A Voice for People with MCS
Thank you for making multiple chemical sensitivity (MCS) the subject of this issue. This will give patients a much needed morale boost as there has not been much progress on this issue for the last several years. If anything, the industry view of MCS has become even more entrenched and patients are suffering as a result.
Several medical societies have adopted the industry-coined term "Idiopathic Environmental Intolerances" and industry approved positions, which is essentially moving people who claim to be sensitive to chemicals, into the mental health system.
In the state of Washington, except in very rare cases, we have lost. I think it would be safe to say the position government, doctors, insurance carriers etc., have adopted with regard to MCS can be found in the writings of doctors who have published articles that determine MCS to be a purely psychological illness.
The few doctors who were willing to support their chemically-injured patients in L&I claims and the court, have stopped doing so in recent years. A few years ago some of these doctors had anonymous complaints filed against them with the Medical Quality Assurance Commission. These doctors are now working on a short leash with regard to keeping their medical licenses. Other doctors have been trained to reject a chemically injured person as a patient – because some don't believe them and also to steer clear of becoming involved in controversy.
People with MCS have been successfully marginalized in this state (and elsewhere too). Some are still visible to the mainstream medical community through a few doctors who try to help their patients by treating the symptoms, usually with drugs, using care to avoid controversial terminology in the medical records. Other patients are seen by the alternative medical community where there are probably more successful therapies being used. These patients, from my observation, are living a higher quality of life and appear to be more functional. But to have access to this venue, the patient must pay out of pocket.
This is another group of patients that is largely invisible. They are the people who don't have the funds to pay for medical care and must rely on the "state sanctioned treatment protocol" for chemical injury. I recently learned of a case that could serve as the success story of the doctors who turn down MCS claims.
Years ago, this man had a job painting center lines on streets. During the course of his work he became very ill from exposure to the lead paint. He is currently living on welfare – $337 a month and $10 in food stamps while he appeals his second denial of Social Security Disability, after having lost his worker's comp case in Idaho. He lives in an apartment complex for disabled people on welfare, particularly the emotionally disturbed. The complex is treated with pesticides and cleaning solvents and is subject to other chemical exposures. His medical treatment consists of psychiatric care which includes prescription drugs. In the past, he was on several psychotropic drugs, until severe depression caused him to seek help at the local hospital. He is now on one medication for chronic pain but his health has deteriorated to the point that he is in a wheelchair. And as anyone would be hard pressed to survive on $337 a month, he begs on the streets of Bellingham, Washington to make ends meet.
Anyone familiar with MCS can see that this man's life is hell on earth. Unfortunately, this is not a unique situation – others with MCS are leading equally difficult lives. And frankly, even those who are currently with funds, are only a divorce or reconsideration of Social Security disability away from joining him.
Eventually, research will vindicate people with MCS. Meanwhile our mainstream medical community has embraced a policy of stigmatizing and some even resort to ridiculing, those who claim to be sensitive to chemicals. Worst of all, they advise people to disregard the need for these patients to avoid chemical exposures. The mainstream medical community has failed in its most basic regard for the human rights and human dignity of people affected by MCS.
In contrast to that failure of the medical community I want to thank you for opening the pages of Townsend Letter to what I hope will be a good discussion and greater understanding of this growing health problem.