Environmental Project, 988 – Multiple Chemical Sensitivity, MCS

Multiple Chemical Sensitivity, MCS

8 How MCS is dealt with by the authorities

8.1 The US and Canada
     8.1.1 Regulation and recognition
     8.1.2 Conclusion
8.2 Europe
     8.2.1 Regulation and recognition
     8.2.2 Other activities
     8.2.3 Conclusion
8.3 Conditions in Denmark
     8.3.1 Authorities
     8.3.2 Examination of persons with MCS
     8.3.3 The Danish MCS Organisation
     8.3.4 Conclusion and recommendations

8.1 The US and Canada

8.1.1 Regulation and recognition

Overview of previous activities in the US

Annex E gives an overview of measures and initiatives taken by authorities and private organisations with three principle aims: research into the causes of MCS, recognition of MCS in social legislation, and efforts of prevention during the period 1979-1996.

On Annex E:

Politicians, courts and the social authorities have recognized MCS pro forma, and current legislation gives patients with MCS the right to various social benefits due to their illness. This has been effected through court rulings in several US states. The court of appeal in California has ruled that one person's illness (MCS) was caused by many years of exposure to polychlorinated biphenyls, and that he should be compensated.

In 1989, the Directorate of Social Services in the US put MCS on the list of illnesses that give the right to disability benefits. As part of a warning system in connection with outdoor spraying with pesticides, ten states in the US have passed a bill to establish a “register of persons sensitive to pesticides” (Langley, 1995).

The physicians and scientific societies were initially against, or hesitated to take part in, research connected with MCS. In California, the local medical association counteracted a bill on MCS research passed by parliament, so the governor ultimately annulled it. The Board for Environmental Science and Toxicology under the National Academy of Sciences has not followed the recommendation from the academy to implement research into MCS. From 1990 the physicians group were more willing to participate in government activities, most of which were mediated via the ATSDR (see chapter 3).

In 1994 the government in the state of Washington established several medical centres for diagnosing and treating chemical illnesses (Langley, 1995). This initiative was followed by a scientific foundation of 1.4 million US$ for research, e.g., in MCS.

The last important government action concerning MCS was to establish the intersectorial working group with the task of writing a report on current knowledge of MCS (Interagency rapport, 1998).

Present practice

The US Environmental Protection Agency (EPA), which is responsible for the external environment, seldom receives enquiries concerning MCS.

The US EPA has been deeply involved in MCS research projects for many years, especially in connection with indoor air pollution. The administrative focus is mainly on dissemination of information rather than regulation, follow-up and other control activities.

The US EPA has cooperated closely with the health authorities and with the ATSDR for many years in their support of MCS research, but at present there are no new plans concerning chemicals and MCS.

National Institute for Occupational Safety and Health (NIOSH)

Every year, the NIOSH, which is responsible for the working environment, receives several hundred enquiries concerning MCS via a free information service. The NIOSH issues information material on MCS and makes workplace assessments on demand if requested by employees, management or authorities. There are no new activities concerning MCS.

Canada, previous activities

On two occasions, the health authorities in the province of Ontario and the Dominion Government initiated MCS research and at the same time supported MCS patients in 1985 and 1990 (see Annex E).

The first Division of Environmental Medicine in Canada was established in the province of Nova Scotia, in the beginning of the 1990s. During a two-year period, more than 500 employees from the local hospital were examined due to indoor climate problems. In the course of seven months many had developed chemical hypersensitivity, including MCS. Because a majority was of the opinion that odours were among the most common triggering factors, the health authorities, in collaboration with the hospital management and the labour union, issued a ban on perfume and scent-containing products in the hospital. The ban was implemented and followed up in a “soft” manner with good results (Fox, 1999).

Later, several schools and the public transport services took similar initiatives. The Union of Perfume Producers and Dealers opposed a ban on perfumes in schools, on the grounds that the cause of MCS had not been proven. The initiative group pointed to the fact that odours contribute to a deterioration of indoor air quality and can cause asthma in children, which is common in Nova Scotia. The ban was not effectuated. Many schools have, themselves, initiated an odour-free environment and have had good experience with the effort.

This is an example from Canada of a decentralized, interdisciplinary and intersectorial effort to prevent MCS, with the participation of labour unions and the people. The background material available shows that the Canadian authorities concentrate on prevention by focusing on scents.

Health Canada (HC), present practice

The health authorities have been willing to recognise three environmental illnesses (MCS, chronic fatigue syndrome, and fibromyalgia), even though their existence has not been proven objectively. As a part of the process of recognition, the patient associations were to meet at a conference with, e.g., the cosmetics industry and medical specialists. Since the patient association, however, would not meet with the industry, HC gave up its plans.

