Call Notes
1. Welcome: Michael Lerner
Welcome to our third CHE Partnership Call. This past month we added 96 new individual partners and 9 organizational partners, bringing the total network to over 350 partners. We are encouraged at the depth of engagement and welcome all of you.
2. Science Update: Pete Myers, Ph.D.
We are adding more and more information to the science section of the CHE website every day. This can be accessed through the CHE website, or directly at www.protectingourhealth.org. The science articles discussed below are provided online. Ted Schettler wrote a great piece on the Precautionary Principle and Public Health which all CHE Partners should be acquainted with. There is also a collection of articles from the recent issue of San Francisco Medicine that feature CHE Partners. In addition, Linda Birnbaum has a new article on breast cancer risk in relation to early exposures. There is also an interesting article on how adult exposure to phthalates can damage sperm.
3. Science Update: Ted Schettler, M.D., M.P.H.
We have 9 papers online that have completed the first internal review. We welcome participation in the review process as we identify experts to complete the external review process. Please contact Ted if you would like to participate, or know an appropriate expert, at: tschettler@igc.org.
We also have a section on Core Themes that include papers on the Precautionary Principle, Chemical Mixtures and The Dose Makes the Poison. The CDC will be releasing their biomonitoring information at the end of January. This round of testing includes a broader range of chemicals and begins to give us a clearer sense of what we're finding in our bodies. More will be discussed at the end of the call.
4. The Endometriosis Association: Mary Lou Ballweg and Lynn Castrodale
The Endometriosis Association is a pioneer in the field of patient-led groups. The organization began in 1980 with support services and soon developed a research registry that took a holistic approach and looked at the entire family unit, instead of just the patient. They found that immunotherapy worked for women, but they didn't know why.
In 1992 there was a major break-through. Rhesus monkeys developed endometriosis from dioxin exposure and the clear link between dioxin and endometriosis in humans was established. Industry fought hard against their work, but it only gave them more motivation and showed them that they were on the right track.
Research throughout the 90's showed that women with endometriosis have higher rates of autoimmune diseases in their families (hypothyroidism, fibromyalgia, lupus, MS, to name a few). They are also more at risk for certain cancers: ovarian, breast, non-hodgkins lymphoma and melanoma.
The Endometriosis Association turned to Commonweal and Health Care Without Harm because they wanted to keep their children from getting this disease.
As the research grew, they felt that they had more than enough information to take action. Large groups of women were making the connection between their health and the environment and they were angry. The Endometriosis Association worked to help channel that anger into advocacy work, providing materials for hope, action and ideas. In their upcoming book the theme of the environment is woven throughout because it is such a key element.
5. Questions
Do you provide hard copies of information, or only online?
A: They always have hard copies of materials, including video and audio tapes.
When women are removed from exposures, does the endometriosis improve?
A: We don't have any research on that yet.
Are women feeling overwhelmed and isolated? How do you engage them in action?
A: We start with their own personal experiences and begin with things that they can control. For example, we show them how to talk to their doctor, especially if they're having surgery, tell them about cosmetics, and what they can do in their own home. Women with endo often have multiple chemical sensitivity as well. They may not realize that small changes can really help.
What other health outcomes are you seeing?
A: We are just starting to look at children of women with endometriosis. Endometriosis is a disease of the control mechanisms of the body. We expect to see greater connections to other diseases, Enzymes, hormones and growth factors - it doesn't take much exposure to disrupt the systems. We believe that much of this is happening in utero.
Parents want practical items (what floor cleaners to use, etc.).Cheryl Greene said that she will review and link to the Endometriosis website from her pediatric site DrGreene.com.
What has been industry's response?
A: Having solid science made the difference, but we have taken hits. Our phones were bugged, our scientists were poisoned and they broke into our computers. It hasn't been easy.
What outcomes have you found with kids?
A: We don't have the complete data on children yet.
Are you looking at the cellular mechanism of dioxin?
A: Yes, We're looking at how they change the endometrium.
What percentage of endometriosis is tied to dioxin exposure?
A: We don't know yet. The most important exposure is pre-natal.
Collaborative opportunities were made between researchers at Columbia working on endometriosis and The Endometriosis Association.
6. CDC Biomonitoring Data Released
January 29, 2003 the CDC will release the body burden data on the pooled blood and urine samples of the American people. Over 100 chemicals were tested, including PCBs, dioxins and organophosphates. This is a key issue for CHE Partners.
We want to create a menu of options to support CHE Partners who would like to spread the word about this issue. We will develop a tool box of fact sheets, press releases, experts and general body burden information.
This is a non-partisan issue that includes the Right to Know, health tracking and biomonitoring, and their health effects. Charlotte Brody is leading this effort. If you are interested and would like more information please contact her at: cbrody@hcwh.org.
7. Ideas for Future Calls
Continue with science updates. They're very useful. Breast milk Please direct future ideas to Jeanette Meyers.
8. Next CHE Call
The next CHE call will be January 22nd at 9:00 Pacific, 12:00 Eastern. Please RSVP to Jeanette if you plan to join us jeanette@healthandenvironment.org.
