Multiple Chemical Sensitivity prevalence rates in Australia

Prevalence rates and Impact of Multiple Chemical Sensitivity in Australia

By Dr Sharyn Martin, 2020 Update

pdf for downloading Multiple Chemical Sensitivity prevalence rates in Australia Update_2020

Prevalence of Multiple Chemical Sensitivity

Prevalence rates of between of 1.0% and  6.5% have been estimated for Multiple Chemical Sensitivity in the states of South Australia and New South Wales, and an Australia wide survey in 2018, see Table 1 (Fitzgerald, 2008, NSW dept of Health, 2002, Steinemann, 2018). The largest survey at over 15,000 individuals was in NSW where 2.9% of the population had been diagnosed with MCS. (NSW dept of Health, 2002). This was similar to a rate of 2.6% established in a smaller survey in NSW to determine health effects from a smokestack (NSW Dept of Health, 2004).   A survey of over 5,000 parents in NSW determined that 2.5% of 2 to 15-year olds had been diagnosed with MCS (NSW Population Health Survey, 2007-2008). In the South Australian study (Fitzgerald, 2008) 1.0% of those surveyed had been diagnosed with MCS, lower than the rates seen in the three NSW surveys. Fitzgerald noted that as there are no diagnostic guidelines for MCS in Australia, it is possible that 1% prevalence is due to under reporting of some of the chemical hypersensitivity individuals. Some chemical hypersensitivity individuals had symptomology more aligned with the MCS cases and could represent undiagnosed MCS. In the Steinmann 2018 study 6.5% reported medically diagnosed MCS, a substantial increase in diagnosed MCS from earlier studies. This survey estimated that 3 million Australians have chemical hypersensitivity or MCS indicating that MCS is widespread in the Australian population (Steinmann, 2018).

The prevalence rates of MCS in four countries , – the United States (US), Australia (AU), Sweden (SE), and the United Kingdom (UK) is similar with an overall 19.9% of the population report chemical sensitivity, 7.4% report medically diagnosed MCS, 21.2% report either or both. (Steinmann, 2019).

Prevalence of Chemical Hypersensitivity

Prevalence rates of chemical hypersensitivity were, 7.5% for children 2-15-year-old (NSW Population Health Survey, 2007-2008), 16% for the South Australian survey (Fitzgerald, 2008) and 24.6% in the 2002 NSW survey (NSW dept of Health, 2002). The prevalence of chemical hypersensitivity in the 2018 survey was similar at 18.9%. (Steinmann, 2018).

In the South Australian study (Fitzgerald, 2008) 6% of those reporting hypersensitivities stated that it seriously affected their quality of life, with 8.4% males and 15.7% females reporting moderate to severe problems. Within the hypersensitivity group, 15.3% males and 31.9% female participants stated that they had received medical treatment for their chemical sensitivity.

Table 1. Studies to determine rates of chemical hypersensitivity and diagnosed MCS in Australians.

  Chemicals causing illness

Chemicals that were attributed to triggering hypersensitivity in adults were perfumes or aftershaves (82.5%), tobacco smoke 42.2%, New building or renovation 40.4%, Pesticides or herbicides 37.2%, Petrochemicals 32.0% Vehicle smoke 27.1% and other chemicals 19.0% (Fitzgerald, 2008).

Odours or smells that caused illness in 2-15 year old were Cleaning agents, Petrol or exhaust fumes; Perfumes or aftershaves, Scented soap or shampoo or other toiletries, Scent of flowers such as jasmine, gardenia, wattle, etc, Fresh paint, Pesticides, and Cigarette smoke (2007-2008 NSW Health Survey).

Symptoms experienced from exposure to chemicals

The main symptoms for children from exposure to chemical odours or smells were cough or wheeze (35.6%), nose or sinus irritation (28.8%), headache (24.3%), nausea (20.8%), aches or pains (10.9%), feeling generally unwell (8.1%), feeling anxious, worried or depressed (1.8%) and fatigue (1.8%) (2007-2008 NSW Health Survey).

The symptoms experienced by hypersensitive adults included headaches (40%), asthma or other breathing problems (37%), burning eyes, nose or throat (31%), nausea or stomach problems (18%), eczema (17%), fatigue (9%) and dizziness or fever (9%) (Fitzgerald, 2008).

