This is a story about corporate greed, says Judith Helfand. And the belief that there really is better living through chemistry. It's a story about lies and videotape. It's a story whose next chapter might be written in Utah.
Pay attention, she says.Helfand's story begins in 1963, eight months before she was born. You've already had one miscarriage, the doctor told her mother, but don't worry. We can give you this synthetic hormone, DES, that will ensure you a healthy baby. It's perfectly safe, the doctor said. It's a wonder drug.
Judith was the healthy baby born in 1964 to Florence and Ted Helfand. You couldn't tell by looking at her that anything was wrong.
But in 1990, when she was 25, Helfand was diagnosed with a rare form of cervical cancer that required a radical hysterectomy. She is one of at least 600 "DES cancer daughters" already diagnosed with reproductive cancer, a problem now believed to start in the womb following exposure to DES. She is one of perhaps 10 million mothers, daughters and sons who were DES-exposed in the 1940s, '50s and '60s.
Helfand went home to her parents' house, a little red wooden rambler on Long Island, to recuperate from the hysterectomy, and to grieve for the children she will never have. It was there that she decided that her story had to become public because her disease was public - and political.
"It's not a private thing we're going to keep in our own house," Helfand said then. The quote is on videotape because by then Helfand had already started documenting this part of her life. She borrowed her cousin's video recorder, set it on a tripod and began filming herself and her parents.
It was a shaky start. Later she was able to hire a professional cameraman. Later still she was able to hire editors and a producer. The result is a disarming and touching documentary, "A Healthy Baby Girl," that debuted earlier this week at the Sundance Film Festival. (A second screening runs Friday, Jan. 24, at 9 p.m. at Holiday Village III in Park City.)
What she wanted to show, says Helfand, is that the impact of toxic exposure occurs in real people's lives. It affects families in bedrooms and over breakfast tables, as they struggle day-to-day to live with fear and mourning.
What she also wants people to consider, she says, is that DES is not an isolated example of chemistry gone awry.
DES is diethylstilbestrol, the first synthetic estrogen ever manufactured. Its purpose was to prevent miscarriage; its unintended effect was to alter the reproductive systems of some of the offspring of the mothers who took it.
But DES is only one of many synthetic chemicals that may have similar effects on our bodies, says Helfand. DES is just the proof. It's the other chemicals, she says, that we now should worry about.
And that's where the Utah connection comes in, says Helfand, because in addition to all the usual toxic chemicals Americans are exposed to every day - from municipal incinerators and plastic water bottles and pesticides and meat - Utah also has chemical weapons incinerators.
"The emissions from the nerve gas incinerators are pumping out chemicals that have the same effect on the human body as DES does," charges Helfand.
Her hope is that Utahns and others will form an alliance around toxic exposure issues - "so somebody else's children can have children."
Whether the concern over emissions from the weapons incinerators is valid or alarmism depends on whom you ask.
The Utah Division of Solid and Hazardous Waste reiterates its position that the incinerators are operating safely and that risk assessments have shown no unacceptable risks. And there are plenty of scientists who are reluctant to make a definitive link between environmental toxins and human health.
But Helfand can put you in touch with doctors and scientists and activists who share her fear about the incinerators, and about other chemicals in the environment.
Chip Ward of West Desert HEAL, a Tooele-based watchdog group, was at Sunday's screening of "A Healthy Baby Girl" and spoke afterward to the audience.
In addition to the potential dangers of the chemical weapons themselves - in the event of an accident or earthquake at the incineration site - there is another danger, says Ward.
When the Army burns nerve gas and other chemical weapons in the incinerators, says Ward, the byproduct of that burning is a group of chemicals called dioxins.
Dioxin was made famous by Agent Orange and Times Beach. Originally it was dioxin's link to cancer that caused alarm, says Ward. Now it looks like cancer may be only the warm-up act, just a symptom of bodies out of control.
Dioxins, as well as many other chemicals, are considered by some scientists to be "endocrine disrupters" - that is, they interfere with the proper function of the body's hormones. Since hormones are the body's mailmen - delivering messages about gene regulation and cell function - when they malfunction the results can be disastrous. The damage can include reproductive problems, developmental problems, cancer and an impaired immune system.
Ted Schettler, a Massachusetts physician and member of Physicians for Social Responsibility, is co-author of the recently published "Generations at Risk," a book about toxic exposure.
Dioxin is toxic even in extremely small doses, says Schettler. And a developing fetus is the most vulnerable to exposure.
