Fw: All but Forgotten ~ Once the center of a national debate, women who say silicone breast implants made them sick now find themselves ignored ~ LATimes

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From: " ilena rose " <ilena@...>

" Tinker Ready " <tinkerr@...>

Sent: Sunday, September 30, 2001 10:12 PM

Subject: All but Forgotten ~ Once the center of a national debate, women who

say silicone breast implants made them sick now find themselves ignored ~

LATimes

>

http://www.latimes.com/features/health/la-011001implant.story?coll=la%2Dhead

line

> s%2Dhealth

>

> All but Forgotten

>

> Once the center of a national debate, women who say silicone breast

> implants made them sick now find themselves ignored.

>

>

> Silicone breast implant

> (BARRY FITZSIMMONS / San Diego Union-Tribune)

>

>

> By TINKER READY, Special to The Times

>

> In the made-for-TV movie about two women who took on Dow Corning Corp. and

> other medical device makers over the safety of silicone breast implants,

> the women emerge as winners. In real life, P.J. Brent's story did not have

> such a happy ending.

>

> Like the movie heroines, the Atlanta mother of six believed she had been

> poisoned by leaking implants. But by March 2000, when she testified before

> the Food and Drug Administration, public and scientific opinion had

> shifted. Many scientists and doctors now consider the breast implant scare

> to be nothing more than a case of junk science meeting legal excess. Brent

> told the panel that silicone ruined her health and harmed two of her

> children whom she breast-fed. But a Pennsylvania pediatrician contradicted

> her, telling the FDA that there is no scientific evidence linking Brent's

> implants to her children's severe leg numbness, rashes and difficulty

> swallowing.

>

> Brent's story ended a few months after the FDA hearing. One summer

morning,

> she drove to the top of a five-story parking garage at a shopping mall in

> suburban Atlanta, climbed over the railing and leaped to her death.

>

> " She said she was going grocery shopping, and 30 minutes later she was

> dead, " her husband, Ed Brent, said.

>

> For years, women like Brent who blame breast implants for chronic

illnesses

> had lawyers, activists, journalists and a small but determined group of

> doctors and scientists to back them up. Plagued by fatigue, constant pain

> and memory loss, the women were the subject of talk shows, scientific

> papers and scores of published articles. They filed lawsuits by the

> thousands and began winning cases with multimillion-dollar damage awards.

> In one 1992 case, a Texas woman was awarded a whopping $25 million.

>

> Then, in the mid-1990s, their cases began to unravel. New research failed

> to find a connection between their symptoms and their implants. Even as

> breast implant manufacturers agreed to a record-breaking class-action

> settlement, prestigious medical journals were publishing studies

concluding

> that women with implants were no more likely to be sick than the rest of

us.

>

> Today, 10 years after the FDA removed silicone implants from the market,

> doctors, implant makers and regulators cite these studies as irrefutable

> evidence that silicone implants are safe. Indeed, breast implant

> procedures--now using saline implants that have a silicone coating--are

> more popular than ever in this country. About 267,000 U.S. women had

> implant surgery last year, more than twice the number that did so in 1996,

> according to the American Society of Plastic Surgeons. And a new type of

> firmer silicone gel implant, already available in Europe, is being tested

> as part of the manufacturer's plan to introduce it in the United States.

> Meanwhile, some women have sought out underground clinics and house

parties

> where they can get illegal silicone injections to smooth facial wrinkles

or

> fill out their breasts and lips.

>

> For many women, however, the years since the implant controversy dropped

> from the front pages of newspapers have been especially hard. They feel

> doubly victimized by the flip-flop in public, legal and scientific opinion

> on this issue. Despite evidence to the contrary, many of these women still

> insist their implants triggered chronic, debilitating illnesses. They

> suffer health problems ranging from joint pain to lupus to multiple

> sclerosis but now find themselves cast not as victims, but as frauds. Many

> feel a sense of betrayal from doctors who no longer take their complaints

> seriously, from lawyers who once courted them and now refuse to take their

> phone calls, and from the media, which once played up the dangers of

> silicone implants and now largely ignore their stories.

>

> " It is depressing to continue to be sick, know why you are sick and have

> people tell you that implants are perfectly safe and it's all in your

> head, " said Margaret Melvin, an Orlando, Fla., woman who hosts a Web site

> discussion, called " Silicone Holocaust, " http://www.siliconeholocaust.org/

> on implant safety. " Depression is one of the biggest things we battle. "

>

> P.J. Brent's suicide was not the first among women who believe they are

ill

> from implants, Melvin noted. Women with silicone breast implants are four

> times more likely to commit suicide than other plastic surgery patients,

> according to a study by the National Cancer Institute.

