May 6, 2014

How to Create Inclusive Communities for people affected by MCS

Prepared for the Creating Inclusive Communities public consultation forum held in Regina at the Queensbury Convention Centre, Salon 3, May 6, 1:30 – 4:30 pm and sent in as a written contribution.

By Paule Hjertaas, President and spokesperson of the Saskatchewan Network for Alternatives to Pesticides (SNAP)

I would like to thank you for the opportunity to bring the MCS perspective to this forum on disabilities.

Awareness and recognition of chronic health conditions evolves over time, and on several levels. International, national, provincial and municipal governments have recognized conditions related to environmental sensitivities. This has led to funding for clinical health care programs and facilities in other provinces. Public and political awareness are particularly important for conditions such as environmental sensitivities, because recognition of environmental causes has diverse implications for many interests in society.

The United States Environmental Protection Agency has rated poor Indoor Air Quality (IAQ) as being among the top environmental risks to human health.(18) The medical community is increasingly acknowledging environmental sensitivities in medical education. Scent-free and least-toxic cleaning policies, as well as advocacy for smoking, vehicle idling and pesticides policies and laws are increasing (1 p 15), although there is little existing Canadian legislation that explicitly addresses the control of indoor pollution. (18) For instance, the chemical concentrations that trigger symptoms in MCSers appear to be orders of magnitude below OSHA and Occupational Health and Safety standards (usually hundreds or thousand times below). Unless OSHA limits are exceeded, which will rarely be the case, such standards have no relevance for MCSers, and should not be invoked nor used as a benchmark for safety (19 p.27.20). Material Safety Data Sheet (MSDS) sheets are incomplete and only list proven harmful chemicals. (Appendix B)

It is also important to note that many products (e.g. fragrances, air fresheners, body care products, fire retardants, pesticides and many others) which trigger symptoms in MCSers have recently been found to contain chemicals which are cancer-causing, endocrine-disrupting and/or neurotoxic. (17) They are therefore not good for anyone. There is also now universal consensus that endocrine disruption effects are caused by chemicals at concentrations normally found in the environment. (16)

In addition, many toxic products have been linked to several types of disabilities. (Appendix A,C)

Although Multiple Chemical Sensitivities (MCS) is now recognized as a disability at many levels of government, there is very little in the current SK government disability strategy that recognizes or supports those disabled by MCS. MCS patients are still disbelieved and ignored. The results of lack of recognition of medical and social needs include poor health outcomes and higher health care costs, both for the patient and for the health care system.(5 p 30)

To appropriately deal with MCS, it is essential to understand that, without safe food, water, shelter and workplaces, people with environmental sensitivities may become severely debilitated and

unemployed.12,60,78

(1 p. 27)

1. What is MCS1

Multiple chemical sensitivity (MCS) is a chronic medical condition characterized by symptoms triggered by low-level chemical exposure. Commonly involved chemicals include smoke, pesticides, plastics, synthetic fabrics, scented products, petroleum products, and paint fumes.

In my case, symptoms have included stuffiness and sore throat, headaches, anaphylaxis-like reactions, heart arrythmias, severe arthritis, chronic fatigue, fibromyalgia, gastro-intestinal problems, sensorial paralysis and neuropathy, severe sudden weight loss, and dislexia and ‘brain fog’ after driving by sprayed lawns, even in a closed car. One of my MCS friends could not find her way home when exposed to fragrances.

The Canadian Human Rights Commission (CHRC) Report entitled 'The Medical Perspective on Environmental Sensitivities , ' (1) is a fundamental scientific and well-researched reference to understand the medical issue and the problems MCSers suffer in integrating in society. It is my main reference. The other is the Environmental Sensitivities-Multiple   Chemical Sensitivities Status Report by MCS MDs at the Women’s hospital in Toronto.(5) 

Diagnosis consensus regarding criteria to establish an MCS diagnosis (1 p 4): • symptoms are reproducible with repeated exposure; • the condition is chronic; • low levels of exposure [lower than previously or commonly tolerated] result in manifestations of the

syndrome; • symptoms improve or resolve when the incitants are removed; • responses occur to multiple chemically unrelated substances; and • symptoms involve multiple organ systems.4

• neurological symptoms could be an additional criterion2 as suggested by a systematic literature review.

The consensus diagnostic criteria have been validated by several studies.

MCS is a controversial illness because it is a political illness. The health and ability to work for those with environmental sensitivities rests with the choices and actions of others, such as building managers, co-workers and clients.(1 p 20) It puts in question the toxic products produced by multinational companies and in common use in our society. Most of the controversies have been generated by multinationals that see their bottom line threatened.(6) The tactics are the same documented for the tobacco industry, gmos, drugs(7), pesticides(9) and many other environmental contaminants (8,10). These controversies are evaluated(1p21) with the conclusion that:

“The balance of scientific evidence and experience indicates that environmental sensitivities generally arise from physiological causes, although there are many neurological and psychological consequences. The most practical approach, which is consistent with the practice of modern medicine, is to minimize potentially harmful exposures in the workplace for the health of all workers. Once a person has exhibited sensitivities they will always be susceptible to recurrence. Even though they may well regain their health and productivity, this predisposition to environmental sensitivities is life-long.” (1, p 26)

2. MCS is considered a disability by the Canadian Human Rights Commission (1,2) and recognized by the SK Workers’ Compensation Board

Many MCSers are currently considered disabled in Saskatchewan. A table of which national governments and which Canadian government departments recognize the validity of MCS up to the publication date in 2007 are listed in reference 1.

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The SK Workers’ Compensation Board website currently recognizes the following related conditions: MCS, Sick Building Syndrome, chronic pain, fibromyalgia, ‘allergy” to formaldehyde or VOCs, and toxic neuropathy. (1 p. 12) Saskatchewan Health recognizes that health is linked to the environment, with numerous public education activities. With a large farming population using pesticides, it also promotes screening for cholinesterase activity (www.labour.gov.sk.ca/safety/bulletins/organo.htm).(1 p.11) However, while a lot of great multidisciplinary pesticide research was conducted the 1990s by the Canadian Centre for Health and Safety in Agriculture (U of S), further inquiries indicated that, by the mid-2000s, farmer surveys did not even include a single question on pesticide use on the farm and the staff was mostly disbanded.