A committee in the Canadian Parliament is still exerting pressure to get MCS recognised as an illness, in order to find solutions to the social problems experienced by many people with MCS.

The Town Council of Ottawa supported a local initiative to limit the private use of pesticides in order to prevent MCS.

The industry and dealers of perfumes and cosmetics set up a cooperative body together with their partners in the US to establish an information campaign warning against closing the cosmetics industry on the basis of undocumented, doubtful proof of connections between MCS and odours.

8.1.2 Conclusion

In the US and Canada ways were found at state and province levels to deal with MCS patients with compensatory and social problems, and examination and treatment facilities were established.

The central authorities in the US took part in and supported the medical research having to do with MCS and they actively disseminated information on MCS. But the background material shows that interest in MCS is dwindling. The authorities are now focusing more on the Gulf War Syndrome.

In Canada the health authorities seem more disposed towards a “normalisation” of the recognition of environmental illnesses, than in the US. No new initiatives have been taken regarding MCS research. Health Canada is preparing a proposal, tightening regulations on perfumes and chemical products. And, together with the environmental authorities, the Canadian health authorities have taken part in decentralized initiatives for prevention.

Most of the MCS patients in the US and Canada are, of course, examined and treated at the so-called clinical-ecological centres dispersed in both countries. Although precise information is lacking, it seems that many clinical-ecological centres in Canada are cooperating more closely with the established health service than is the case in the US.

Patient organisations in Canada have had some success taking action for odour-free environments.

8.2 Europe

8.2.1 Regulation and recognition

In connection with the preparation of this report, several European countries (Norway, Sweden, Finland, Germany, The Netherlands, England, Ireland, France, Austria, Belgium) as well as the environmental agencies or administrations concerning the control of chemicals in Canada and the US were asked for information on the present policies regarding the MCS problem, possible strategies, and ideas and plans for new initiatives.

All except Austria and Belgium responded. MCS is known in all of the countries, but it is not recognised in any of them as a disease in its own right.

The Environmental Chemicals Unit under the British Ministry of Health (now Department of Health), which is a special committee composed of selected experts, has gone through all available literature on MCS. It did not find sufficient evidence to express an opinion on possible disease mechanisms or to recommend further research on the subject. The committee recommended future developments on MCS to be followed closely.

MCS was not recognised as an disease in any of the countries contacted, and no preventive activities were going on. The environmental authorities in several countries referred to the country's expertise/authority in environmental medicine (Sweden, Germany, The Netherlands), while Ireland, England, and France referred to their occupational health authority or institute. The inquiries were perhaps sent on because they had not been sent to the proper authorities, or because in some countries it was unclear who is the proper authority to deal with this relatively new and controversial matter.

The Swedish authority in environmental medicine has performed a nation wide investigation of the incidence of MCS (results not received). The authorities in Germany have divided responsibilities between the Ministry of Health, which is responsible for the clinical definition of MCS, and the Federal Environment Ministry, which is responsible for the effects of chemicals on health in connection with MCS^[5]. Both ministries get technical support from the Robert Koch Institute (National Institute of Health) and Umweltbundesamt (the environmental protection agency) respectively.

Annex H has a list of investigations of MCS, which were terminated or were still in progress in 2002. These investigations were to map the causes and the course of MCS, and act as quality control for and evaluate the methods used for investigation, diagnosis and treatment.

The German Ministry of Health is strengthening the examination and treatment capacity for environmental illnesses, including MCS.

The French Institute for Working environment (Institut National de Recherche et de Sécurité, INRS) knows MCS by the name of Syndrome d'intolérance aux odeurs chimiques (SIOC), and examination, diagnosis and treatment is done at occupational medicine hospital wards (see also section 4.1).

8.2.2 Other activities

Sweden and Germany are exceptional in having clinical-ecological centres for environmental illnesses.

Several “Ambulanz” centres for the examination and treatment of patients with environmental illnesses have been established in Germany. At least once a month MCS problems are discussed in the media on the basis of opinions expressed by the patients and the Ambulanz physicians. Information from the media has made many people call on their own physicians for examination, because they fear that they might suffer from an environmental illness.

A Centre for Environmental and Occupational Stress (CEOS) in Uppsala, Sweden treats people with MCS, electricity allergy, and stress related illnesses.

8.2.3 Conclusion

Environmental authorities in other European countries know of MCS but have not done anything in particular in this respect. In Sweden and Germany the sections for environmental medicine of the health services are conducting public surveys on MCS. Both countries have clinical-ecological centres for the treatment of environmental illnesses and there is an awareness of environmental illnesses among people in general.