>

> At the time of her death, Brent seemed depressed by her own fatigue and

her

> struggle to get confirmation for the link between her implants and her

> children's health problems, her husband said. " That's the only explanation

> I can give you as to why she took her life, " Ed Brent said.

>

> All of the implant companies, except Dow Corning, agreed to a class-action

> settlement in 1994 that was supposed to deliver some relief and

vindication

> to these women. Instead, it has only added to their disappointment. On

> paper, at least, it appeared that thousands of women would be eligible for

> payments of up to $1.4 million. But legal sources say few women received

> more than $50,000. A small group of financially strapped implant suppliers

> paid out as little as $700. (All of the women agreed not to disclose

> settlement amounts.)

>

> And tens of thousands of women who had Dow Corning implants have received

> no money at all. That company, which made the silicone gel used in the

> implants, set up a separate $3.2-billion settlement plan in 1998 and

> declared bankruptcy soon after. So the settlement has been tied up in

> bankruptcy court since then. Women like Melvin, who opted out of the

> class-action settlements to pursue their cases in court individually, have

> not fared much better. In many cases, lawyers now refuse to take their

> cases because they say the odds of winning are too low.

>

> Still, the debate over the science of implant safety quietly persists.

Some

> consumer activists and scientists who launched this debate years ago

> contend that much remains unknown about the health risks of silicone

> implants. They contend there are flaws in the research that concluded

> implants pose no safety risk, saying those studies did not include enough

> women or follow them long enough to detect diseases that can take 10 years

> or more to develop. They say that a series of pending studies by the

> National Institutes of Health of 13,000 women will provide more definitive

> answers by following more women for a longer time period. They also cite a

> recent, separate FDA study that, for the first time, looked at women with

> ruptured, leaking implants. The researchers found women with silicone that

> had leaked from their implants and beyond the chest area were much more

> likely to develop chronic diseases, including lupus and fibromyalgia, than

> women with intact implants.

>

> But such information doesn't help women like Margaret Melvin cope with the

> everyday realities of life. Melvin had her leaking silicone implants

> surgically removed in 1992. But two years ago, BlueCross/BlueShield of

> Florida rejected Melvin's application for an individual insurance policy,

> citing the company's policy to not sell individual policies to women who

> had experienced a ruptured silicone implant.

>

> " This is because there is still a potential for further health problems

> after removal, " a company representative wrote in a September 1999 letter

> to Melvin.

>

> Melvin says she contacted 20 lawyers but none would pick up her case after

> her first lawyer insisted she settle. How could her silicone-related

health

> problems be considered real enough to justify an insurer's decision to

deny

> coverage yet insufficiently valid to make a case in court, she wonders.

> " How, " she asks, " can they have it both ways? "

>

> The tide began to turn in the implant debate in 1996 when a federal judge

> overseeing a class-action suit against implant makers convened a

scientific

> panel to examine a pile of conflicting research. At about the same time,

> Congress also stepped in to help sort out the science. Stuart Bondurant,

> the dean emeritus of the University of North Carolina medical school,

> headed the congressional panel, which was based at the prestigious

> Institute of Medicine. By then, more than 1.5 million U.S. women had

> silicone implants and roughly 1,200 scientific papers had been written on

> the issue. Bondurant's group issued its report in 1999, concluding that

the

> evidence linking silicone implants to serious illness is " insufficient or

> flawed. " The court-ordered study came to a similar conclusion.

>

> " There are many, many women with terrible diseases who have breast

> implants, " Bondurant said in a recent interview. " And those women are

> convinced that the implants have caused their disease, but the scientific

> evidence does not support that. They are still sick, but the position the

> committee takes is that it is not the implants causing these diseases. "

>

> The Institute of Medicine report was not intended to be the last word, but

> many doctors, judges and journalists have interpreted it that way, said

> Zuckerman, the director of the National Center for Policy Research

> for Women & Families, a Washington, D.C.-based think-tank. As a result,

the

> two reports had " an enormous chilling effect " on both the legal case

> against implants and the potential for further research, she said.

>

> " It's a travesty, " said Zuckerman, an epidemiologist and former Capitol

> Hill aide who organized the first congressional hearing on implant safety.

> " The women are desperately trying to get someone to help them. They are

> told it is in their head, and they are treated as if they are just out to

> get money. "

>

> Zuckerman and others have put their faith in several government studies.