3. How many Canadians are affected (the reference #s are those of the original publication (1))

- 5% of Canadians (1.2 million people) suffer “medically unexplained physical symptoms,” including

multiple chemical sensitivity, fibromyalgia and chronic pain.9 (Statistics Canada January 2007)

- 2.4% in people aged twelve or older,9 and 2.9% in people thirty years of age or older doctor-

diagnosed multiple chemical (Statistics Canada’s 2003 National Population Health Survey)10

- 3.6% of all Canadian nurses experienced chemical sensitivities.11 (2005 National Survey of the Work and Health of Nurses)

- 3.1-6.3% prevalence in the general American population - 11%-33% of the American populations self-reports of heightened sensitivity (feeling ill) on exposure to

“everyday” chemicals. 13,14, 15

- It is unclear to what extent people experiencing less severe intolerances are at an increased risk of developing full-blown, debilitating environmental sensitivities. However, recent studies have revealed

genetic links to sensitivities,16-22 and biochemical differences between people with sensitivities and

“control” populations.23 Clinical experience shows that increasing chemical exposures are associated

with increasing symptoms and reports of sensitivity spreading to more incitants.3,24

- More women than men are affected by environmental sensitivities. - Environmental sensitivities affect all socio-economic classes. The recent Canadian analysis indicates

that people from a lower socio-economic class are more likely to report medically unexplained

symptoms than are people from the highest socio-economic class.9 On the other hand, clinic-based and citizens’ groups surveys indicate that more highly educated or affluent people with sensitivities

tend to seek medical care or self-help.5,27,28

- Sensitivities may occur in anyone, even at an early age.31,32 Children’s respiratory, learning and behavioural difficulties may be associated with toxins passed on from the mother, as well as a variety

of factors including pesticide exposure, indoor air quality and foods.13,33-39

- Studies have revealed that the prevalence of environmental sensitivities increases with age. For example, the prevalence of medically unexplained physical symptoms (chronic fatigue, fibromyalgia and multiple chemical sensitivity) in Canadians increases with age from 1.6% of people aged 12 to 24

years, to 6.9% in people 45 to 64 years old.9 In a Statistics Canada survey of Canadian nurses, 1.4% of nurses younger than 35 years reported chemical sensitivities, which increased to 3.7% in nurses

35-44 years old, and 4.3% and 4.8% in successive decades.11 Similarly, in studies in Arizona, 15% of

college students and 37% of elderly participants reported heightened sensitivities to chemicals.30,40

Increasing prevalence of sensitivities with age is relevant for the aging workforce, as well as for care of the elderly.

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Unlike perfumes and moulds, electromagnetic fields are usually not perceived. Similarly,

electromagnetic sensitivities, while plausible,41 are poorly recognized. The prevalence of

electromagnetic sensitivities is estimated to be 1-3% of the population in various countries.42 (1, p. 4-

5) I am not an expert on this issue but the syndrome must be affecting more people as I hear evidence of people being affected by cell phones, wifi and smart meters.

In conclusion, the evidence is that up to a third of the population may be experiencing discomfort. Environmental sensitivities affect approximately twice as many women as men, and increase with age. Sensitivities may be associated with higher-risk occupations and they disproportionately affect the poor, while the wealthy are more likely to be treated. ( 1 p 6)

In Saskatchewan, it means that, should we have MCS diagnosis and medical care available, 24- 29,000 people would be diagnosed with MCS, many of whom would be disabled. Those currently diagnosed are more likely to be disabled because they had to be really really sick in order to get a diagnosis. Most have been sent out of province to get an MCS diagnosis since Dr Gerrard retired.

4. MCS makes it difficult to integrate in the community as long as obstacles persist.

Obstacles to MCS integration in society

Sensitivities may be initiated by a range of environmental factors and once the condition is initiated, reactions may be triggered by a broadening array of incitants (or triggers). Environmental sensitivities may affect every system in the body, so multiple symptoms are possible, with variation among individuals. Neurological symptoms are almost universal.(1 p20)

The triggers involved, the types of symptoms and their severity may vary in type and intensity from one person to another. The following 2 tables describe the most common triggers and symptoms (1 p

17-18), Appendix A is another way to present health consequences.

Table 6: Typical agents that trigger reactions in susceptible individuals (and may contribute to initiation of environmental

sensitivities)3,28,60,70,71Type of incitant

Examples of incitants Examples of sources/products

Volatile organic compounds FormaldehydeSolventsScentsOff-gassing mixturesPetrochemicals

Urea formaldehyde foam insulation*Wood glues (e.g. plywood and chipboard)**PaintsVarnishesPaint thinner and stripperGluesAir freshenersPerfumes, personal care productsHousehold cleaning agents – e.g. detergentsFabric softeners

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Equipment (e.g. computers)FurnitureCarpetsInks in books, periodicalsFuel, oil

Combustion products Tobacco smokeVehicle exhaustBarbecue or wood smoke

SmokersBuses, trucks, carsBarbecues, wood stoves

Microbial products MouldsBacteriaMycotoxinsMould or bacterial metabolites

Mould or bacteria in structuresMould or bacteria in air conditioning/air handling systemsMicrobes in older documentsMusty furnishingsSoil (plants)

Pesticides InsecticidesHerbicidesFungicidesAlgaecides

Products used to kill insectsProducts used to kill weeds outsideProducts used to kill fungiSwimming pool chemicals, including chlorine

Natural inhalants PollensAnimal dander

Tree pollens (spring)Ragweed (August/September)Dogs, cats, horses etc.

Foods Allergenic proteinsPreservativesFlavouringIndividual-specific (e.g. pungent foods)

Peanuts, milk, gluten in grainsSulphites in dried fruits and wineMonosodium glutamate (MSG)Curry, cinnamon

Electromagnetic radiation LightRadiowaves and MicrowavesVery low frequencyelectromagnetic fieldsGround currents

LightingVideo display screensFluorescent light bulbs, “dirty electricity,” wiring problems, energy-efficient devices, computers, televisions, telecommunications equipmentPower linesPower supply services that allow current to flow through the ground, pipes or structures

Other factors TemperatureNoise

Workplace infrastructure

** formaldehyde-containing glues are banned in new products in many countries including Europe, Japan and China

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Table 7: Environmental sensitivity

symptoms/reactions5,60,75,76 Body system

Symptoms

Nervous system Heightened sense of smellDifficulty concentratingDifficulty remembering