.The Steinmann 2018 study determined that the co-occurrence of MCS with asthma 74.6% of people with MCS are asthmatic, (diagnosed with asthma 40.8%, an-asthma-like condition 47.9, or both. Those with chemical hypersensitivity also exhibit a similar rate of 56.5% asthma or asthma-like condition (Steinmann, 2018).

The Australian survey also determined the co-occurrence of MCS with perfume sensitivity was 91.5%. These people reported health problems such as respiratory difficulties (56.3%) and migraine headaches (46.5%) following exposure to fragranced consumer products (Steinmann, 2018).

Impact and Burden of MCS

In the SA study symptomology and symptom severity suggested a significant negative impact of environmental chemicals in the community (Fitzgerald, 2008).

The 2018 Australian survey found that 55.4% with MCS felt that their MCS severity of their health problems was potentially disabling according to the Australian Disability Discrimination Act 1992 (Steinmann, 2018).

Those with severe MCS report that the chemical sensitivity has had a major impact on their quality of life.  In the Australian SA study 6% of those reporting hypersensitivities stated that it seriously affected their quality of life and 8.4% males and 15.7% females reporting moderate to severe problems (Fitzgerald, 2008).

The South Australian study found that 15.3% males and 31.9% females sought medical treatment, representing an overall 4.3% of the total population seek treatment due to chemical sensitivity and is a similar figure to that estimated by Caress and Steinmann 2003 of 6.7% in America (Fitzgerald, 2008; Caress and Steinemann, 20013).

While these studies have determined the rate of hypersensitivity and diagnosed MCS in a survey population, an ASEHA 2011 survey looked at the impact and burden associated with chemical sensitivity and how that can seriously affect a person’s life to the point where they become isolated and disabled.

In 2011, ASEHA undertook a survey of 50 Australians (26 Qld, 6 NSW, 2 ACT, 5 SA, 3 Vic, 2 WA and 3 unspecified) with MCS. The survey was designed to determine the impact and burden that MCS places on their lives, and to determine what their needs are to improve their quality of life. The survey demonstrates an area of unmet need amongst those with sensitivity to chemicals that are ubiquitous in our environment (Martin, 2015).

In the ASEHA survey 74% of participants had been medically diagnosed with MCS, the mean duration of years with MCS was 22 years (min 2 yrs. to max 71yrs) (Martin, 2015).

The factors that impact the quality of life for MCS sufferers are:

• Barriers to medical and allied health services,
• Lack of medical assistance,
• Low community and/or social support,
• Lack of safe affordable housing,
• Inability to work and financial hardship and the living adjustments required to live with MCS.

These create and perpetuate the personal distress that affects the degree of isolation and disability (Martin, 2015).

 A high number of individuals were unable to access health services including Aged care facilities. This is becoming an issue as the MCS population ages (Table 2).

The main barriers given for the inability to access these services were Poor Indoor air quality (22); ubiquitous nature of perfumes (17); use of indoor chemical pest control (3); unable to meet strict criteria to access auxiliary services and/or financial hardship (3). Indoor Air Quality issues include contaminants such as perfume and pesticides. Fragrance is the most troubling chemical and least necessary barrier to health services.

 Barriers to medical and social services encountered by individuals with MCS.

Table 2. Ability to Access medical and social services.

Poor indoor air quality is a major detriment to MCS/ES disability access to most public buildings including hospitals and other health care facilities. Many are unable to access the necessary services and care.

Similarly, the Steinemann 2018 study found that 77.5% of people with MCS have been prevented from going someplace such as public restroom or business because a fragranced product would make them sick. (Steinemann, 2018)

A major problem for people with MCS when trying to access workplaces, access to medical centres, housing and community resources is the ubiquitous use of fragrance and fragranced products. A survey conducted of the adult Australian population, showed that 33% of general Australian population report health problems when exposed to fragranced products. Of these 17.1% could be considered disabling under the Australian Disability Discrimination Act (health problems were reported to “result in a total or partial loss of bodily or mental functions”). 7.7% had lost workdays or a job due to illness from fragranced product exposure in the workplace. 15.3% reporting health problems after being in a room that had been cleaned with scented products. (Steinemann, 2017).