In one experiment, pregnant rats given less than a millionth of a gram of dioxin per kilogram of body weight just once during pregnancy produced males with lifelong lower levels of testosterone, fewer sperm and "abnormal sexual behavior."
This is what we know about endocrine disruptors such as dioxin and DES, says Scott Endicott, a research biochemist at the University of Utah and a dioxin spokesman for the Sierra Club:
- Endocrine disrupters are persistent. They're not easily broken down by sunlight or air. They attach themselves to other particles in the air, then settle down into soil or lake bottoms.
- They're world travelers. So chemicals emitted in, say, Utah could end up somewhere else.
- They "bioaccumulate." Animals eating plants contaminated with dioxin, for example, store the chemical in their fatty tissue. Bigger animals eat smaller animals and store even more of the chemical. And at the top of the food chain, humans get the biggest dose, inheriting all the toxic chemicals down the line.
We may already have nearly reached our "body burden" of endocrine disrupters, says Endicott. An EPA report on endocrine disrupters is due out soon and may shed light on this issue.
- The effect may be "synergistic." That is, one toxic chemical may react with another toxic chemical and produce toxicity that is more than just the sum of the two. "So even if there is just a trace amount in the environment," says Endicott, "it becomes a big concern."
"I'm not an alarmist and I don't want to come off that way," says Endicott. "But there's definitely a concern here."
The chemical weapons incinerators are just one part of the problem, he says. The Davis County burn plant may be just as bad or worse - a point that chemical weapons incinerator proponents also point out.
`Is it a greater risk than what's already out there?" asks Joe Paul about the nerve gas incinerators. Paul is with the National Center for Environmental Health, a division of the government's Centers for Disease Control. Dioxin emissions from the incinerators are "so low we can't see it's a problem," he says.
But why add one more source, say scientists like Scott Endicott. Let's be vigilant about them all, he says.
"People say we don't have proof (that endocrine disrupters cause health effects in humans). But we weren't careful about DES or thalidomide or DDT. We're beginning to realize we should have been worried."
Judith Helfand points to the misleading reassurance about DES from pharmaceutical companies during the 1950s, '60s and '70s.
Even from the start, says Helfand, there were clues linking DES to cancer and reproductive problems.
In 1938, the same year DES was first synthesized, a study showed that mice exposed to DES developed breast cancer, she says. A year later, other studies of mice exposed to DES in utero linked the hormone to malformed reproductive organs.
The 267 drug companies that later made and sold DES conducted no studies of the drug's safety during human pregnancy. In 1953, though, a controlled study did show that the drug actually did not prevent miscarriage. And in 1959, after it was discoverd that high doses of DES used to fatten livestock caused health problems in agricultural workers, the FDA banned the use of DES in chicken and lamb.
The drug companies continued to market DES for pregnant women for another 19 years. It was finally banned in 1971 after a study linked in-utero DES exposure to a rare vaginal cancer in young women.
Now, in addition to these cancers, it is believed that DES can cause structural damage to reproductive organs and severe infertility in DES sons and daughters; high-risk pregnancies and miscarriages in DES daughters; increased risk of testicular cancer in DES sons; increased risk of breast cancer in DES mothers; and possible immune system impairment in everyone exposed.
And there are still other health worries. Linda Wolfrey, a DES daughter living in Provo, now has lymphodema so bad in her legs that she can't work as a nurse. The lymphodema is a result of scar tissue caused by the surgery and radiation to rid her of the clear cell cancer caused by DES.
And there is always the risk that the cancer will recur. Several of the women Helfand interviewed for "A Healthy Baby Girl" have since died.
Helfand hopes her story will be a cautionary tale.
"I hope my experience, which is very real and won't go away, can be used in a positive way so we don't repeat this scenario, so that people don't have to lose chunks of their bodies, and their futures."Comment on this story
Like DES, she says, other chemicals may not reveal their damage for years to come, perhaps not until the next generation. Helfand is fond of a quote from Mark Twain: History doesn't repeat itself, it rhymes.
"You might not think DES rhymes with nerve gas incinerator," says Helfand, "but it does."
For more information about DES, contact DES Action, 1-800-DES-9288 or the DES Cancer Network, 1-800-DES-NET4. For information about DES Cancer Daughters in Utah, contact Linda Wolfrey at 801-373-3885 or firstname.lastname@example.org.
"A Healthy Baby Girl" will be shown on PBS sometime during 1997.