Apparent variability in mental processesFeeling dull or groggy

Feeling “spacey”Headaches

Restlessness, hyperactivity, agitation, insomniaDepression

Lack of coordination or balanceAnxietySeizuresTinnitus

Upper respiratory system Stuffy nose, itchy nose (the “allergic salute”)Blocked ears

Sinus stuffiness, pain, infectionsLower respiratory system Cough

Wheezing, shortness of breath, heavy chestAsthma

Frequent bronchitis or pneumoniaEyes Red, watery eyes

Dark circles under eyesPain in eyes

Blurred, disturbed visionGastrointestinal system Heartburn

NauseaBloating

ConstipationDiarrhea

Abdominal painEndocrine system Fatigue, lethargy

Blood sugar fluctuationsMusculoskeletal system Joint and muscle pain in the extremities and/or back

Muscle twitching or spasmsMuscle weakness

Cardiovascular system Rapid or irregular heartbeatCold extremities

High or low blood pressureSkin (dermatological system) Flushing (whole body, or isolated, such as ears,

nose or cheeks)Hives

EczemaOther rashes

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ItchingGenitourinary system Frequency and urgency to urinate

Painful bladder spasms

The actions needed to handle triggers are mostly discussed in section 5.

For example, use of toxic and usually scented and anti-bacterial hand soaps in public bathrooms, hospitals and other public buildings could be easily addressed by switching to a more acceptable and environmentally safe product.

Latex allergies will be discussed under hospitals, although it applies in other fields where natural rubber is used. It is fundamental that it be addressed for the population severely allergic to latex, many of them with anaphylactic, life-threatening reactions.

Other triggers not mentioned above are Gas Appliances and GMOs (genetically modified organisms).

Current Occupational Health and Safety standards will be discussed under Education, below.

However, one Particular change that is imperatively needed is to get rid of the attitude “but it doesn’t bother me” with the implication of: “why should I bother changing?”

5. How could this Disability Strategy be Amended to Include MCSers in Services

Ministry of Social Services Saskatchewan Assured Income for Disability (SAID) ProgramI cannot personally speak to this as we own our house. However, appropriate ‘environmentally safe housing’ has been identified as a fundamental problem keeping MCSers in illness and poverty everywhere. Environmentally ‘safe’ housing is difficult to come by everywhere. Over the years, many people with MCS contacted me, and many who were previously gainfully employed and made sick on the job were refused disability because it is so difficult to obtain a diagnosis in SK. They were forced to sell their house in order to qualify for social services or any help at all. However, the stipends offered could not cover organic food and the supplements needed to retrieve their health and would force them into rental housing which can only worsen symptoms because of regular insecticide and herbicide treatments, commonly shared washing machines where other renters use strongly scented products, and usually poorly designed ventilation systems which bring odours from other apartments into one’s own.

It is important that people disabled by MCS be able to obtain a diagnosis, and the diagnosis of disability if they need it so they are not forced into poverty and more ill health.

Appendix 2 gives extensive information on building for MCS. I will send additional information as it becomes available.

Disability Rental Housing Supplement • $6.1 million has been allocated to the Disability Rental Housing Supplement since 2007 to help low-income families where at least one

member has a disability gain access to quality and affordable rental housing.

While money has been allocated for Disability Rental Housing Supplement, I doubt a penny of this involved ‘environmentally safe’ rental house.

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Another issue with rental housing in SK are the commonly used insecticide treatments for cockroaches, bed bugs or other pests. These treatments are unnecessary as more modern pest control uses pheromones, traps and bait stations and are a lot more successful faster in getting rid of pests but still commonly used by SK pest control companies. (4,11)

Safe housing, school, workplace, and food and water are top priorities for MCSers. A Safe Housing strategy and policy with lists of acceptable products and alternatives to current practices has to be developed and enforced.

Approved Private Service Homes (APSH) • $3.97 million in increases for approved private service homes that provide residential services, including $3.33 million for a general

Level of Care (LOC) increase for CBOs providing services to people with disabilities within the Approved Private Service Home Sector.

It has been suggested that perhaps private service homes could be licensed for chemically sensitive people. This may be a possibility, but the individual nature of triggers and reactions could make it impossible for people to live in the same space. For instance, the smell of the coffee one person makes may make the other person very sick. Similarly, a lot of cooking herbs and spices are very strongly scented and a large proportion of chemically sensitive people have reactions triggered by foods as well. For example, I spent 2 months in a MCS apartment in Florida and all 3 of us living there were incompatible to what the other had to use to wash clothes. One was even anaphylactic to vinegar and baking soda. People would have to be well matched as to sensitivities and tolerances to be able to live together in an MCS safe house.

Some thought has to be given to developing ‘environmentally safe’ housing for SK. Ottawa has some, and a project is being built near Montreal, in Quebec.

The issue of the total lack of recognitions and support for MCSers is important. This lack of support persist as they age. Old folks homes with their toxic cleaning product, floor waxes, pesticide applications, and very scented other residents are not a ‘safe’ or ‘acceptable’ option for MCSers. I received many calls from residents of old folks homes over the years, and what comes out is that most are afraid to talk to administration and request what they need. MCSers have nowhere to go where we can maintain health as we age.

Examples: I had an elderly friend in Regina who spent quite a bit of time trying to convince a green builder to build with MCS safe materials to no avail. She stayed in her home, where she died of a heart attack while gardening. Another elderly friend in North Battleford area is still alone on the farm because she cannot find a ‘safe’ housing option. Getting unscented home care workers is difficult, and getting help is expensive.

CBO Staff Retention and Recruitment • $14.24 million in increases to Community Based Organizations (CBOs) providing supports for people with disabilities.

None of this money is available to MCSers. Most of us are having enough health and life challenges and challenges in finding acceptable housing, products, meeting places, employment etc. that it leaves little energy to organize and fight for better conditions. This is worsened by the lack of knowledge and acceptance of family, friends, co-workers, medical doctors, and support system. Several years ago, I tried to get several CBOs to get interested in MCS or certain parts of the solutions like pesticide reduction, to no avail.

MCSers need competent help to organize and be a voice in SK.

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Ministries of Economy/Advanced Education, Employment and Labour • $358,000 increase to the Workforce Development program to provide individualized employment support for people with disabilities.

