President, Ohio Network for the Chemically Injured (ONFCI)
Those with MCS expect their physicians to understand their severe reactions to chemicals and to accommodate their needs. However, most physicians are not trained to identify the symptoms and illnesses caused by environmental factors. Medical school curriculum typically approaches solving health problems by one of two means: medication or surgery. Prevention, nutrition and environmental factors are not usually addressed by physicians. These considerations are critical when treating a patient with MCS.
The majority of those with MCS report that most physicians, due to a lack of medical school training, are not attentive to their requests for accommodations and deny symptom causation from environmental factors. This typically leaves MCS patients with two choices - to suffer the severe effects of environmental exposures in a physician’s office or to go without medical care entirely because they do not want to suffer further health deterioration, pain and sometimes life-threatening symptoms.
Federal law provides that those with disabilities must be accommodated under the Americans with Disabilities Act (ADA). Many physicians do not understand how the ADA defines disability. Under the ADA, a disability is defined as an impairment of the body or mind that interferes with life activities. Most people with MCS experience problems breathing, thinking, walking, working, etc. These impairments substantially limit their life activities and are therefore covered under ADA law. Although our right to protection under this law has been challenged by those who will intimate that science and the medical profession have not yet validated us, their challenge does not obliterate ADA law and the responsibility to accommodate those with disabilities.
Patients with the disability of MCS have the right to request a fragrance free treatment environment, a safe path of travel and other reasonable accommodations in a physician’s office. Physicians may not refuse to treat an MCS patient solely on the basis of their disability or refuse to provide reasonable accommodations. However, it is up to us to educate our physicians about our MCS accommodation needs. You are welcome to copy our suggested guide for your personal use and present it to your physician, modifying it to include any special needs or allergies you may have. Please remember that all requests for accommodation, according to the law, must be reasonable. Your physician may contact us for further information.
MCS POLICY FOR MEDICAL OFFICES
Reasonable, Achievable and Immediate MCS Accommodation Solutions:
Avoid preventable exposures. Ask your patient to create a personal list of necessary precautions and known, documented environmental triggers (i.e., latex, alcohol, carpeting, triplicate part paper, deodorizers, air fresheners, etc.). Remove these items from your patients’ environment. Retain list permanently. When referring your patient, furnish this list to other physicians, hospitals, laboratories and testing facilities and home health care providers.
An MCS patient’s medical chart should be flagged for allergic reaction triggers and reviewed by office staff the day prior to each visit to prevent any unnecessary exposures. Encourage your MCS patient to phone the day ahead and remind office staff about the MCS precautions.
Schedule MCS patient as the first appointment of the day to avoid exposure to the chemical residues of other patients.
Permit MCS patient to use staff entrance to avoid waiting room contaminants (other people using fragranced products, magazines, newspapers, carpeting, etc.).
Adopt fragrance –free office policy and post signage to that effect for other patients and visitors.
Use fragrance-free detergents and products to launder medical staff uniforms and clothing.
Store uniforms and lab coats in a non-toxic area as they may absorb cleaning chemicals and disinfectant odors. Sterile O.R. gowns and surgical caps should be kept on hand for staff use to provide additional protection when necessary.
Many aerosol and aluminum based deodorants cause severe hypersensitivity reactions in those with MCS and should be avoided. Substitute baking soda, non-perfumed pump spray deodorants or potassium salts (available at most health food stores) on days when an MCS patient is scheduled (or avoid use of deodorant until after the appointment).
Post warning signs at all entrances whenever any remodeling, painting, pesticide spraying, roof repairs, etc. are being conducted anywhere in or about the building. Whenever possible, contact MCS patients for rescheduling of appointments when you have advance notice of these activities taking place.
Refrain from using fax machines, copy machines or other odorous equipment during the MCS patient’s visit (or place the MCS patient in an examination room far removed from these activities).
Store all triplicate part paper and any other odorous papers in a metal file cabinet to minimize chemical emissions into the air. Newspapers and magazines are also problematic and should not be placed in the exam room of MCS patients. Do not ask the MCS patient to sign any triplicate part paper. Aired out copies of forms are usually tolerated.
Provide sterile linens or have patient bring own linens to avoid formaldehyde, disinfectant and perfume exposures.
When an unavoidable exposure occurs remove offending agent, person or allergen as soon as possible or remove patient to outdoor air or another environment. MCS patients typically know what trigger is causing their reactions. Please listen to what your patient is saying.
