"A Time For Action"

General Discussion Media & Awareness
#21

To follow up on the good work by Second Amendment, I sent out a handful of emails to public affairs reps at the FDA. So far I have only received a response from Mary Ellen Taylor but the response was encouraging.

To paraphrase her letter, she apologized for my experience with Propecia, let me know that the drug is currently under review by the organization, and informed me she has been contacted by other guys with similar unresolved problems.

This is important because she clearly read and internalized my email rather than sending out a pre-formatted response. She acknowledged I had done my part by submitting my MedWatch report which is important for the rest of you to do.

Since the drug is currently under review and our concerns are being taken seriously,

PLEASE SUBMIT YOUR MEDWATCH REPORTS TO THE FDA, EVEN IF YOU ARE FROM A FOREIGN COUNTRY

These post-marketing adverse events reports are what will influence their decision the most. If the FDA publicly acknowledges the existence of our symptoms it will have so many benefits for us, mainly that it will allocate focus on figuring out potential cures and doctors will take us more seriously. I know a lot of guys here are not from the US, but the FDA is the organization to lobby and of course would like to hear from guys who have taken the drug in other geographic regions.

#22

Thanks for your help Frustrated. Doesn’t seem like many people are intersted in contacting media sources. We have such a powerful tool at our desposal (this forum), we can create a very powerful network focused on awarenss, and finding a cure but it seems people would rather spend their time arguing amongst fellow sufferers.

btw, you should really test for candida.

#23

New (brief) response from Sandy Ziegler (information below) via Maria Velasco:

Please report current problems to Medwatch, as an update or attachment to the Medwatch form you submitted or send in a new Medwatch as an update on the previous one.

Mr. Sandy J. Ziegler
CONSUMER COMPLAINT COORDINATOR
DALLAS DISTRICT INVESTIGATIONS BRANCH
4040 NORTH CENTRAL EXPRESSWAY Suite # 300
DALLAS, TEXAS 75204
SANDY.ZIEGLER@FDA.HHS.GOV
VOICE # 214/253-5237
FAX # 214/253-5314

[Size=4]I will absolutely be submitting an updated Medwatch report ASAP and suggest you all do the same. In fact, you may even want to proactively contact this fellow, Sandy Ziegler in a polite but direct manner that will make it difficult for them to ignore our problems.[/size]

I submitted my originally Medwatch report within several months of quitting the drug and sadly, nearly two years later, my symptoms have not resolved. As far as they know, given their current information about my case, I could have recovered a few months later. However, I will now be able to provide them with more information chronicling the conclusive results of my lab tests and absence of diagnosis for all common causes of sexual dysfunction. The signal will much more clearly indicate that the symptoms do not resolve independently, are clearly not psychogenic due to conclusive lab testing, and are not due to other factors that may cause ED. Given the updated information, it will be much more difficult for the FDA, Propecia supporters, or Merck to deflect the cause of my problems to other factors.

#24

I just sent an email to Sandy Zeilger. (Hopefully, others will too.) I spoke with Maria Velsco over the phone. She was very nice and sympathetic.

#25

I contacted Sandy Zieleger. I got a similar response

Please file this updated information in another Medwatch form . Go to FDA.gov to obtain the Medwatch form.

Thank you

Mr. Sandy J. Ziegler
CONSUMER COMPLAINT COORDINATOR
DALLAS DISTRICT INVESTIGATIONS BRANCH
4040 NORTH CENTRAL EXPRESSWAY Suite # 300
DALLAS, TEXAS 75204
SANDY.ZIEGLER@FDA.HHS.GOV
VOICE # 214/253-5237
FAX # 214/253-5314

#26

Dr. Dada called me today and left a 4 minute message. She seemed very concerned about Propecia. She wants to know if I got “contaminated” finasteride (wtf?) Of course, she told me to fill out a medwatch report, as if I haven’t done that or been told to do that.

Anyone else hear from Dr. Dada?

#27

I received an email from Dr. Dada about 5 days ago but just realized this last night as it shoed up in my spam folder. She asked me to amend my MedWatch report with more detailed information since I have not updated them after my initial report.

#28

Keep on going guys, hammer away at the FDA or whatever your local pharmacovigilance organisation is called. They may think we’re stupid, but guess what:

Make a scam at your local tv and news organisations. Contact your local politicians.

Given time, we will prevail!

Making a big fuss about this is the most important thing you can do, and will get us much further than cooking up homebrew theories all day!

#29

facebook.com/OccupyFDA?sk=wall#!/OccupyFDA?sk=wall

everyone should ‘like’ this on their face book. Liking something on facebook is hardly “action” but still, why the fuck not?

#30

While your at it, “Like” this:

facebook.com/propeciahelp

#31

Response from Erin Brockovich

#32

Regarding media pitches (which I agree is the best use of everyone’s time/energy). A few tips:

  • For the large networks (and even smaller markets), pitch a reporter directly. The large tip email addresses are at best read by an intern (if at all). Try to find the medical, consumer, or investigative reporter’s direct email address. For most outlets, this requires no more than a Google search.
  • Keep it short. Reporters get TONS of pitches. Write the pitch as you would imagine the reporter telling the story.
  • Start with a hook: Have you heard about the thousands of men who’ve lost their sex drive/manhood taking Propecia?
  • Make it personal: I (or another person–state their name) took this drug in 2008 and my life has never been the same.
  • Cite research: According to Dr. Irwig…
  • Cite media coverage: This is a story everyone is talking about (Men’s Health, CBS, ABC).
  • Mention why they should care: I’m sure XXXX’s viewers/readers would want to know how devastating this drug has been and toll it’s taken. So many men suffer in silence, this would really help bring men out of the Propecia closet and improve awareness.

As Second Amendment mentioned, folks aren’t making these calls because they’re afraid to go public. I understand folks have reputations to protect (self included). However, the only way to drive research and legal action is to speak out. It only takes a few guys. Maybe those with nothing to lose or who aren’t afraid to speak the truth about what Merck has done to them.

I think some of us fail to realize the amazing public support we’ll likely get once this gets big. Most of us fear that people will think we’re weak, emasculated impotents. But does anyone blame the folks who took Vioxx for their heart conditions? Or the cancer-stricken or barren women of Hinkley, CA for PG&E poisoning their ground? People are extremely sympathetic to victims of Big Pharma. We can’t live in fear and win this fight.

#33

Your absolutely right TX, people should not be afraid of the public reaction, this condition is not our fault we were all mislead and there is no shame in saying a drug caused you severe side effects. This is the only way we will get the attention and interest we need to generate research. Especially the guys who come here in agony, when your in that much pain who cares who knows about your problem? Is it embarassing? Of course, but if your suffering who cares if anyone gets a giggle out of it, sure as hell won’t be Merck laughing when they getting defamed by national media for their drug thats ruined peoples lives… But thats never gonna happen unless more people speak up.