The impact of environmental sensitivities on workers’ performance may range from mild (e.g. habituation to chronic exposures such that performance may be sub-optimal, although not “abnormal”) to severe impairment such that work is impossible. The health and ability to work for those with environmental sensitivities rests with the choices and actions of others, such as building managers, co-workers and clients. (1 p 20)

Individualized employment accommodation for MCSers is fundamentally to optimize indoor air quality by minimizing the pollutants added to indoor air from the building and its contents, and/or provide ‘safe’ air filtration. Several authorities, including the Canada Mortgage and Housing Corporation (www.cmhc.ca), the National Research Council of Canada (www.irc.nrc-cnrc.gc.ca) and

the American Society for Heating, Refrigeration and Air-Conditioning Engineers (ASHRAE)181

formally recognize this imperative. (1,P 24) This includes paying close attentions to building and renovating products, furnishings and equipment, microbe contamination, air ventilation and filtration and electromagnetic radiation and fields.

It also includes developing and enforcing meaningful smoke-free, scent-free policies including banning scented detergents, body care products, air fresheners, etc., and moving to modern pest control based on less toxic approaches.

One of the most effective and economical strategies for achieving healthy indoor spaces and good air quality is to minimize potential pollutants during construction and renovation. This includes the use of low-maintenance surfaces that do not off-gas (no carpets or floors that require regular waxing), design and construction that minimizes dampness and moulds, and an air intake system that avoids ground-level air. Energy conservation concerns create pressure to decrease ventilation in sealed buildings, reinforcing the need to use materials, finishings and furnishings with low toxic and volatile inputs and emissions. Least-toxic construction, maintenance and pest control, and infrastructure that minimizes exposure to electromagnetic phenomena all require attention to detail and might entail minimal additional costs. Minimizing on-going sources of environmental factors that initiate and trigger environmental sensitivities such as perfumes, dusts and vehicle exhaust require education and policies, and appropriate maintenance practices. (1p 42)

A particular example of a long-term toxic product used in building is the only glue that SaskPower allows on pipes when moving to a gas efficient furnace. That glue is very toxic and outgasses for years. Another is acoustical sealant used in construction which exudes cancer-causing toxic Trimethylbenzene for the life of the product.

Better indoor air quality benefits everyone and prevents the development of illness. The Saskatchewan government needs to develop lists, approaches and a policy to increase education on the importance of indoor air quality and safer choices, and support workplaces in making needed changes.

Ministry of Education • $14 million increase to the Supports for Learning component of the Education Funding Distribution Model (prior to 2011-12 this was the special needs/intensive supports factor of the school Foundation Operating grant) to provide individual programming, supports and services for students with learning difficulties/disabilities. • $1.55 million to support the inclusion of children with disabilities in child care facilities. • $1.06 million increase to Enhanced Accessibility grants to improve access to licensed child care.

Children may also be MCSers. A lot of children have asthma and respiratory problems or skin problems. For instance, my daughter had very sensitive skin. When she was babysat at church and

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would come home smelling of strong perfume, she would have a big rash over all exposed skin. Scented markers, stickers, scented hand-washing pump soaps and other materials may trigger asthma or eczema attacks.

I have been contacted by parents of MCS children who could not attend school because it was too polluted. Many years ago, several teachers and students became sick at Campbell Collegiate. One individual case went to court. I attended. I was upset that the jury was not present when the defense lawyer unsuccessfully tried to get Dr Gerrard disqualified as a witness. Through lack of knowledge, the judge then ordered Dr Gerrard not to mention the term ‘sick building syndrome’ in his testimony. In spite of solid evidence, the case was lost because of a lack of understanding that a mixture of chemicals at very low levels (ppb) level can produce symptoms worse than the environmental standard for one chemical at the ppm level. Occupational Health and Safety testified that they found no problem. This occurred simply because their equipment could not measure anything below ppm, which is the outdated standard they have to enforce.(19 p.27.20) One of the pieces of evidence presented included a badly maintained ventilation system with a lot of contamination.

Currently, Regina school boards have divested themselves of the issue of pesticide use on school property. Although in Regina, we are told that less herbicides are used and no insecticides, talking to the caretakers reveals they are still using several insecticides as needed, likely with no notification when used. The U.S. EPA has great documents and information online as to alternatives for the most used pesticides.(4)

In conclusion, every school board, school division, as well as school maintenance personnel, are left to themselves to make decisions on their properties. These decisions will only be informed to the level that individuals making them are informed. What is lacking are provincial guidelines to make decision-makers aware of safer alternatives and products, inspections to ensure that buildings are maintained properly, and a provincial policy of promoting good maintenance practices and safer alternative products. This alone would make a lot of difference for MCSers and likely prevent the development of more disabilities due to air pollution.

Ministry of Health • $7.5 million investment for autism programs and services.

• $11.1 million to the Saskatchewan Aids to Independent Living program to maintain benefits for people with long-term disabilities (orthotics, prosthetics, rehabilitation/mobility equipment, oxygen, and insulin pumps for children).

Many people disabled with MCS require oxygen so in that way they would qualify for the measures in place.

The biggest help for people with MCS would be that a list of MCS ‘safer” products be adopted by government and promoted to all ministries, agencies, municipalities, health care facilities and medical offices, and all licenced public facilities such as hotels, restaurants, etc. These lists must already exist in several places such as the Nova Scotia Environmental Health Center and the Women’s Hospital in Toronto. I understand that the Quebec government developed a least toxic products list to be used throughout government offices several decades ago. Using less toxic products would make a workforce more productive and help prevent the development of illness.

HospitalsSeveral years ago, when I investigated the use of very toxic glutaraldehyde to disinfect dialysis and respiratory equipment in Saskatchewan hospitals, I found a mishmash of products used and no provincial policy or guideline as to which effective, least toxic product to use as replacement. Again, for hospitals, a list of effective least toxic products to replace the toxic ones in current use could help detoxify hospitals and clinics and make them safer for all and more MCS friendly.

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Three years ago, I was hospitalized ten days for emergency bowel surgery at the General Hospital in Regina. My husband was my advocate and they let me bring in my air filter in my room, washed the room with peroxide with a new mop every day. I could shut the door when they were waxing the floors outside. I also found that they had bedding, gowns, towels etc. washed with no detergent or a different less scented detergent. When I could get them, it improved the conditions of my hospitalization. This type of accommodation should be available in every hospital in Saskatchewan.

