Re: Another advocacy group?

[Guest guest]

Kind of reminds me of AIDS. When it first came out, everyone was

talking about it, everyone was afraid of it - and then the talk died

down. It's still out there, still spreading - just like we're still

out there, and women are still getting implants and getting sick,

but the media buzz isn't as loud.

Sis

>

> Look at all the support groups listed at the end of this

newsletter. I have to wonder where they all went? And wouldn't it

be so much better if all of these scattered support groups came

under one umbrella group that could make louder noise all together?

Finding old newsletters like this one shows that: 1) implant

problems have been around for decades

> 2) Women are not going to shut up about their illnesses

> 3) Women are scattered all over the world who are suffering, and

> 4) Support is a fractured effort

> Newsletter #23–April 1994 Return to Search | Return to

Chronological List

> Project Impact: Education, Support and Advocacy for Women with

Problem Implants Their name says it all: Project Impact (IMPlant

ACTion) is more than a support group. Barely a year old, this grass

roots group aims to empower women who believe their silicone breast

implants have triggered chronic, ultimately life-threatening

illnesses such as lupus erythematosus, scleroderma, mixed connective

tissue disease, and rheumatoid arthritis or more vaguely defined but

debilitating conditions such as chronic fatigue or fibromyalgia.

Anecdotal evidence suggests that implants may also cause memory

loss, although this has not been I studied. For many of these women,

the I rheumatologic and neurologic disorders add up to a double

whammy, the first blow having been a breast cancer diagnosis.

> " No one knows how many women have breast implants, " says Project

Impact Co-facilitator , " because no systematic records

have been kept. As many as 2 million women have implants worldwide

and 20 percent or more of them have problems. Many of the women who

had implants after mastectomy for breast cancer have since died. We

don't know whether silicone affected the return of their breast

cancer. We do know that women have been having problems for a long

time.

> Some women have had as many as 6 sets of implants because of

repeated failures. A common reason for replacing them has been

capsular contracture, or the hardening and tightening of the scar

tissue around the implant. The implants may also rupture, leak, or

shift to a less desirable position.

> 's own journey with breast cancer began at age 40 and

included mastectomy and reconstruction. Now a 12-year survivor, she

works on behalf of women too sick and debilitated to continue the

struggle on their own. She has started a monthly newsletter: IMPACT!

* which will report on silicone related issues of special interest

to women in the greater Bay Area. The newsletter will also connect

with other national and regional groups that publish newsletters

such as Command Trust Network, Coalition of Silicone Survivors, and

Silicone Scene. Rather than competing with these other newsletters,

IMPACT! will assist women in forming local support groups, announce

Project Impact monthly seminars and report support group news.

recommends that women take a proactive role in improving

their health by reading recent books and medical articles on the

silicone issue and by networking with other women. They should also

stay abreast of the legal ramifications of silicone. Recently the

> Dow Corning Corporation and two other implant manufacturers

pledged more than three billion dollars to an international

settlement fund. says women affected by breast implants

should study the options presented by this agreement (See Silicon

Implants and the " Global " Settlement).

> Public Citizen reports that in 1988, FDA staff concluded

that " silicone can cause cancer in rats; there is no direct proof

that silicone causes cancers in humans; however, there is

considerable reason to suspect that silicone can do so. " (Dr. H.M.D.

Luu, memo to file, Aug. 15, 1988.) This was in response to studies

conducted by Dow Corning that showed silicone gel produced sarcomas

in 25 percent of laboratory rats and 85 percent of those affected

died. None of the control rats developed tumors.

> A better known carcinogen is polyurethane foam, used as a

coating on implants from the 1960s to 1991 to combat capsular

contracture. The foam breaks down, releasing TDA, a substance known

to cause cancer in animals. Foam-coated implants became the most

popular type by the mid1980s, but at least one manufacturer was

using an industrial grade of foam never intended to be used in the

human body. The FDA estimates that about 10 percent of implanted

women received polyurethane-covered devices.

> About 40 percent of the women with implants received them as

part of reconstruction after breast cancer surgery or after

prophylactic mastectomy; the other 60 percent had breast

augmentation. The percentage of women having mastectomy who choose

reconstruction using implants is not known. thinks roughly

40 percent of Project Impact's mailing list of 200 women had

mastectomies either because of cancer or a diagnosed high

probability of cancer, and received one or two implants as part of

reconstruction.

> The National Women's Health Network reports that between 1990

and 1992 the number of breast reconstruction procedures by plastic

surgeons dropped by one-third, due to the FDA ban on silicon

implants for cosmetic breast augmentation. The revenue lost to this

decreasing demand for implants is being balanced in some cases by

the increased demand for implant removal. In 1992, more than 25,000

women had their implants removed, nearly a third of them

reconstruction patients. More than 43 percent of these women did not

have their implants replaced.

