Why do employees with MCS struggle for accommodation and benefits?

I recently testified as an expert witness on behalf of a patient with multiple chemical sensitivity (MCS) who was being denied accommodation in the workplace.  The lawyer for the insurance company began the proceedings by trying to discredit me as an expert but my CV convinced the Judge to accept my testimony. These companies employ lawyers and physicians who support the insurance company’s stance and continue to discredit doctors who treat patients with environmentally related conditions. So it’s no wonder that these patients still struggle to obtain benefits and accommodation. 

We buy disability insurance to cover loss of income if we are unable to work due to an accident or illness.  Often, the illness is clear cut and can’t be refuted.  There are ECGs, x-rays, and blood tests that verify the presence of disease. But in the case of an illness where there are no biological markers, where the symptoms are invisible, there is often an uphill battle to collect benefits.  What if your own doctor doesn’t believe you?

Even if the family doctor is supportive, patients with environmentally related conditions frequently find themselves in conflict with their insurance carrier.  For example, despite the published evidence in the medical literature, Workers Safety Insurance Boards still deny the existence of MCS and refuse compensation and/or retraining of workers who develop the disorder from chemical exposures in the workplace. 

 Accommodating the disabled

Employers are often requested by the treating physician to provide accommodation to their employees with MCS. To help protect them, the Canadian Human Rights Commission (CHRC) has recognized MCS as a disability with the legal right to accommodation since 2007. Typically, this could be initiating a scent-free policy, and/or creating a space to avoid the chemical exposures that are making the person ill.  These chemicals are normally found in the non-industrial indoor work environment. Common sources are scented products worn by others, deodorizers, cleaning products, and chemicals off-gassing from carpets and building materials. Unfortunately, employers and fellow employees frequently do not comply with these requests. They feel that their right to use or wear scented products is being infringed upon, even though that right does not exist in law.

Scent free policies in the workplace are recommended by the CHRC, the Canadian Centre for Occupational Health and Safety, the Canadian Committee on Indoor Air Quality and Buildings, the Lung Association[5] and the US Centers for Disease Control and Prevention.

Another recommended accommodation for those who cannot remain in the workplace is telework from home. Although employers and supervisors have the legal duty to accommodate, they frequently refuse to do so, forcing the person with MCS to claim disability.  The claim form is filled out by the employee and must be supported by their doctor.

And then what?

The insurance provider wants to see their client return to work because not doing so costs them money. In order to encourage this outcome, they obtain a second, independent medical opinion, from someone of their own choosing. This almost always results in a denial of the existence of MCS as a biological entity and the recommendation that the patient must return to work.  Whether or not they are told to return to work immediately or put on a return to work program is dangerous practice because they are insisting that the chemically sensitive patients increase their exposures to the things that make them sick.

Dangerous practices

They refer to this return to work program as a progressive, desensitization treatment, meaning that the patient must learn that exposures to different scents and chemicals are not dangerous. They frequently also recommend the use of antidepressants and claim that that this is an effective treatment. The condition is “in their heads.”

Here’s what happens

If the patient refuses to cooperate, they are cut off from their benefits. If they follow the advice and increase the chemical exposures, they get more sensitive, meaning that their symptoms are more severe and last longer, and the patient becomes sensitized to more chemical pollutants. They are also more likely to develop other conditions frequently seen in these patients, such as chronic fatigue syndrome and fibromyalgia. I have seen this happen too many times!

What’s wrong with this picture?

There are more than 800,000 people in Canada with a reported diagnosis of MCS. The prevalence is reported even higher in the USA. There are millions of people in North America with this disorder. However, there are just seven individual cases reported in the medical literature that claim to have successful outcomes with progressive, desensitization treatment. They were not well designed studies. The last case report is 12 years old. “Experts” who recommend this medical treatment rely on an outdated and low level of scientific evidence.

Responsibility for treatment decisions belongs to both doctor and patient. The paternalistic doctor-patient relationship of previous generations is no longer acceptable. Doctors must share their information and knowledge to allow the patient to make the best choices regarding their own treatment. This is known as informed consent, and has become the primary paradigm for protecting the legal rights of patients and guiding the ethical practice of medicine.

Doctors are supposed to practice evidence-based medicine. When the evidence is low, they take on a greater burden of responsibility for the outcome, especially if there is risk for harm. For example, doctors who practice complementary and alternative medicine are obligated to inform their patients why the evidence supporting a particular treatment is low, and must obtain a signed consent form that they have been so informed.  Not doing so could result in being charged with failure to meet the expectations and standards of the profession.

The insurance companies have the right to obtain a second opinion, and are not financially responsible for clients who refuse therapy. Even though our laws clearly state that consent must be voluntary and the patient must be properly informed, they do not properly inform the patients of potential risk, and coerce them into consenting to treatment by threatening them with loss of income. If the patient cooperates with the insurance company and becomes more ill, they may be unable to work at all. Either way, they face an expensive, time consuming, legal battle, because they have chosen to not begin or continue the treatment as recommended by the insurance company’s medical advisors.

What needs to happen?

The evidence-based concepts of environmental medicine should be integrated into the medical education system. Currently, most family doctors do not advocate well enough for these patients.  More importantly, employers, claims adjudicators, and their so-called experts should be held accountable for the harm they cause MCS patients by denying their legal right to accommodation, for insisting that they partake in treatments that make them worse, and for not properly and ethically obtaining informed consent.  

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