> One FDA study suggests that women with silicone in their bloodstream may

be

> more vulnerable to health problems, she said. And the first of several NIH

> studies found that women with implants are more likely than other plastic

> surgery patients to take their own lives or die from brain tumors and lung

> cancer.

>

> Bondurant remains unconvinced by these new findings. " If one or two

studies

> came out to the contrary, it would not be enough to upset the [iOM]

> conclusion, " he said. " On the other hand, research is never complete.

There

> will always be an element of uncertainty. "

>

> Sybil Niden Goldrich, one of the women depicted in the 1997 television

> movie " Two Voices, " helped push the FDA to take action on implants. Now

62,

> she survived breast cancer and a double mastectomy. But, Goldrich said,

she

> was in pain for years after Beverly Hills doctors rebuilt her breasts

> several times with silicone implants in the early 1980s. Today, her

> implants are long gone and she considers herself healthy. Her

organization,

> the Command Trust Network, is virtually inactive. She spends most of her

> time working as the consumer representative to the Dow Corning Settlement

> Fund, which is likely to begin making payments next year. Still, Goldrich

> lives up to the movie's German title, " Eine Frau Gibt Nicht Auf, " or " a

> woman who doesn't give up. "

>

> " There was an enormous number of people injured, " she said. " No one wants

> to take responsibility for it, and everyone wants to blame the victim.

> These women have all of these symptoms, no place to turn and no money to

> pay for it. "

>

> It can be a terrifying and lonely experience to suffer from an illness

that

> has no apparent physiological cause, said Lana Teirsky, an assistant

> professor of psychology at Fairleigh Dickinson University in New Jersey.

> Her research has focused on conditions such as chronic fatigue syndrome

and

> Gulf War syndrome. Women with silicone breast implants have the added

> trauma of being exposed to a chemical, being told it is making them sick

> and then being told that it isn't, she said.

>

> " They feel very invalidated, " she said. " They feel that no one is

listening

> to them. " So they get depressed, only to be told that depression is

causing

> their physical problems, she said.

>

> And doctors have little to offer them beyond antidepressants, even though

> research has shown that they can successfully treat many similar

conditions

> without identifying a cause, said Dr. Dush, a psychologist at

Central

> Michigan University. For example, patients with chronic fatigue syndrome

> improve when treated with a combination of antidepressants, physical

> therapy and counseling. But after reviewing the implant research, he found

> that no one has explored the possibility of using a similar approach for

> sick women with breast implants.

>

> " When the [implant] research reached the conclusion of no increased risk,

> it didn't go anywhere else, " he said. The women " are just kind of left on

> their own. "

>

> So they turn to each other, mostly through Internet support groups, where

> they trade stories, find doctors willing to remove implants and vent their

> anger. Often, it is not enough. " Realistically, what these groups do is

> provide information and shoulders to cry on, and that's all they can do, "

> Zuckerman said.

>

> Ashby won't choose silicone, but she is choosing to replace the

> saline implants she had taken out in 1994. Like many others, she finds

> comfort in the studies that have found implants to be safe. " I got caught

> up in all the media hype, " Ashby said. " I read about all these women who

> were getting sick, and I thought it was happening to me. "

>

> Ashby, a Raleigh, N.C., mother of two, got implants after two pregnancies

> left her with " small, saggy " breasts. She says she soon began to feel

aches

> and pains and, at one point, was diagnosed with fibromyalgia.

>

> Although much of the focus has been on silicone implants, many women

insist

> that the silicone shell in saline implants can cause problems. So Ashby

had

> the implants removed, and her health recovered. She now believes that she

> overreacted to the implant scare and that her symptoms were " all in my

> head. "

>

> Thorpe also wanted her silicone implants removed, but her insurance

> company refused to pay for the surgery.

>

> In 1992, she came to symbolize the emotional despair of some women when

she

> cut her implants out with a razor blade. This dramatic act got the

> Farmington, N.M., woman on TV talk shows but did little to improve her

> health, said her daughter, Chrissy Thorpe.

>

> Confined to her bed, Thorpe had a seizure and choked to death on her

> own vomit in 1996. Even though " silicone breast disease " is listed as a

> contributing factor on 's death certificate, Chrissy acknowledges

that

> something besides implants may have caused her mother's illness.

>

> " It's hard to say, " said Chrissy, noting that her mother was in perfect

> health before she got her implants. " But it would be a pretty sick

> coincidence. "

>

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