However, talking to the dietician about food, it became clear that there was not much hospital food I could eat except apple and pineapple juice, as everything is processed. When I could resume eating, my husband brought me food from home. Several US hospitals have moved to freshly prepared organic food, with the results of better patient outcomes and shorter hospital stays. Ontario is also part of the hospital food revolution. (14)

Latex. I understand from an MCSer anaphylactic to latex that the P.A. health region is the only SK heath region that does not use latex gloves. With 8-17% of health care workers, up to 68% of children with spina bifida (related to frequent surgeries - anyone who has multiple surgeries is at risk) and less than 1% of the general population in the U.S. with latex allergies (13), these people are put at risk whenever they go to a doctor’s or dentist’s office or hospital.

Emergency and Poison Center (15) information lineIn theory, the Poison Center has to be consulted when patients show up at emergency with cases of poisoning. I don’t know if this is always the case. I would like to bring up the case of a friend living downwind from the COOP refinery in Regina. When her house got filled with a pulse of highly toxic hydrogen sulfide, she went to emergency. They did not recognize that it was a poisoning even though she brought literature to that effect, and wanted to admit her in the mental health ward, a totally inappropriate response. This remarkable ignorance is unacceptable in this day and age. The result is that now, when her house gets filled up with pollutants, she tries to find a ‘safe’ parking lot to sleep in her car or, if it is too cold in winter, ends up at an open restaurant for the night.

Ministry of Finance • Substantial increases to disability related tax credit amounts annually since 2007

As long as people suffering from MCS are properly diagnosed and evaluated as disabled, they will likely benefit from this program.

However, living with MCS is costly, from home renovations or even needing to move, or have a new house built with the appropriate materials, to everyday living needing to purchase ‘safe’ products which may be unavailable locally, and organic food. Is the increase sufficient?

Ministry of Central Services • $14.3 million to improve the physical accessibility of government buildings for people with disabilities.

The recommendations to make indoor environments suitable for MCSers to use are broad and cover the fields of facilities and environments in education, work, leisure, government buildings, health care, group homes and elderly homes and care. Most of the needed changes have been discussed those under these sections above.

Conclusion: The government needs to develop, promote and perhaps even enforce a policy and strategy for a move to less toxic products and approaches in Saskatchewan. “Safer” options must be known and become widely available for MCSers to more comfortably make essential outings such as going to school, to the doctor, dentist or hospital without a large worsening of symptoms.

Ministry of Parks, Culture and Sport 11

• $3 million to establish a Community Vitality Program in 2010-11 to build sustainable communities and improve quality of life by supporting projects that will enhance the accessibility and use of community facilities, build community pride, engage Aboriginal and youth in community activities and improve access and inclusion for those who experience barriers to community involvement

Indoor air quality, good ventilation and air filtration as well as good clean surroundings (no chemical pesticide use, no air contamination from neighbouring sources such as dry cleaners, refinery, garages, the neighbour’s dryer vents, etc) are essential for open accessibility to community facilities and parks.

Campgrounds in our Saskatchewan provincial parks are so full of smoke at crowded times that camping is impossible if one has respiratory problems or MCS. Smoke also causes problems for those with cardio-vascular problems. Similarly, the introduction of fire pits in municipalities is ludicrous for air quality. We keep people from burning leaves for air quality reasons, but they can burn wood all they want all summer. Regina has had to introduce measures about time of use of firepits and list the types of toxic materials that should not be burnt because people were using their firepits as incinerators, I guess. In both cases, it is the concentration of people which is a problem. One can get upwind from one fire, but one is surrounded by fires, it becomes a health issue. There should be separate campgrouds in provincial parks where no fires are allowed. These sites could cost less money because they use no wood, as what happens in Banff National Park. Firepits have no place in crowded cities and neighbourhoods, and there is very little control of substances burnt. Burning toxic substances such as treated wood, plastic or others are sources of toxic pollution.

General Conclusions

MCS is recognized as a disability and is physiological in natureAlthough Multiple Chemical Sensitivities (MCS) is now recognized as a disability at many levels of government, there is very little in the current SK government disability strategy that recognizes or supports those disabled by MCS.

MCS generally arise from physiological causes, although there are many neurological and psychological consequences. The most practical approach is to minimize potentially harmful exposures in the workplace for the health of all workers. Minimizing harmful exposures at home and school are also important. There is little existing Canadian legislation that explicitly addresses the control of indoor pollution and the tools presently in use are not sensitive enough for identification of issues and prevention of health problems.

Toxic ProductsThe United States Environmental Protection Agency has rated poor Indoor Air Quality (IAQ) as being among the top environmental risks to human health. (18) Many products (e.g. fragrances, air fresheners, body care products, fire retardants, pesticides and many others) which trigger symptoms in MCSers contain chemicals which are cancer-causing, endocrine-disrupting and/or neurotoxic. (17) They are therefore not good for anyone. There is also now universal consensus that endocrine disruption effects are caused by chemicals at concentrations normally found in the environment. (16) Many toxic products have been linked to the development of several types of disabilities. (Appendix A, C)

People Affected by MCS in Saskatchewan

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In Saskatchewan, it means that, should we have MCS diagnosis and medical care available, 24- 29,000 people would be diagnosed with MCS, many of which who would be disabled. Those currently diagnosed are more likely to be disabled because they had to be really sick in order to get a diagnosis. There is evidence is that up to a third of the population may be experiencing discomfort from chemicals in its environment. Sensitivities may be associated with higher-risk occupations and they disproportionately affect the poor, while the wealthy are more likely to be treated.(1 p 6)

Recommendations

HousingThe moneys available under the Saskatchewan Assured Income for Disability (SAID) Program have to be sufficient to ensure that MCSers keep their house, as renting presents too many obstacles to maintaining their health. Should MCSers be forced into rentals, there needs to be a government policy to develop, promote and eventually enforce a policy and strategy for a move to less toxic products and approaches in Saskatchewan rental market, as described below. Should a Disability Rental Housing Supplement be needed, it has to be sufficient to purchase organic food and supplements, scent-free products needed to maintain health, as well as air filters and new clothing, furniture or whatever is needed.

MCS Access to Essential and Leisure ServicesPatients who do not have adequate economic resources to make needed changes early in the course of their illnesses, and/or cannot access knowledgeable physicians in safe facilities, and/or who are severely chemically sensitive, and/or have co-morbid infections/other conditions are greatly challenged. For moderately or severely chemically sensitive persons, it can be risky to their already compromised health to undertake necessary activities such as shopping in a supermarket or consulting with a physician in an unsafe office (5 p 28), let alone leisure activities.

