Thursday, October 16, 2008

Multiple Chemical Sensitivity: A Hidden Disability

(Note: This is my tenth post under the auspices of the nurse blogger scholarship which I recently received from Value Care, Value Nurses.)

There is a hidden disability among us, and nurses must become aware of its existence and champion the cause of so many individuals who suffer in relative silence and medical neglect.

That hidden disability is Multiple Chemical Sensitivity (MCS). This article will introduce MCS, its symptoms and proposed etiology, and provide resources for nurses who wish to become more conversant with the vicissitudes of this very modern illness. As a nurse living with MCS, I see it as my mission to bring this condition to the awareness of nurses and other medical professionals, thus increasing knowledge, understanding, compassion, and available treatment options for the many sufferers of this much misunderstood and unacknowledged condition.

Multiple Chemical Sensitivity is a chronic health condition afflicting many people throughout the world. Individuals with MCS report a variety of symptoms when exposed to varying levels of chemical or fragrance exposure, including but not limited to headache/migraine, shortness of breath, confusion, irritability, dermal erythema/rash, mood changes, anxiety, throat irritation, dysphagia, bronchospasm, asthma exacerbation, and burning eyes. Standard diagnostic tests generally do not elicit confirmation of chemical sensitivity, and MCS has yet to be officially acknowledged by the American Medical Association as a physiological illness, relegating this very real condition with very real physical symptoms to the realm of psychosomatic disorders. Encouragingly, The Americans with Disabilities Act, Social Security Administration, Department of Housing and Urban Development, and the Environmental Protection Agency all recognize MCS as a legitimate disability in need of full accommodation (Kendall, Katherine. "Accessible Health Care and Chemical Sensitivity", Environmental Health Coalition of Western Massachusetts, 2006, PO Box 187, Northampton, MA, 01061.)

Since World War II, thousands of unregulated chemicals have been introduced into our environment. Through the mediums of household conveniences, modern packaging, air fresheners, cleaning agents, and a multitude of hair and personal care products, many chemicals which are known carcinogens (and often banned in other Western countries) are applied daily to the skin of unknowing individuals, aerosolized into the air we breathe, or even transmitted through breast milk or across the placenta to our children's growing bodies. An astronomical number of chemicals with known neurotoxic effects are used to produce a plethora of personal care products, and due to lack of regulation to protect proprietary trade secrets, citizens' health is regularly compromised.

A growing body of literature is continuing to document the physiological effects of chemicals on multiple human organ systems. A 2006 study by the University of Colorado and and Baylor College of Medicine in Houston clearly drew conclusions linking chemicals in commercially available air fresheners to the formation of cancerous cells. Another study by Anderson Laboratories in Vermont showed a direct correlation between exposure to commercial perfumes and acute neurotoxicity and air flow reduction in mice. Additionally, a German study found a potential genetic link vis-a-vis sensitivity to chemicals in the form of L-Glutathione, a endogenous hepatic chemical important for the detoxification of exogenous chemicals and irritants.

While some workplaces have begun to initiate "fragrance-free" policies to protect workers and clients alike, even the real estate industry is beginning to notice the economic impact that chemical exposure can have on prospective home buyers. The Investor Environmental Health Network also recognizes the economic risk posed by chemical contaminants in products and homes, with reports of shareholders withdrawing support for investments in companies whose products contain ingredients known to be harmful to human health, as well as those ingredients which have never been tested for human toxicity. An informative video on their website details the issue.

In 2006, Bill Moyers aired a PBS special highlighting the deleterious effects of chemicals on human physiology, exposing the nefarious and cynical lack of government and regulatory oversight of the chemical industry in the interest of trade secrets. His investigative journalism uncovered scientific proof that children---especially children still in utero---are exposed to enormous concentrations of neurotoxins during critical periods of neurological development. During the course of his investigation, Mr. Moyers' hair was tested for the presence of various heavy metals and neurotoxins, and the results were staggering, with dozens of toxic chemicals present in his bloodstream. Recent scientific findings have led to ongoing research to discover if the "epidemic" of ADD, ADHD and even Autism may be linked to the explosion of unregulated chemicals saturating our environment since World War II. Moyers points out that political contributions by the chemical industry to both major political parties over the decades have bought a great deal of freedom from oversight for the purveyors of such substances, and the only party injured by that sweetheart deal has been the blissfully ignorant American people.

In terms of attention from healthcare professionals, this writer has been most heartened by an article in the American Journal of Nursing (Cooper, Carolyn. "Multiple Chemical Sensitivity in the Clinical Setting", AJN, March 2007, Volume 107, Number 3, pp. 40-47). The author, Carolyn Cooper, presents a thoughtful and relatively comprehensive article, outlining the potential etiology of MCS, general symptomatology, demographics, as well as the controversy surrounding the struggle for recognition of MCS as a physiological condition. To her credit, Ms. Cooper uses a case study, complete with photographs and a patient's true identity, to illustrate the special considerations and accomodations necessary for a hospitalized patient with MCS. I was both impressed and gratified that Ms. Cooper took her patient's needs at face value, working closely with his wife to manage his care without exacerbating his condition, providing optimal care for a patient at his most vulnerable, and taking the time to educate her colleagues as part of the process. Ms. Cooper then provides a thoughtful and step-by-step list of instructions and recommendations for accomodating patients' dietary and environmental needs while hospitalized. This is truly a must-read for every nurse.

