Propecia. The email that was received by Second Amendment earlier this week is not your typical standardized response that we have received in the past from the FDA, Merck, and other organizations.

We are not entirely sure how long it will take for the FDA to complete their investigation, but we know that it is currently ongoing and any efforts we make to reach out to them now will not be ignored. I will be sending emails out tomorrow to both of the contacts listed above and possibly more.

#8

This is what I sent to Dr. Dada

Dear Dr Kavita Dada,

I’d like to bring to your attention the terrible disease called Post Finasteride Syndrome. This aweful disease is brought on by taking Propecia (finasteride 1mg). It is not a “side effect” of Propecia, but an aweful disease caused soley by finasteride use. The syndrome is a severe case of sexual and cognitive dysfunction. There have been a number of publications about the disease, and as more researchers become aware of the problem, that number is likely to grow. (see links below)

There has been at least one confirmed suicide from Propecia use: philadelphia.cbslocal.com/2011/05/03/health-watch-popular-drug-warning/

There are currently 5 research institutions in Europe attempting to tackle the problem. I hope the U.S. starts to take the problem as seriously as Europe.

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

#9

Let me add some detail to the story of the e-mail.

I sent that email to nearly every FDA public affairs specialist. Mary Ellen of the SF region sent me an e-mail back saying she forwarded my complaint to the center for drug evulation. The following week, she replied to an email I sent to another FDA public affairs specialist (Koontz of MT,CO…) that was apparently forwarded to her. That reply is the email I posted in the other thread.

So what’s going on: The FDA Public Affairs specialist are communicating with each other about the Propecia problem (at least Mary Ellen and Koontz are). Mary Ellen is the only one to date to bother to respond to an e-mail. (I talked to several others, they were all very supportive)

Protip: Don’t stop with Mary Ellen of the SF region. Copy and paste your emails and send them to every FDA public affairs specialist. The list is on the “University Hospital” thread.

#10

I don’t know any of you guys have heard about it or not but there are apparently 14 girls in western NY who have tourette’s like symptoms which are unexplained. This SMALL group of girls is already getting national attention and research done on their condition.

It really pisses me off that 14 girls with a condition like this (which is also a shitty health problem to have mind you) are getting more attention then the thousands of us with our life destroying problem. Why is this? Well partly because their problem is so obviously visable. And partly because we are not being as vocal as they are.

#11

[redacted link]

#12

Please let us know if you get a response from Dr. Dada or Mary Ellen Taylor.

#13

I did:

XXXXXXXXXXX,

I am sorry to hear about your experience with Propecia. You should report it through FDA’s MedWatch program. Each report is evaluated by qualified health care professionals and if warranted, action is taken by the Agency. Here is the link: fda.gov/Safety/MedWatch/HowToReport/default.htm Click on “submit your report on line.”

FDA evaluates drugs by weighing the risk vs. the benefit. This is a continual process. Information on serious side effects is crucial to the process. Your report is important.

I hope you start healing.

#14

Only two people got a response from Mary Ellen Taylor? :unamused:

#15

No more likely that only two of us sent emails. Something I have come to realize about people here, that I find strange is that they would rather sit around for hours arguing about scientific theories behind our condition then spend a few minutes sending out emails to the media.

Even more ridiculous when you realize that the vast majority of people here are not true scientists or doctors. (yes I know a few are)

Just compare the amount of people doing self experimentation vs the number trying to to get the word out about this thing.

When I first realized what had happened to me, I tried alittle bit of both.

But it didn’t take very long for me to realize that people have being dealing with this so long and we have found no true cure yet. Some random guy in the US or Europe isn’t going to find the cure by popping pills until he either dies or one works. Or by basically going to doc’s until your brankrupt and having every precedure, under the sun done to you until you find one that works.

Basically, we need research and funding, its good that we have a few ideas but we really need the medical and even more so the scientific community to find any cure if there is one.

But they won’t pay much attention as long as the majority of sufferer’s are too busy on here arguing about immune/allergic, epigenetic, prostate or whatever theories to write some emails, letters or make a phone call to the people who can really get the ball moving and let them know we are sick of this and not going to put up with it anymore.

#16

No shit. I’m sending out mass PM’s trying to organize one, just ONE, mass email and call bomb to my local news network (contact 13) to get this more condition some media exposure. When that works we could do that at another station, and another, and another. With some few exceptions, no one really seems to be on board with me. It’s sad.

Everyone reading this, please contact the Channel 13 in Las Vegas and tell them to investigate persistent Propecia side effects.

13investigates@ktnv.com

702-368-2255 (between 11am and 1pm Pacific time)

#17

I sent them an email too… I’ll try with a call tommarrow.

I’m trying to identify more national media sources to talk to but I am having a hard time contacting some and running out… if anyone has any ideas about who to contact on the national end. Please let me know.

#18

I have been trying to put up people and organizations to contact in some threads, what everyone should do if make their own template email/letter to save themselves sometime so they can email out 10-50 emails relatively quickly.

Here’s a few places to send emails to help get our story out.

NYTimes email addresses:

news-tips@nytimes.com

nytnews@nytimes.com

executive-editor@nytimes.com

Parade Magazine:

editorletters@parade.com

Time Magazine:

letters@time.com

#19

abcnews.go.com/Site/page?id=3271346&cat=World%20News%20with%20Diane%20Sawyer

#20

e-mail I got from ABC News

Thank you for your request to ABC News.

To submit a story idea to one of the ABC News shows listed below, write a single page letter including your name, phone number, and address. Include photocopies of backup information. On the outside of the envelope, write “Story Idea.” If a producer is interested in your story, he/she will contact you. Here are the show addresses:

20/20
147 Columbus Avenue
New York, NY 10023

Primetime/What Would You Do?
147 Columbus Avenue
New York, NY 10023

Nightline/This Week
1717 DeSales Street NW
Washington, DC 20036

ABC World News with Diane Sawyer
47 West 66th Street, 2nd Floor
New York, NY 10023

Good Morning America
147 Columbus Avenue
New York, NY 10023

If you are submitting a LOCAL news story:

Go to ABC.com
Go to the bottom of the home page and click on “FAQ”
Click on Question #2
Click on “nationwide affiliate map”
Follow the instructions to get the website, address and phone number for your local ABC station.

Note: The Company’s long-established policy does not allow us to accept for review or consideration any ideas, suggestions, or creative materials not solicited by us or our subsidiaries. Therefore, in the event that you have submitted such content, please be advised that the submission has been forwarded to the Company’s legal department for handling.