The tedious path of people with fibromyalgia

A survey revealed that most patients do not access the disability certificate. Some are not even given a turn to try to process the document.

World Fibromyalgia Day was commemorated on May 12. From Fibroamérica, a civil association dedicated to the defense of the rights of people with this condition, chronic fatigue syndrome and multiple chemical sensitivity, stressed the need to include these conditions in the regulations that express which diseases merit the delivery of a single certificate of disability (CDU), the inclusion in the scale of pensions and retirement, and its inclusion in the Compulsory Medical Program (PMO).
According to the survey revealed to patients carried out by the entity, only 10, 3% percent of people with fibromyalgia surveyed, mostly women, accessed the certificate of disability. And 1 in 3 received it for other rheumatic diseases, not for their fibromyalgia.
When asked about the reasons for the denial, 27% explained that they argued that fibromyalgia is not a disabling disease, 12% said that they were not even given a shift and 5% said that the doctors on the board were not They recognized symptoms of obvious disability.
Likewise, half of the patients surveyed (52%) did not even begin the procedures to obtain the certificate. Among the reasons why they did not request it, are the lack of knowledge and the impossibility due to the personal cost that implies (because they are sick) carrying out the entire process. The steps to obtain the certificate include two visits to the doctor and two to the office where the studies must be presented. Finally, patients tend to express fears about the relapse that can result from the stress generated by the denial of the document.
Through the survey, the “mystery” of the repeated denials was resolved upon discovering that the medical boards are governed by resolution number 1019 of the National Rehabilitation Service (SNR) -which only includes a small group of diseases on its list. such as myasthenia gravis, multiple sclerosis, rheumatoid arthritis, lupus, psoriatic arthritis, ankylosing spondylitis and maturational delay-, excluding fibromyalgia and chronic fatigue syndrome in opposition to the Right to Health of the International Declaration on Human Rights, rights over non-discrimination and the International Convention on the Vocational Rehabilitation and Employment of Disabled Persons of the International Labor Organization.
Although the definition of disability included in Law 22,431 defines disability as “the functional alteration that implies alterations in integration” and that this condition is scientifically based on these pathologies, among the explanations for not granting it or even giving the turn to request it, medical boards often claim that it is not a disabling condition.
According to the Spanish Federation of Rare Diseases, fibromyalgia “reduces the activity of the person between 50% and 80% compared to what was done before getting sick.” The quality of life of patients is very poor, even lower than that of HIV sufferers. ”
Blanca Mesistrano, president of Fibroamérica, explained that “the severity of the symptoms makes them unable to fulfill their daily tasks and since the symptoms are not visible nor can they be revealed in studies or in their physical appearance, everything contributes to not being taken consider”. In this way, patients can not justify their sick leave. Up to 40% of them lose their jobs and social work, leaving without the necessary licenses that every sick person deserves. “Thus, impoverished and ill, without medication or treatment, they are forced to ask for the certificate of disability that would allow them to keep or get a job and relieve their situation.It is essential to take pressure off the patient for their recovery and give support to face their therapies “, completed Mesistrano.
To remedy this difficulty, the deputy Roy Cortina presented a bill in the Buenos Aires legislature that recognizes fibromyalgia and chronic fatigue syndrome as disabling diseases, so that the disability certificate can be delivered in the City of Buenos Aires. The bill declares the omission or injury to the rights of people with these diseases by medical boards as an act of discriminatory mistreatment.
Fibroamérica supports the bill and has decided to collaborate with the authorities providing all the necessary information to achieve the inclusion of these pathologies in the list of disabling diseases.
Beyond this specific project, Blanca Mesistrano insists that “patients with fibromyalgia, chronic fatigue syndrome andHe expects that the national law that recognizes their rights will be sanctioned, whose project was presented four years ago “. An investigation carried out in Spain, which was called Work, Family and Social Environment in patients with fibromyalgia in that country, concluded that Having this health problem implies a high impact on the families of the patient and that has a serious impact on the ability to work. According to article 2 of Law 24,431, a person with permanent or prolonged functional impairment, physical or mental impairment, is considered disabled. mental, that in relation to their age and social environment imply considerable disadvantages for their family, social, educational or laboral integration. Both fibromyalgia as chronic fatigue syndrome and multiple chemical sensitivity are considered as motor disabilities. visible demonstrations threatens its recognition by those in charge of establishing political as public. “As it is not included in the regulations, the doctors who treat them do not have the means to help their patients obtain the certificate. This decision contradicts international treaties, our legislation and the classification of the World Health Organization, “explained Blanca Mesistrano.


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