 Level of Support from friends, family, and General Practitioners

The ASEHA survey found that the level of support from family was 68% and Friends 44.9%. A low level of support can often be due to scepticism by family members or friends and can affect the individual’s ability to socialise becoming another burden that adds to the personal distress.

In ASEHA survey, 42.6% reported that their General Practitioner was helpful, 29.8% as sympathetic with 27.7% neither helpful nor sympathetic. The lack of support or understanding from a medical practitioner delays effective treatment and management and does not dispel the disbelief by others. For some the lack of medical support has meant that they have not been able to access social or disability support. They are unable to qualify for services or having their cases rejected due to lack of medical support (Martin, 2015).

Work and Finances

Many individuals in the ASEHA survey (84%) were unable to work, of those unable to work 68% received a disability or aged pension. A lack of financial security adds to the personal distress and can place extra strain on relationships and families (Martin, 2015).

People with MCS have lost workdays or a job (52.1%) in the past year because of their MCS and/or perfume sensitivity. (Steinemann, 2018).

Disability and Isolation

The resultant isolation felt by MCS people in our survey was found to be high for 38% of participants, medium for 50% and low for 12% of the participants. (Martin, 2015)

Isolation occurs when MCS becomes so severe the patient loses the ability to leave home to go shopping, go to church, go to the beach, park, take part in some form of entertainment, visit the doctor or the dentist. Individuals stop going out to avoid the disabling symptoms experienced when exposed to commonly used chemicals. These are ubiquitous in the indoor air of many public built environments. The need for an early diagnosis of chemical sensitivity, identification of chemical(s) involved, and avoidance strategies put into place is paramount to preventing the problem from evolving into MCS and the severe form of the disease. MCS patients should always be encouraged to move around in society as much as possible to avoid isolation.

Individuals with MCS suffer general disability from their health problems. This is combined with the disability that results from exposure to chemicals that are ubiquitous in the environment and extremely difficult to avoid.

The degree of disability amongst the ASEHA survey population was found to be 52% reporting total disability, 44% partial disability and 4% not at all. The disability (94% partial to total) and isolation (88% medium to high) indicates a need in the community which is not being met (Martin, 2015).

Isolation also happens when family and friends withdraw support because they either do not believe the MCS patient or they can no longer deal with the MCS lifestyle that is based on avoidance and special need. In many cases families and friends are not prepared to take the necessary steps such as to be fragrance free during visits.

Housing

Without prompting 16 of the 50 ASEHA survey participants noted that assistance with low allergy housing was needed.

Services Needed by those with MCS

The last part of the ASEHA survey identifies what those with MCS feel they require to assist them in improving their quality of life. A high priority in this survey was air filters, Table 3. These help in reducing the amount of pollution in the immediate area depending on the size and capacity of the filter. In some cases, more than one filter is required, and this can become very expensive with no rebates or assistance with their purchase. A car air filter can facilitate a safe haven for those needing to travel to shopping areas or health facilities. Other aides include water filters, personal masks that can be worn to avoid chemical exposures in indoor air, and oxygen for use during high exposures or recovery from an exposure. Other areas were for assistance with daily chores such as shopping, housework, and home maintenance. These can be either too physically demanding or involve exposure to contaminated environments. Living conditions was also an area of concern with needs for safe housing, respite accommodation and an advocate/carer. Unfortunately, people disabled by chemicals are not recognised as disabled. (Martin 2015)

 Table 3. Required Services/Products

 I would like to add to this with access to computers and the internet. These can reduce the feeling of isolation and allow people to investigate products and aides to assist with creating a safe environment as well as staying in contact with other people. Support groups can provide pertinent information and advice as well as companionship and sense of community.

Conclusion

MCS is a chronic disease with an average of 22 years duration and carries with it a high degree of disability and isolation. We found a high degree of unmet needs in the MCS community most prominent of which is the barriers to accessing services

Individuals with MCS disability have no opportunity to improve their lives, their health or take part in society AND are often unable to work to support themselves. They may lose the support from family and friends and can become isolated.

Income support from welfare services is insufficient to provide for their special needs in housing, disability aids, medical aids. Food and nutrient support are often required as food allergy/intolerance is often a coexisting factor along with inability to take many medications.