> " Recently one of our members contacted the White House through

its 'Comments Hot Line,' " reported. " Severely disfigured by

a mastectomy related to explanation, she has had her requests for

limited reconstruction (without implants) rejected by Medicare and

Blue Shield. She wanted the White House to assist her in persuading

Medicare to cover the $10,000 operation. The Hot Line operator told

her that the White House isnt interested in helping with problems

that are 'self-induced. " '

> " Because of the strong media focus on breast augmentation,

breast cancer survivors who received implants are all but invisible,

and breast implant recipients in general seem to be suspect. The

surgeon who told me my lump was malignant was the first to mention

breast reconstruction. Like so many doctors bearing the bad news of

cancer, he tried to soften the blow. Before I even had the

mastectomy, I was in the office of the plastic surgeon recommended

by my general surgeon, looking at photos of reconstructed breasts. I

was told I was lucky that these advanced procedures and safe, breast-

like devices were available. Now it's salt in the wound to hear the

President's staff say my complications from a ruptured implant

are 'self-induced.' "

> Women with problem implants are paying a high price for what

they thought would be a restorative procedure. But they are not the

only ones who pay. " Estimates on the cost of evaluating and treating

these women over the next 30 years exceed $137 billion, " says

. Meanwhile, Project Impact continues to offer information

and advocacy to silicone survivors living with the reality

of " alleged " diseases.

> *To subscribe to IMPACT!, send $20, payable to ,

for one year's subscription to P.O.Box 16097, Oakland CA 94610-9991.

> Bay Area Support Groups for Women with Problem Implants

Survivors of Silicone (SOS), San Ramon. Call Diane s, 510-

7983709.

> Greater Sacramento Area

> STAND (Silicone Toxicity and Neurological Disorders) Write

STAND, P.O.Box 3443, Citrus Heights, CA 95611.

> Silicone Problem Awareness (SPA),

> Sonoma County. Contact Diane Mc, P.O.Box 965, Eldridge CA

95431

> San Joaquin Silicone Survivors,

> Kingsburg (near Visalia). Contact Jackie Hall, 545 E. Prospect

Avenue, Visalia, CA 93292.

> Support groups in other regions:

> Southern California

> Command Trust Network,

> Sybil Goldrich, 256 South Linden Drive, Beverly Hills CA 90212.

> Phone: 310-S56-1738.

> Silicone Scene, 1050 Cinnamon Lane, Corona, CA 91720

> Breast Implant Information Foundation (BIIF)

> P.O.Box 2907, Laguna Hills CA 92654-2907/ Phone: 714-448-9928.

> Nevada

> Women Informed Now (WIN)

> Write WIN - El Requa, 3797 Decade Street, Las Vegas NV 89121.

Phone 702-4561121.

> Arizona

> Women Empowered Inc (WEI)

> Write WEI, 1800 E. Fort Lowell Rd., Suite 128, Box 125, Tucson AZ

85719.

> Phone: 602-791-9641

> Women's Informational Network (WIN)

> 6530 North 3rd Ave., #1, Phoenix AZ 85013. Phone: 604-264-1829.

> Colorado

> Coalition of Silicone Survivors (COSS)

> P.O.Box 129, Broomfield, Colorado 80038-0129 (Denver area)

> Phone: 303-469-8242.

> Kentucky

> Command Trust Network

> Kathleen Anneken: P.O.Box 17082, Covington, KY 41017. Phone: 606-

331-0055.

> Or you can contact Project Impact to find a support group near

you.

> Helpful books on problem implants

> The Silicone Breast Implant Controversy by Dr. Vasey,

published by The Crossing Press, P.O.Box 1048, Freedom CA 95019.

$20.95 plus $2.00 shipping, or call 1-800-777-1048 to order.

> The Untold Truth by Patti Scher and n Koch, two women with

implants and related health problems. To order, send a check for

$19.95 to Patti Scher, P.O.Box 26923, Charlotte NC 28221.

> Siliconegate by Dr. Henry , retired plastic surgeon who

expressed concern about silicone implants long before the FDA began

to question them. To order, send $22.95 to Siliconegate, P.O.Box

952, Siloam Springs, AZ 72761, or call 1-800-574-2978 and use a

credit card to order.

> Safety Last chronicles the history of polyurethane implants. To

order,

> y of polyurethane implants. To order, send $19.95 to Key Porter

Books, 2775 Matheson Blvd. E. Mississauga, Ontario L4W 4P7, Canada.

>

>

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[Guest guest]

I think groups were linking to each other at one time

.. . . I can't remember what the term for the link was

.. . . something like " silicone web ring " ? Lynda would

know.

I don't have a problem with multiple groups . . .

Hopefully everyone can find a group where they feel

comfortable! . . . I do like the idea of linking

groups though!

It would be helpful to have email addresses/ or web

links for the groups, if they're still around.

I think some of the groups went away as settlements

were made . . . Also, many leaders in the old groups

became too sick to handle a group . . .

I see Lynda's group listed though! . . . I'm so glad

she's here!

Hugs,

Rogene