Association for the Chronic or/and Environmental Injury Illness
P.O. BOX 3131 - 00121 Rome - Italy
http://www.infoamica.org e http://www.infomcs.org
Press Release – 15th march 2004
MCS patients get the support of 20 thousand petitioners
In September 2003 an Italian Association, A.M.I.C.A, petitioned for the recognition of the MCS disease by Health Institutions in order to obtain proper health care and welfare assistance for MCS sufferers.
As of February 2004 the Association has received 20.000 signatures, which proves that Italian citizens are concerned about those patients who are severely ill and whose living conditions are often on the borderline of human dignity.
Prof. Umberto Tirelli, Director of the Oncology Department and Head of the National Cancer Institute in Aviano (Pordenone) is among the many physicians who signed this petition.
MCS causes a reaction that involves different organs each time a patient comes into contact with the chemicals contained in food or water, or through the skin, or even if the patient inhales minimum traces which are generally tolerated by most people.
All sorts of substances can trigger reactions: perfumes, hair lacquer, alcohol, disinfectants, smoke from cigarette or from gas or wood-burning stoves, dental materials or surgical prostheses, exhalations from new carpet, household cleaning products, paints, wood treatment chemicals, insecticides, pesticides or herbicides, chemicals used in fabrics or for printing and paper bleaching.
One can readily understand that a MCS sufferer will be able to survive only if he isolates himself completely, reduces his social activities to a minimum and meets only with people willing to adapt to his need for 'chemical decontamination'. Moreover, when these patients need to be hospitalized or to be visited in a public surgery, they run the risk of severely worsening their health since chemicals are to be found everywhere in these facilities.
At the beginning, MCS symptoms are similar to those of a classical allergy since they may appear or disappear according to the various exposures (some reactions might be delayed), but sensitization increases as time goes by, as does the damage caused to various organs, and a greater number of chemicals become involved, especially if the patient does not adhere to a strict behaviour protocol to avoid exposure to chemicals.
In September 2003 A.M.I.C.A. asked the Ministry of Health to at least assign a medical code to the disease so that hospital staff could treat this disease on the basis of a proper identification code, and for administrative purposes as well.
On December 10th 2004 Filippo Palombo, Physician, Chief Executive Officer gave a negative answer stating that the scientific community is still debating whether this disease may be considered organic and that the aetiology and pathogenesis of the disease are unknown and there are no statistics available on its prevalence and incidence. He went on to say that difficulty must also be considered of a univocal definition of the various cases, which is not correlated to an objective global clinical evaluation, nor can it be deduced from instrumental and laboratory tests which are indispensable for the identification of those who are entitled to benefit from a disability pension. According to Palombo: No specific DRG has been identified for patients suffering from MCS who are hospitalized, and this could derive from the difficulty of identifying appropriate treatment, in the light of existing knowledge.
This declaration demonstrates that the Ministry of Health has decided, for political reasons, to ignore the critical health-care conditions of MCS sufferers in Italy, what's more on the basis of data for which there is no evidence.
As a matter of fact, it is not true that the scientific community are still debating whether this disease may be considered as organic since it has been recognised by the U.S. Government, by U.S. Federal, State and Local Agencies, by the U.S. Federal and State Court, by the U.S. Workers Damage Compensation Council, U.S. Department of Housing and Urban Development, U.S. Environmental Protection Agency, the Social Security Administration, the Civil Rights and Equal Employment Opportunity Commissions - over 110 Federal, by State and loyal agencies and authorities (MCS is also recognized on a case by case basis as a disability under the Americans With Disabilities Act [ADA], which prohibits job discrimination on the basis of a physical disability), by the Canadian Federal and Provincial Government Agencies, not to mention in Germany where MCS is included in the edition of the WHO's International Classification of Diseases ICI10-under the code T-78.4.
Prof. Umberto Tirelli observes that MCS is a well known pathology in the United States, but also in Canada and in Germany, even though it is not easily defined and often it is difficult to distinguish it from Chronic Fatigue Syndrome and the Fibromyalgia Syndrome. The diagnosis of MCS is based however on a case reported in 1993 which foresees a series of well defined criteria.
Besides, it is not true that epidemiologic data does not exist. It unquestionably does not exist in Italy where there has been absolutely no monitoring, despite the fact that the patients themselves have for years been referring their diagnoses to the Ministry of Health (to Dr. Taruscio, the person in charge of the Rare Diseases Department).
It has been estimated that 15% of the American population has developed a greater sensitivity to the common chemicals used in household or commercial products, while from 1.5% to 3% of the population are MCS sufferers. It was specifically the Gulf War Veterans, whose health had been affected by the chemicals used in military arsenals, who mobilized public opinion and the institutions to obtain recognition of their illness, to be compensated for damages and to be granted health care and welfare services. Research workers for the Veterans Department report in fact that, in a random sample, 86% of the ill veterans who had been despatched to the Gulf claim that they have developed chemical sensitivity, compared with 30% who had not been despatched to that area.
Prof. Tirelli explains that some MCS patients may suffer from severe and chronic pains while others may have slight and occasional symptoms. Besides, the MCS disease should be classified according to the degree of disability (minimum, partial or total), the severity of the symptoms (slight, moderate, severe) and their frequency (every day, every week, every month), and according to which senses are affected (smell, trigeminal nerve, taste, hearing, vision, etc.).
Donatella Stocchi, Vice-President of A.M.I.C.A. reports that in Switzerland the Local Authorities decided to support patients by investing in the construction of special buildings, built according to precise ecological criteria, only after newspapers reported the news of an MCS patient who had committed suicide. The victim, Christiane, a 43-year old social worker, shortly before taking her life had moved four times over a three-month period of time since she could not find a suitable house.
Mrs Stocchi explains how in Italy patients are isolated in their homes (in the province of Modena a woman suffering from MCS is compelled to live in a mobile home because she cannot live at home with her family), lose their jobs and their loved ones, and become progressively and inexorably desperate and one member of the association even tried to take her life to escape from the continuous crises, but fortunately she failed. Mrs Stocchi expresses the opinion that further delay or postponement in deciding to grant social and health assistance to MCS patients is unacceptable in a so-called civilized country.
Prof. Tirelli believes that we must invest in research also in Italy and ensure that information is spread to the medical profession and to the population, as it was in the case of the CFS.
AMICA (Association for the Chronic or/and Environmental Injury Illness)
Vice President Donatella Stocchi
Prof. Umberto Tirelli
Centro di Riferimento Oncologico (CRO)
National Institute of Cancer
12, Pedemontana Occidentale Str.
33081 Aviano (Pordenone)