8.3 Conditions in Denmark

MCS does not have an official name in Denmark. Occupational physicians call it odour hypersensitivity or solvent intolerance. The condition is not officially recognised as a disease.

8.3.1 Authorities

Current rules and practices having to do with chemicals and the environment are not specifically aimed at the hypersensitivity of MCS patients towards chemicals. The current practice of the Danish Environmental Protection Agency (EPA) concerning regulation of chemicals focuses primarily on finding problematic chemicals having particularly serious health effects, such as cancer, allergy, reproductive disorders, etc., with the aim of regulating these substances in order to prevent people from becoming exposed to them.

The environmental regulations, which, i.e.., ensure the protection of the people against harmful chemicals in air, earth, and drinking water, also protect MCS patients to some degree, since pollution of these media must not result in smell and taste.

Several MCS patients have approached the Danish EPA, i.e., in connection with complaints concerning Rentolin, a chemical product used on wood surfaces.

Consequently, the Danish Minister for the Environment has banned its use indoors. It must be labelled for outdoor use only.

Then, on 1 February 2000 the Danish EPA issued a statutory order limiting or banning private use indoors of surface treatment agents for walls, ceilings, and floors with high concentrations of volatile organic solvents. Products with a high concentration of volatile organic solvents must be labelled: “Must not be used indoors on ceilings, walls, and floors”.

In 1999 the Danish EPA, together with the National Consumer Agency of Denmark and the Danish Government Home Economics Council produced an information leaflet on wood maintenance and the environment, which contains good advice on choice of paints, also with regard to indoor climate. In 2001 the Danish EPA, together with The Asthma and Allergy Association issued a leaflet on choosing wood for indoor use: “Wood breathes – and so do you” (only available in Danish). The leaflet offers advice on choice of wood, which emits least chemicals to the indoor climate.

An information leaflet on chemicals in clothes, urging people to wash new clothes before use, was issued in 1999.

An information campaign called ”Do it yourself safely” was run in 2001, aimed at raising awareness of the new rules and of the importance of airing thoroughly after having painted.

The program “systematic mapping of chemicals in consumer products” includes projects for gaining more knowledge on the subject, i.e., mapping of scents in cleaning materials and other consumer products.

In 2001 the Danish EPA started a debate on the unnecessary use of chemicals such as scents in textiles and dyes in cleaning materials. The aim is to start a public debate on the extensive use of chemicals in modern society – where some chemicals are used, even though they provide no technical benefits to the products.

The Danish EPA is striving to strengthen its efforts in areas having to do with protection against effects harmful to health. This report is a first step towards gaining more knowledge concerning the hypersensitivity of certain groups of people, and towards focusing on areas where people are exposed to unnecessary chemical effects.

The Danish Working Environment Authority knows of MCS or odour hypersensitivity, but it has not dealt with the syndrome. Inquiries have been directed to the National Institute of Occupational Health (AMI), which has much experience in the health effects of indoor air pollution.

During the last 20 years, several Danish institutions have been at the forefront of indoor climate research. One of the most effective results of this research is the implementation of labelling building materials with associated rules and guidelines, which was achieved as a cooperation project between several ministries. As a first step, efforts have been focused on reducing indoor chemical and biological air pollution (especially in high concentrations).

The National Agency for Enterprise and Housing has the statutory responsibility for construction materials in buildings, and thus also for air quality indoors. The Danish Building Research Institute cooperates with the institutions mentioned above (EPA and AMI) regarding indoor climate.

The health authorities (The National Board of Health and the regional public health officers have not yet dealt with issues regarding MCS.

In its proposal for a research strategy, the Danish Medical Research Council has prioritised an area in which the needs of MCS can possibly be met: research into the importance of indoor climate for diseases of the airways and lungs, the skin, and the digestive system.

The National Board of Health has also set up an interdisciplinary working group on research into alternative treatments having to do with prophylaxis, diagnosis, and treatment which lie outside the present limits of the Public Health Service. This working group might be able to support research into the incidence of MCS in Denmark.

8.3.2 Examination of persons with odour hypersensitivity

In the 1980s many patients with special intolerance towards organic solvents were examined at the Clinic of Occupational and Environmental Medicine and the Department of Oto-rhino-laryngology at the National Hospital of DenmarkCopenhagen University Hospital (Risgshospitalet).

An open provocation test (described in chapter 7) gave both the patient and physicians concrete results, to which they could relate: positive results showed that the patient reacted to certain odours with physiological changes. This documentation has made it easier to get social authorities to accept, e.g., rehabilitation measures. At the time, many patients were in danger of being given long-term sick leave or being fired.