Due to the prevalence of respiratory diseases such as COPD, asthma, and environmental allergies, all healthcare facilities should consider enacting strict fragrance-free policies for both visitors and staff. Individuals with MCS are often socially isolated due to the risk of chemical exposure in both public and private spaces. Sadly, individuals with MCS often feel at great risk when entering a healthcare facility, even for the most basic of preventive healthcare. With potential sensitivities to ammonia, bleach, latex, chemical cleaning products, fragranced soaps and hand sanitizers, colognes worn by staff and other visitors, as well as the ubiquitous second-hand cigarette smoke lingering around the entrances to public buildings, a visit to a healthcare facility can be an exercise in anxiety and damage control for the person with MCS. We all know that a hospital stay for a non-chemically sensitive individual can be stressful and far from restful. With MCS on board, a hospital stay can indeed feel potentially lethal to the patient with MCS.

When considering the controversy over the medical validity of MCS, please recall the uphill battles for recognition waged vis-a-vis Fibromyalgia/Myofascial Pain Syndrome, Restless Legs Syndrome, and Chronic Fatigue Syndrome. Many diseases begin their careers as second-class illnesses discarded on the psychosomatic scrap heap. I would venture a guess that even Borderline Personality Disorder and Post-Traumatic Stress Disorder saw their share of nay-sayers back in the day. While rigorous scientific validation is indeed useful when a new disease is barking at the door of the AMA, it appears that politics, economic interests and entrenched ways of thinking can often stand in the way of progress. The insurance lobby certainly has a vested (financial) interest in keeping MCS out of the ICD-9 code-book, and those chemical companies must be plenty worried as investors withdraw funding from their products due to fear of litigation and reprisal for deleterious health effects. Politics and healthcare make strange bedfellows, but one must not forget that managed care and the insurance lobby also have economic interests at heart, and I would not be surprised if some of those economic interests could be traced to decision makers high within the echelons of the venerable AMA. What a tangled web we weave.

As nurses, beyond the politics, the insurance tangles, and the economic vicissitudes of healthcare, we are faced with patients who entrust us with their lives and well-being. When a patient enters your unit and informs you that he or she has Multiple Chemical Sensitivity, what are you to do? How will you approach other staff members? How will you even begin to accommodate your patient and assuage his or her concerns? With all of the normal stressors of your workload, how will you make the time to accommodate such specific needs? The answer is education and information, and when that patient walks through your door, that education will be a steep learning curve indeed for the ill-prepared. Listening to your patient and taking his or her concerns at face value is a good place to start. The article mentioned above in the American Journal of Nursing is another valuable resource. MCS-America offers resources and links, as does MCS Resources and Referrals. Governmental websites---like OSHA and The Interagency Workgroup on Multiple Chemical Sensitivity---offer some additional guidance.

As professionals who want to provide the best care possible for every patient, it behooves us to prepare in advance for as many eventualities as we can. As latex allergies have come to the fore, awareness has increased as facilities begin to provide staff education (and proper accommodations) for patients and staff with such sensitivities.

If your facility has indeed addressed latex allergies (which this writer hopes they have), perhaps the administration will be open to discussions regarding MCS if the request is framed in light of the exponential explosion of latex sensitivity (and perhaps peanut allergies) across the population. Making a link between latex allergies (which worsen with continued exposure) and MCS (which also worsens with each exposure) will help administrators and managers understand and integrate the importance of the issue. As peanut and latex allergies have gained acceptance, recognition, and action throughout the country, those suffering such sensitivities have felt increasingly emboldened to demand accommodation and safety. It cannot be denied that unregulated and dangerous chemicals permeate our environment, homes, schools, and hospitals. Shouldn't those sensitive to, and made ill by, such products also be given our attention and support?

Nurses are not just caregivers. We are advocates. We do not just treat patient's symptoms. Nurses look at the whole person, sometimes called a "biopsychosocial" approach to care. Apropos of this fact, this writer contends that nurses must take up the cause of vulnerable populations within the healthcare setting. When we think of vulnerable populations, what generally comes to mind are the homeless, the uninsured, the underinsured, children, the elderly. Moving beyond that more narrow definition of vulnerability, we must also embrace the "silently vulnerable", those whose disability is less apparent, and perhaps, as is the case with MCS, resolutely rejected by the medical establishment.

Chemicals and chemical sensitivity are not going away, no matter how the AMA, the insurance industry, and the chemical industry hope that they will simply fade into the background. The MCS community is lobbying hard to win recognition and validity. This writer calls on nurses everywhere to take up the gauntlet of MCS and bring it to the attention of your coworkers and administrators. Our voice can be heard loud and clear. Let's be the megaphone for a condition whose time has come.
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