“Fragrance/scent-free hospital, home care and rehabilitation services are very rarely available, and there are no chemically safe emergency shelters. Consequently, patients with severe chemicalsensitivities may avoid seeking care, risking further deterioration and chronicity, therebybeing “caught between a rock and a hard place.” (5)

Saskatchewan MCSers Need Provincial Guidelines and Policies for Safer Alternatives and Products

Saskatchewan needs environmentally safe housing for all stages of life, safe schools and work environments, medical and social MCS diagnosis and support. Recognizing that every school division, hospital, malls, hotel, apartment managers, etc. are left to themselves to make decisions about their properties and are mostly not educated as to the issue of toxic products, their consequences and their alternatives, Saskatchewan needs regularly updated provincial guidelines and policies to make all decision-makers aware of safer and effective alternatives and products in all relevant fields. We also need inspections to ensure that buildings are maintained properly, and a provincial policy of promoting good maintenance practices and safer alternative products in the field of pest control. “Safer” options must become known and widely available for MCSers to be able to more comfortably access public buildings for essential outings as well as leisure.

Other MCS RequirementsMCSers need smoke and fire-free campgrounds as well as unscented bathrooms everywhere including in Saskatchewan parks. We need more control of fire pits and burning in communities.

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MCSers need testing and consideration of electro-magnetic fields (EMF) before any new technologies are adopted. We need reduced EMF exposure in buildings and everywhere. At the very least, Saskatchewan has to have EMF-free zones.

All Saskatchewan Health regions have to become latex-free to protect the population severely allergic to latex, many of them with anaphylactic, life-threatening reactions.

Saskatchewan hospitals should all be aware of MCS and at the very least provide accommodation in providing bedding and gowns washed with less toxic detergents, allow patient’s family and friends to bring essential food if the patient cannot eat the food provided, and be able to use less toxic products in maintenance.

MCSers also need help from healthy competent people to help us organize and support MCSers in Saskatchewan.

References

1. Canadian Human Rights Commission (CHRC).2007. Report entitled 'The Medical Perspective on Environmental Sensitivities , ' by Margaret E. Sears (M.Eng., Ph.D.)

2. Canadian Human Rights Commission's recognition of MCS   Accommodation for Environmental Sensitivities: Legal Perspective' By: Cara Wilkie and David Baker. The opinions expressed in this report are those of the author and do not necessarily reflect the views of the Canadian Human Rights Commission.

3. http://latexallergyresources.org/statistics 4. http://www.epa.gov/opp00001/ipm/ 5. Environmental Sensitivities-Multiple   Chemical Sensitivities Status Report   Advances in Knowledge, and Current

Service Gaps. Environmental Health Clinic. Women’s College Hospital, Toronto, Lynn Marshall MD, FAAEM, FRSM, MCFP et al. October 31, 2010Updated February 17, June 2, 2011

6. Multiple Chemical Sensitivities Under Siege. 2001. Ann McCampbell, MD. Chair, Multiple Chemical Sensitivities Task Force of New Mexico. http://www.tldp.com/issue/210/mcsundersi.htm

7. Angell, Marcia.2004. The Truth About the Drug Companies How they deceive use and what to do about it. Random House. (Former editor in chief of the New England Journal of Medicine)

8. Fagin, Dan et al. 1999. Toxic Deception How the chemical industry manipulates science, bends the laws and endangers your health.

9. http://www.snapinfo.ca/info/industrys-shenanigans 10. Davis, Devra. 2002. When Smoke Ran Like Water. Basic Books. (Devra Davis is an eminent U.S. scientist who has

been scholar in residence at the National Academy of Sciences and member of the Hazards Investigation Board under President Clinton)

11. http://www.snapinfo.ca/info/alternatives-to-pesticides 12. Bower, John. 1997. The Healthy House. The Healthy House Institute. Website: http://www.healthyhouseinstitute.com/13. http://latexallergyresources.org/statistics#sthash.3oyipDA6.dpuf 14. http://www.cbc.ca/news/health/hospital-food-revolution-takes-root-1.1162341 15. SK Poison Center 1-888-454-121216. http://www.snapinfo.ca/info/health/endocrine-disruption 17. http://www.snapinfo.ca/links/health under toxic products.18. Achieving Healthy Indoor Environments - A Review of Canadian Options ( CMHC) now relocated at

https://www03.cmhc-schl.gc.ca/catalog/productDetail.cfm?cat=38&itm=1&lang=en&fr=1399914528636. The Pollution Probe report was produced in 2000 and the CMHC page updated in 2006. Report at http://www.pollutionprobe.org/old_files/Reports/IAQ%20front%20section.pdf

19. multiple chemical intolerance and indoor air quality .2000. by CS Miller. dspace.mit.edu/bitstream/handle/1721.1/1562/%2329.PDF?sequence... p.27.20

Further useful references.

Preventing Discrimination      

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  Practical Guide for Employment Accommodation for People with Disabilities  from the Disabled Women’s Network of Ontario            Employers’ Practical Guide to Reasonable Accommodation Under the Americans with Disabilities Act

TABLE 27.5 Strategies for Accommodating Chemically Intolerant Individuals multiple chemical intolerance and indoor air quality .2000. by CS Miller. dspace.mit.edu/bitstream/handle/1721.1/1562/%2329.PDF?sequence...p. 27.20

Understanding & Accommodating People with Multiple Chemical Sensitivity in Independent Living. 2002. Pamela Reed. Ph.D. James Madison University. http://www.ilru.org/html/publications/bookshelf/MCS.txt

Governor's Council on Disability's Indoor Air Quality Policydisability.mo.gov/gcd/pdf/GCDIndoorAirQualityPolicy.pdf Sept 2013

Appendix A

TILT chart

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Appendix B

Building materials and other products safe for MCS

Important facts

What is the most important for indoor air quality that can maintain health and protect MCSers is to choose materials with the lowest content in volatile organic compounds (VOCs) and have strictly enforced smoke-free policies and scent that include cleaning products.