Some need extensive home modifications made to reduce levels of mould and Volatile Organic Compounds (VOCs) in the home environment. Disability accommodations need to be made safe for the chemically sensitive. This applies to hospitals and other health care facilities, in-home services, emergency services, aged care facilities and the workplace to allow disability access without discrimination. This may be as simple as making a fragrance-free environment by engaging in education of staff that fragrances are solvent based products, can be dangerous and can significantly contaminate indoor air.

MCS is a hidden disease. Sufferers are often isolated from friends, family, and community by their illness. I hope that by gathering and disseminating information that highlights these problems it will raise awareness of these issues and the unmet needs of those with MCS.

Unmet needs the way forward

All of the results in the ASEHA survey are reflected in the Australian National Register of Environmental Sensitivities (ANRES) latest update. The data shows that for people with MCS there are significant hardships with a lack of access to medical facilities (77.9%) and affordable suitable housing (60.3%). 81% of people are having problems with employment or having sufficient income. The area where most hardship is felt is with relationships and or social interactions at 90.2%. Accessing public places is also high at 69.5%. (Martin S, 2019)

Targeted educational programs are required to promote awareness of MCS amongst service providers including Complementary Medicine practitioners about the need for safe non-perfumed environments. There is also a requirement for education regarding the dangers of exposure to commonly used chemicals and the relevance of these to a MCS person’s life. In the Fitzgerald 2008 survey, the Final question of the phase II survey asked participants: – Do you agree or disagree with the statement? Chemical sensitivity is a valid health condition with valid symptoms. 86% agreed or strongly agreed with this statement.

There needs to be an acknowledgement of the necessity for Clinical Diagnostic guidelines for MCS and other Environmental Sensitivity diseases, and to act on the recommendations of the 2010 Australian MCS scientific literature Review. While many General Practitioners may recognise some of the symptoms of MCS, the lack of Clinical Guidelines is inhibiting the early recognition of a disease that can be prevented or at the least managed to prevent it developing into a chronic disease that leads to financial hardships, loss of a social network to the point of complete isolation in order to survive.

Prof Anne Steinemann in her conclusion in the article ‘Prevalence and effects of MCS in Australia 2018’ recommends that “reducing exposure to problematic sources is critical for both primary and secondary prevention: to prevent people from acquiring MCS, and to reduce the frequency and severity of adverse health and societal effects among an estimated 3 million Australian who already have chemical sensitivity or MCS” (Steinemann, 2018)

References

Caress S and Steinemann A (2003) A review of a two-phase population study of multiple chemical sensitivities. Environ Health Perspect 111(12): 1490–1497

Fitzgerald D, 2008. Studies on self-reported multiple chemical sensitivity in South Australia. Environmental Health 8, no3. 33-39.

Martin S, 2015. MCS A snapshot for Action. Environmental Sensitivities Symposium, March 2015.Available at http://www.asehaqld.org.au/index.php/multiple-chemical-sensitivity/aseha-mcs-publication/140-a-survey-of-individuals-with-mcs-in-australia-2011

Martin S, 2019 https://anres.org/2019-anres-data-update/

NSW Department of Health 2004. Investigation into the possible health impacts of the M5 East Motorway Stack on the Turrella community. Phase 2 – a cross-sectional survey of symptom prevalence. www.health.nsw.gov.au

NSW Department of Health. 2002 NSW Public Health Bulletin Supplement Volume 14, Number S-4 December, p.81. 2003 The NSW Adult Health Survey. www.health.nsw.gov.au; http://www.health.nsw.gov.au/phb/Publications/NSW-adult-health-survey-2002.pdf

NSW Population Health Survey 2007-2008 Report on Child Health www.health.nsw.gov.au

Steinemann A., 2019. International prevalence of chemical sensitivity, co-prevalences with asthma and autism, and effects from fragranced consumer products. Air Quality, Atmosphere & Health (2019) 12:519–527 https://doi.org/10.1007/s11869-019-00672-1

Steinemann Anne. 2017 Health and societal effects from exposure to fragranced consumer products Preventive Medicine Reports 5 (2017) 45–47

Steinemann, A., 2018. National prevalence and effects of multiple chemical sensitivities. J. Occup. Environ. Med. 60 (3), 152–156.