Becoming Part of the Solution
Is there anything we can do as individuals and as a nation to halt this epidemic – or at least lower the stakes for future generations? One step I’d propose is to take a page from European environmental policy, which uses the precautionary principle — an approach to public health that underscores preventing harm to human health before it happens. In June 2007, the European Union implemented legislation known as REACH (the Registration, Evaluation, Authorization and Restriction of Chemical Substances). REACH requires chemical and industrial companies to develop safety data on 30,000 chemicals over the next decade, and places responsibility on the chemical industry to demonstrate the safety of their products. By contrast, in the U.S., chemical companies are not required to do any testing to ensure chemicals do not harm the immune system. Chemicals are presumed innocent – unless scientists can prove otherwise, which can take decades and can only be done if there is a source for funding.
It would also be helpful to raise more public awareness about the problem by giving the environmental triggers of autoimmune disease a name. Despite all this mounting evidence, there still exists no word comparable to “carcinogens” in our cultural lexicon to describe the notion that environmental chemicals might be linked to autoimmunity. The term “autogen,” I believe, would prove useful to refer to the toxins, viruses, and every day chemicals we know can play a role in triggering autoimmune disease.
The National Institutes of Health recently stated that investigations of exposures to chemicals as triggers for autoimmune disease are now of “considerable research interest.” That may be true, but they have yet to show researchers the money. With 24 million Americans – and one in nine women – suffering from autoimmunity, the NIH allocates only $591 million dollars for autoimmune disease research each year. Contrast that with the $5 billion annual budget for cancer, which afflicts 9 million Americans. The NIH budget for cardiovascular disease – which affects 22 million Americans – is four times that of autoimmune diseases. We have waited too long for Congress to allocate funding to find out what toxic exposures, or combination of exposures, can cause our immune systems to turn against us. Congress needs to do better.

Donna Jackson Nakazawa is a nationally acclaimed researcher, writer and public speaker on health and family issues. She is the author of the recent book, The Autoimmune Epidemic.

May 4th, 2008 at 10:04 am
Is there still no national registry? Is there a way we can start one?
February 2nd, 2009 at 6:10 pm
Dear Donna,
Your thoughtful reply to my last e-mail meant the world to me. I am certain I am one of a million people that has a story to tell, and a frustration with a feeling of an inability to help. Each day I am dealing with a consciousness regarding my illness that I can not escape from. There is nothing spontaneous about my life any longer, and everything I do is handled with great planning and thought. However, to keep my sanity I have decided to look at managing my health as “my job,” as I no longer can work the full time job that I loved so much. I am writing to you to beg the question, “How do you believe that I can help?” Is there something that I can do with you, for you, related to your work to keep opening the crack of the minds of the medical communities about how important it is to take a closer look at this epidemic. This has been one of the hardest winters for me so far in Buffalo, and the first time that my husband and I have truly considered uprooting our family and leaving the home and friends we love, to possibly find a place to live that may provide me with a better quality of life. In my spells of wellness I want to find a purposeful way to make a difference. I am always ready to be a part of the process. Please keep me in your thoughts, and hopefully one day I will be fortunate enough to speak with you and learn more.
With gratitude,
Kerry Hughes
Buffalo, New York
February 12th, 2009 at 8:39 pm
Kerry,
I too suffer from some form of inflammation currently. Im trying to improve my diet and think positively and involve myself in exercise. Sometimes i feel down too. Do you want to exchange email for words of encouragement? I live in Asia and my email is ver_tay@yahoo.com.sg
Vern
Singapore