Material Safety Data Sheet (MSDS) sheets cannot be reliably used to identify ‘safe’ products. MSDS sheets are developed by the producer. They will only list proven harmful chemicals. Industry lobbies hard to ensure that most ingredients used never make it on lists of harmful chemicals and therefore on MSDS sheets. Therefore, it is safe to assume that products usually contain many more ingredients than those listed on the MSDS sheet. Much of the content of products will never be listed. Also, in Canada, most pesticide products currently have no MSDS information because it was not required until recently. http://www.snapinfo.ca/emergencies/material-safety-data-sheets-msds.

The chemical concentrations that trigger symptoms in MCSers appear to be orders of magnitude below OSHA standards (usually hundreds or thousand times below). Unless OSHA limits are exceeded, which will rarely be the case, such standards have no relevance in these situations, and should not be invoked nor used as a benchmark for safety.(19 p.27.20)The same can be said for Canadian Occupational Health and Safety standards which are usually measured in ppm (parts per million) of pollutants. Occupational Health and Safety’s measuring equipment did not use to be able to measure anything below ppm, which is the outdated standard they have to enforce. Also, it is not part of Occupational Health and Safety’s responsibility to measure pollution anywhere but in workplaces.

I have requested information from Association pour la santé environnementale du Québec – Environmental Health Association of Québec (ASEQ-EHAQ) who are involved in building for MCSers in Quebec, and a builder in New Mexico and Arizona, but have not currently received answers from them about materials used. When I do, I will forward the information.

MCS Building References

Bower, John. 1997. The Healthy House. The Healthy House Institute. Website: http://www.healthyhouseinstitute.com/

Bower, Lynn Marie. 1995. The Healthy Household. The Healthy House Institute. Website: http://www.healthyhouseinstitute.com/

The Healthy House Answer Book Q&A.1997. Bower, John and Lynn Marie. The Healthy House Institute. Website: http://www.healthyhouseinstitute.com/

NOTE: The Regina Public Library used to carry copies of these three books.

Your Home, Your Health, and Well-Being. 1988. Rousseau, D. et al . Cloudburst Press book.

Making Your Environment Safe - The Chemical Sensitivity ...

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www.chemicalsensitivityfoundation.org/.../gibson-multiple-chemical-sen... Starts by discussing whether a particular building can be made safe for MCSers. Building Products & Materials - United States Access Board http://www.access-board.gov/research/completed-research/indoor-environmental-quality/building-products-materials

http://mcs-america.org/index_files/BuildingMaterials.htm

http://www.mcscanadian.org/air.html about what sources of pollutants to avoid in choosing a location for MCS housing. Including Indoor Air Quality (IAQ) Tools for Schools Kit EPA. This Kit shows schools how to carry out a practical plan of action to improve indoor air problems at little or no cost using straightforward activities and in-house staff.

Achieving Healthy Indoor Environments - A Review of Canadian Options ( CMHC) now relocated at https://www03.cmhc-schl.gc.ca/catalog/productDetail.cfm?cat=38&itm=1&lang=en&fr=1399914528636

multiple chemical intolerance and indoor air qualitydspace.mit.edu/bitstream/handle/1721.1/1562/%2329.PDF?sequence...by CS Miller - 2000 - Cited by 13 - Related articlesommended the name multiple chemical sensitivity (MCS), and offered the first of several ..... and construction materials (Hirzy and Morison 1989, EPA 1989); ...includes table 1 of triggering exposures.

IAQ Building Education and Assessment Model (I-BEAM) Text Modules: Fundamentals of IAQ in Buildings. 2006. http://www.epa.gov/iaq/largebldgs/i-beam/text/fundamentals_of_iaq.html identification of issues and some practical solutions.

Indoor Air Pollution: An Introduction for Health Professionals http://www.epa.gov/iaq/pubs/hpguide.html

Fundamentals of IAQ in Buildings | Text Modules | I-BEAM ... 2008-10-21http://www.epa.gov/iaq/largebldgs/i-beam/text/fundamentals_...... to be known as multiple chemical sensitivity (MCS ... the adsorption of chemicalsby surfaces ... commonly incorporated into building ventilation systems. ...

Building Air Quality: A Guide for Building Owners and Facility ... 2011-05-19http://www.epa.gov/iaq/largebldgs/pdf_files/iaq.pdf... to a number of chemicals in indoor air ... which is known as multiple chemicalsensitivity (MCS), is a ... to work cooperatively with building occupants and ...

Indoor Air Quality Backgrounder: The Basics 2011-12-06http://www.epa.gov/iaq/schools/pdfs/kit/backgrounder.pdf... central air-handling unit serves multiple rooms ... Asthma, allergies, or chemicalsensitivities. ... through any available openings in building walls, ceilings ...

IAQ Reference Guide: Appendix L | IAQ Tools for Schools | US ... 2013-07-10http://www.epa.gov/iaq/schools/tfs/guidel.html... Multiple Chemical Sensitivity (MCS)-Related Organizations. ... to reduce exposureto chemicals and lessen ... comparing an office building, a school ...

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Indoor Air Facts No. 4 (revised) Sick Building Syndrome http://www.epa.gov/iaq/pdfs/sick_building_factsheet.pdf

Dr. Grace Ziem's Environmental Control Plan for Chemically ...www. mcs rr.org/resources/articles/S3.html by DRG ZIEM'S - Related articlesDr. Ziem's Environmental Control Plan for her MCS Patients. ... Any products which contain toxic chemicals described as things to avoid in this book ... ZIEM OR SPECIALISTS IN NON-TOXIC BUILDING AND CONSTRUCTION MATERIALS, Toxic Substances Control Act Hotline (U.S. EPA), 202-554-1404.

MCS: Types of Housing. http://pubstorage.sdstate.edu/AgBio_Publications/articles/ExEx14099.pdf

What materials should be avoided? http://www.greenbuildingadvisor.com/blogs/dept/musings/helping-people-multiple-chemical-sensitivity Since some people with multiple chemical sensitivity become ill when they smell shampoo, it’s basically impossible to come up with a list of “safe” building materials. That said, here are oft-repeated recommendations noted by other writers:

Ceramic tile is better than carpet. Linoleum is better than sheet vinyl. Low-VOC paints are better than conventional paints. Solid-wood furniture or cabinets are better than furniture containing particleboard or plywood. It’s best to omit wood-burning stoves and fireplaces.

It's worth considering the advice provided by building scientist Josesph Lstiburek: “When we design buildings for ‘sensitive clients,’ we typically put material samples in a bell jar and put them outside in the sun for a couple of days and let the clients ‘sniff’ them. We repeat the process with a little bit of water in the jar. If they don’t bother the client, they go in the building. Much better than trying to get anything useful from a MSDS sheet.”

