Re: What can you do?

[Guest guest]

In a message dated 09/17/2001 5:51:34 AM Eastern Daylight Time,

huehnsfh@... writes:

<< I would like to challenge and encourage members of the group to step and

try

to make difference. >>

I agree - Please, if you aren't on MTX or other drugs that would

prevent it - make an appt. to go give blood.

Also, money is needed desparately - just be sure you give it to an agency

that's on the up and up.

[Guest guest]

Great info Rogene! Right on!

----- Original Message -----

From: Rogene S

Sent: Tuesday, August 26, 2003 8:56 AM

Subject: What can you do?

Some things anyone can do to help with the implants issue:

Number one . . . go public . .. One of the things this mess has fed on is our natural desire to keep quiet about mistakes we make. The women who have had the greatest impact have given interviews on TV, radio, newspapers, spoke to student assemblies . . . testified before the FDA and Congress. . . . as well as told other women about their experience.

Other things . . . If you can cultivate the friendship of a doctor who respect you and recognize the problems breast implants cause . . . then send them any information that you think they will find interesting. . . . (I started doing this with Dr. Melmed some years ago - he's become one of our best plastic surgeon advocates!)

Try to establish a personal relationship with your Congressman - state and/or federal. Some of them have local offices where you can stop by for a personal visit when Congress is not in session. Then, start feeding them information about the disastrous consequences of implants . . .Just know they have a staff whose job it is to weed out most of the mail that comes in - see if you can find a way around that! . . . Expressing a bit of outrage, combined with a personal remark regarding the support they are, are not, giving their constituents can sometimes get their attention.

Try to establish a personal relationship with one of your local news people . . . TV, radio, or newspaper . . . Give them a call . . . know what their interests are . . . let them know you appreciate their work . . .tell them if they missed a point . . . then ask if you can send them information . . . follow up with a call . . . work at creating an ongoing relationship with this person. Many news articles are actually provided by public relation organizations . . . act like a public relations organization yourself. Newspeople don't have the time to do as much research as they should . . . but if you provide them info, hopefully, they will appreciate it and use it.

Collect names/addresses of people at the FDA, NIH, FTC (they are interested in marketing schemes), and send them information whenever a topic should be of interest to them. Don't hesitate to express your indignation, anger and outrage at what is happening. . . in a civil manner, of course. This can be copies of advertisements, websites, articles about implants.

Submit Med Watch reports http://www.fda.gov/cdrh/breast implants/bimedwat.html .

See if you can get your doctors to submit it . . . but if he/she won't, submit it yourself and send a copy to your doctors. Curiously enough, the law has been weaken in this respect. Formerly, the law required that complications from devices be reported (it wasn't), so to keep all these "law abiding" doctors from getting becoming law breakers, they just made it optional! You can submit a new report EVERY TIME a new complication develops!

Dr. Zuckerman dz@..., is one of our most influential supporters . . . If you can afford a contribution to her organization, please do so. Send her whatever information you think she can use. She has the personal connections in Washington, D.C., and in the press, to get things done. She testifies before the FDA and Congress on our behalf.

You can also enlist family members to contact these same people on your behalf, telling about their personal loss as a result of your illness. . . .

And one more thing . .. don't just complain . . . offer suggestions for solutions . . . Maybe, some day someone will decide it's time to do something about this.

Rogene