Other MCS patients were examined at a county Clinic of Occupational Medicine. The examination usually revealed no certain signs of disease, and the diagnosis was odour hypersensitivity. Lung and allergy specialists know of MCS but have not been interested in examining patients with MCS.

Most medical practitioners have limited knowledge of MCS/odour hypersensitivity and are, therefore, poorly prepared to help MCS patients.

Many patients continue to feel ill and at the same time “rejected” by the Danish Health Service. They seek alternative physicians and practitioners and have founded a patient society called The Danish MCS Organisation.

8.3.3 The Danish MCS Organisation

The organisation has 225 members, all of whom suffer from MCS.

The organisation is presented in Annex F, which describes the five main aims of the organisation. Annex G describes some patients' experiences in the Danish health care system. It is not clear, whether the members have been exposed to chemicals in their homes or at work. Plans to examine the members at the clinics of occupational medicine at Bispebjerg and in Slagelse could not be executed. The members wished to be examined in their homes, which the physicians could not do.

8.3.4 Conclusion and recommendations

MCS patients have a problem, which the authorities and the medical care system cannot tackle at present, due to lack of knowledge and because some questions relating to definition/recognition of the illness are still unanswered. MCS patients say that they lack support from the established health care service and that they cannot get support from the social services department, because the condition is not recognised as a medical disease. Many have problems being out-of-doors or in public buildings, due to exposure to odours in these places which make them ill.

Most of the known cases of MCS in Denmark have been described by occupational physicians and a few oto-rhino-laryngologisty physicians and are caused by exposure at work. Although the risk of exposure to chemicals at work is less today than previously, the risk of being exposed to high concentrations of chemicals is still there (e.g., in the case of accidents or unforeseen leakages). And impacts from poor indoor climate at work still present a problem.

The labelling of building materials for a number of years has, presumably, had positive effects on the indoor climate, and thereby also on the number of MCS cases. The extent of the problems with exposure to chemicals in private homes and during off-hours is unknown.

Many Danes, in addition to those with odour hypersensitivity, are bothered byscents, which have been added to consumer products (unnecessary chemistry). In addition to the fact that the contents of chemicals in these products is unknown, the consumers also risk becoming exposed to chemicals, where they would not expect to, e.g., from dry-cleaned clothes.

The Danish EPA, the National Board of Health, The Danish Working Environment Authority, and the National Institute of Occupational Health have not dealt with MCS - except in connection with specific cases - because of difficulties in defining MCS and the many different perceptions regarding the existence of the phenomenon.

It is important that the basis for future efforts against MCS be defined. Should it be on the basis of purely medical considerations (objective medical proof of MCS) or has MCS become a public concern, even though the illness has not been recognised as such? The problem can, to some degree, be illustrated by the different attitudes towards MCS by the authorities in the US and Canada.

From a hygienic and health viewpoint, there seem to be good arguments for prophylactic measures by the authorities. The task is surely best solved through a coordinated effort from all parties.

The most essential and natural areas to focus on in order to reduce the development of MCS symptoms are:

To reduce the risk of exposure to chemicals in comparatively high concentrations, and then
to limit chemical odours in low concentrations.

Such efforts will create a cleaner and healthier indoor climate in public buildings and private homes. It is quite possible that increased efforts within existing areas of focus can reduce the chemical pressures, which will limit the development of MCS and benefit persons with MCS.

Particular attention should be paid to the special circumstances having to do with the MCS trigger phase, since reductions of already low concentrations of chemicals are expected to benefit MCS patients by reducing their complaints.

Seen in this context, the environmental authorities must use new prophylactic strategies. A general reduction of exposure to chemicals must be added to the current assessment of the hazardous effects of chemicals (at present not including MCS effects).

In connection with the prevention of MCS it is important that people in general take part in raising the awareness and decision-making concerning the use of chemicals, especially scents, in their homes and for personal use. Only through individual participation by citizens will it be possible to reduce unnecessary odour pollution in public surroundings.

This puts special demands on dissemination of information and debate-creating activities aimed at making the citizens do their part. It must be made clear to some citizens that others cannot cope with perfumes, before they realize that they must choose to show consideration. Joint initiatives among environmental authorities and citizens in Canada are described in sub-section 8.1.1.

Similar demands for new thinking about prophylactic initiatives apply to scents added to consumer goods. See the recommendations in section 9.3.

Similar considerations concerning prophylactic efforts also apply to the health and working environment fields. Several fields of action would benefit mutually from a coordination of planning and implementation, perhaps also involving other sectors.

Footnotes

[5]. This activity is part of both ministries' common action program for environment and health within the framework of WHO's National Environmental Health Action Programme (NEHAP).