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Appendix C

Protecting people from environmental toxins would reduce the development of disabilities

- The % of people with MCS increases with age- At the Regina forum, I learnt that the % of people with disabilities increases with age as well.

Disabilities in Saskatchewan

I am at a disadvantage because I cannot find a list of all accepted disabilities in SK. However, I found this definition of disabilities http://www.disabled-world.com/disability/types/ (link from SK Health)

List of SOME disabilities considered invisible disabilities:

ADHDAnxiety disordersAllergiesArachnoiditisAsperger SyndromeAsthmaAutismBipolar disorderBrain injuriesCharcot-Marie-Tooth diseaseChronic fatigue syndromeChronic painCircadian rhythm sleep disordersCoeliac DiseaseCrohn's diseaseDepressionDiabetesEpilepsyFibromyalgiaFood allergiesFructose malabsorptionHereditary Fructose IntoleranceHyperhidrosisHypoglycemiaInflammatory bowel diseaseInterstitial cystitisIrritable Bowel SyndromeLactose IntoleranceLupusLyme DiseaseMajor depressionMetabolic syndromeMigrainesMultiple SclerosisMultiple Chemical SensitivityNarcolepsyPersonality disordersPrimary immunodeficiencyPsychiatric disabilitiesReflex Sympathetic Dystrophy

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Repetitive stress injuriesRheumatoid arthritisSchizophreniaSclerodermaSjögren's syndromeTemporomandibular joint disorderTransverse MyelitisUlcerative Colitis.

Body burdens of chemicals

We now know that every one of us is a repository for toxic chemicals which have been measured in humans in several studies. http://www.snapinfo.ca/info/body-burdens

The world we live in, our air, food, water and shelters are also contaminated. The links below are only about pesticides and only a few examples of contamination. Many other toxins also contaminate our environments.

Food: http://www.snapinfo.ca/issues/food-pesticides-in, http://www.snapinfo.ca/issues/genetically-modified-organisms-gmos

Water http://www.snapinfo.ca/issues/water

Air http://www.snapinfo.ca/issues/pesticide-drift, http://www.snapinfo.ca/issues/aerial-pesticide-application, http://www.snapinfo.ca/links/health under toxic products.

various pathways http://www.snapinfo.ca/info/exposure-to-pesticides

housing http://www.snapinfo.ca/issues/treated-wood,

pets http://www.snapinfo.ca/info/pets

Solutions: Integrated Pest Management http://www.snapinfo.ca/info/alternatives-to-pesticides, http://www.snapinfo.ca/issues/integrated-pest-management-ipm, organic food, filtered water, safer building and maintenance materials for housing (Appendix 2)

Disabilities known to be linked to pesticide or other toxic exposures:

Developmental neurotoxicity of industrial chemicals –A silent pandemic P Grandjean, PJ Landrigan Developmental neurotoxicity of industrial chemicals - Grandjean - Cited by 756. One out of every six children has a developmental disability, and in most cases these disabilities involve the nervous system.1 The most common neurodevelopmental disorders (NDDs) include learning disabilities, sensory deficits, developmental delays, and cerebral palsy.1 Neurodevelopmental disorders (NDDs), such as mental retardation, attention deficit disorder, cerebral palsy, and autism are common, costly and can cause lifelong disability.

There is lots of information on this topic, a lot of it under the new field of endocrine-disruption. Environmental Working Group (1) has done a lot of work on the issue including producing the Dirty Dozen List of Endocrine Disruptors (2). Our Stolen Future is a book and an up to date website (3) by

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scientists on the state of science on endocrine disruption. It is a mechanism which creates many disabilities by affecting how the body functions.

The list below links pesticides to health effects http://www.snapinfo.ca/info/health

- Birth defects- Autism and related disorders- Attention Deficit/Hyperactivity disorders- Brain damage (pesticides have significant detrimental effect on working memory and

information processing.)- Inflammation-provoking nanopollutants as a potential source of nerve cell damage .

http://www.snapinfo.ca/info/health/nervous-system-effects. They also affect the lungs and cardio-vascular system.

-  http://forum.parkinson.org/index.php?/topic/8812-inhaled-pollutants-may-damage-nervous-system/. This is a discussion of the paper and a conference, as the original is only available by subscription. In areas with high pollution, the researcher uncovered brain deposits of amyloid-beta and alpha-synuclein, proteins that serve as hallmarks of Alzheimer’s and Parkinson’s diseases in the brains of children who died accidentally. In Mexico city, ‘At age 11, Ana shows persistent, growing brain lesions, the toxicologist reported. As do the other Mexico City children surveyed. They also exhibit cognitive impairments in memory, problem solving and judgment and deficiencies in their sense of smell compared with age-matched children from a cleaner city 120 kilometers away.’ Cognitive scores are lower when living in higher pollution areas. Exposures to manganese-rich dust particles with motor impairments — such as a reduction in the speed at which children could clench their hands or sequentially touch the fingers of each hand to the thumb. ( Manganese has replaced lead as a gasoline additive). The nerves in the nose can provide a highway along which some inflammatory pollutants, such as metals, motor directly from the outside world to the brain. “Once those insoluble particles arrive in the brain, “we do not see much clearance.” So continuous exposure over time could leave substantial amounts of inflammatory particles in the brain, he speculates.”

- Depression and other mental illnesses- neuropsychological brain functions (i.e., sensation; motor performance, memory, attention,

emotion, etc.). Neuropsychological Functioning and Health-related Symptoms in a Commercial Pesticide Applicator During Low and High Exposure and Follow-up Testing.

- Parkinson Disease- Alzheimer Disease- Auto-immune diseases such as MS and ALS- Lower IQ in children- Some instances of people becoming quadriplegic after exposure to pesticides.

(http://www.mcsresearch.net/journalpapers/chemicalbarriers.pdf p. 13) One MCSer lady with MS became s disabled every time her husband would spray on the farm that she ended up in a wheelchair several months of the year.

- Diabetes- Many or most people with fibromyalgia and chronic fatigue are also chemically sensitive

therefore react to chemicals in the environment- Rhinitis and asthma

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References

1. http://www.ewg.org/key-issues2. http://www.ewg.org/research/dirty-dozen-list-endocrine-disruptors3. http://www.ourstolenfuture.org/

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