Provide understanding, empathy and support to the patient at all times, especially during an unavoidable reaction. An MCS patient is not capable of dismissing reactions by “not thinking about them” or “remaining calm” and requests to do so create unnecessary stress that typically worsens the reactions.
Avoid carpeting. In addition to the toxic materials and glues the carpet and its padding may contain, body fluids cannot be properly removed from carpeting and carpets retain perfumes, fabric softeners, mold, etc. Utilize least toxic floor coverings including ceramic tile, natural wood overlays, bamboo and other safer selections.
Avoid toxic building materials and wallpapers including those containing formaldehyde, treated wood, toxic glues and adhesive materials. This also protects your staff.
Utilize metal blinds instead of fabric drapes, thereby eliminating dry cleaning odors, rubber insulation, mold, absorption of other odors, etc.
A word about insurance coverage: Read your policy and talk to your agent. Environmental contamination (even mold is currently being phased out) is typically excluded from most insurance policies. An ounce of prevention is in order.
Patients with the disability of MCS have the right to be provided with a safe hospital environment. Please encourage your hospital to adopt MCS policies and procedures. ONFCI can provide sample formats and assistance.
Reasonable and Achievable Solutions
Request hospital to place your patient in a private room as exposures to other patients and their visitors (fragrances, personal care products, newspapers, pesticide treated plants and flowers, etc.) may cause severe reactions or be life threatening.
Write specific physician orders to prevent unnecessary exposures and safeguard the health of MCS patients for:
1. Dietary needs and restrictions to avoid preservatives, dyes, MSG, sulfites, etc. in food. Consult with your patient for other special needs and allergies (i.e. peanut, dairy).
2. Prescription drugs to avoid dyes, preservatives, etc.
3. Medical supplies to avoid latex and other fabrics provide glass i.v. bottles, special paper tapes and other necessary supplies as mandated by patient needs
4. Nursing requirements and MCS precautions
5. MCS room environment precautions
6. Operating Room procedures for MCS patients
7. MCS Door signage
8. Orders to coordinate MCS accommodations by all other hospital staff including x-ray, i.v. team, blood lab, etc.
When referring an MCS patient, educate any colleagues or specialists not familiar with MCS (in advance) about MCS patient precautions. Education should be mandatory to maintain accreditation and prevent liability as hospital insurers do not cover pollution problems.
Follow any applicable MCS precautions outlined above under Medical Office Procedures
Note: Many have successfully obtained safer accommodations by using these guidelines but, if you don’t ask for an accommodation, it won’t be provided.
Hints on “asking”
Always ask for MCS accommodation in writing. Keep a record of all conversations, dates, comments, the accommodations you requested and any other pertinent information. This “diary” will be necessary to document non-compliance with the law if the physician does not accommodate your requests.
Do not be intimidated by the medical profession. You have a right to have your individual needs met.
Ask in a way that does not put the medical professional on the “defensive”.
Do not ask for anything unreasonable (test your judgment by asking family and friends before relating your requests to a medical professional
Offer to educate your physician
Talk to others who have been successful
If the Physician Refuses to Accommodate your Disability
Write one complaint letter, outlining the details and send it to the following:
File a complaint with the Department of Justice under the ADA, Title III
Report the physician to the state Medical Board
Report the physician to the Civil Rights organization in your state
Contact disability groups in your community and ask for their advocacy coordinator. Independent Living Centers who belong to the National Council on Independent Living have already been educated about MCS
If you have Medicare Insurance, report the physician to Medicare and Social Security
Your state’s Governor’s Council on People with Disabilities has an advocacy committee that you can voice your complaints to and they (and other disability organizations) can also provide you with the names of other agencies in your state that will take your complaint or attempt to assist you
Report the abuse to your federal congressmen and senators and ask them to make an “inquiry” into the matte (if the discrimination occurred in a federally funded hospital.
Write to the American Medical Association (Ethics Committee) Share the name of the physician and how they have discriminated against you
Send ONFCI a copy of your complaint against your physician as we are documenting the abuse and discrimination against those with MCS as well as attempting to educate theAMA Ethics Committee. We have challenged AMA Prinicipal VI, as it reads, as being discriminatory and have asked them to clarify it.
Send a letter to the editor of your city’s newspaper, or contact television and radio station talk shows in your community
For right now, if you don’t act to further protect your health, no one else probably will.
For Further Information and to send a copy of your complaint against a physician,, please contact the Ohio Network for the Chemically Injured at (440) 845-1888 or P.O. Box 29290 Parma, Ohio 44129