Interview with Wilson Gomiero, committed for the patients’ right protection as President of FEBRAPEM-Federação Brasileira de Associações civis de Portadores de Esclerose Multipla.
1. Mr. Gomiero, you are a citizen actively engaged in the protection of citizens' rights. Please introduce yourself to our readers and describe the association of patients you lead.
Since 2008 I am the president of FEBRAPEM-Federação Brasileira de Associações civis de Portadores de Esclerose Multipla, an association founded in 2001 with the objective to foster the creation, establishment and growth of associations of patients with multiple sclerosis in Brazil, as well as encouraging further research into new treatments for this pathology. We are committed to develop activities aimed at improving the quality of life of both patients and their families, promote awareness of the disease within the civil society and provide useful information to our members.
We started from the observation that in Brazil, due to its geography, cultural diversity, differences and resource mobilization capacity, it would be useful to have a specific subject which could support the needs of different groups of patients with multiple sclerosis, and more generally deal with the right to health of such patients to facilitate relations with physicians, access to drugs and multidisciplinary care, protect social rights and those related to the right to mobility as well as assist the patients in their dealings with the tax authorities.
To date, there are 31 associations part of FEBRAPEM, representing all the macro areas of the country.
As president of the FEBRAPEM, I am a member of the CONADE (National Council for the Rights of Persons with Disabilities), and participate in the Workgroup for Rare Diseases at the Ministry of Health of Brazil, where I was appointed to the Board of Directors in 2013.
I deal with multiple sclerosis since 2001 when I founded the association GATEM- Grupo Do Alto Tiete De Escleroses Multiplas in my hometown Mogi das Cruzes. I have also received an award from my town for services rendered to my community.
2. Which activities are you curently engaged in?
We are working with the National Institute of Social Security (INSS) to establish clear parameters both in terms of pensions and employment.
Our constant endeavor is to promote and affirm the concept of patient and not "bearer" of multiple sclerosis, giving citizens affected by this pathology identity and dignity.
Implementation of a database curated by FEBRAPEM and its member associations, which will allow a mapping of patients suffering from multiple sclerosis in Brazil.
Active participation in the National Health Council and various workgroups of the Ministry of Health of Brazil, developing and working on national policies for the care of rare diseases, as well as on the development and implementation of public policies for comprehensive care for people with disabilities.
Participation in the annual meeting of the Americas on the topic to develop proposals for the implementation of a global protocol by the WHO-World Health Organization about integrated care for disabled people.
3. What is the situation with patients in your town and, more generally, in Brazil?
I can olny talk about what I know, that is about the situation of patients with multiple sclerosis. Patients in Mogi das Cruzes, in the state of São Paulo, near the capital, have an association, the aforementioned GATEM-Grupo Do Alto Tiete De Escleroses Multiplas which has an office providing physical therapy, psychology support, speech therapy, social assistance for both patients and their families. We have neurologists who travel around the town administering the specific drug for multiple sclerosis, provided free by the federal government.
In general, the country has a high concentration of excellent medical care in certain areas but the work is carried out in a context of total abandonment, including lack of multidisciplinary approaches to the problem and serious socio-economic issues. On the positive side, there is a very good coverage by specific drugs for the disease, provided free by the Healthcare System (SUS).
4. Are there any activities carried out by civic associations in Brazil dealing with the protection of patients' rights? How do they operate? Which are the main difficulties they encounter?
There are many associations in Brazil committed to assist and defend the rights of patients. They are usually made up of individuals or family members of people who suffer from some type of disease who have formed associations in order to have a greater social and political voice. Many of these associations are organized at national level, but we also have many cases of regional organizations. There are also associations such as OAB-Order of Lawyers of Brazil which, through its offices, in some cases offer free legal advice.
The main difficulties encountered are related to the lack of exprience of delegates, scarcity of viable projects, inability to launch successful fundraising campaigns, lack of transparency in the presentation of results, lack of parameters for a correct evaluation of activities as well as lack of cooperation among associations which are often only motivated by the possible attainment of prestige or recognition.
5. What are the current main difficulties faced by patients in Brazil to see their right to healthcare upheld?
The lack of knowledge of their rights, a national network of public health totally disrupted in which there are only few pockets of excellence while in most cases the service is not satisfactorly performed as well as the fact that private healthcare operators face the same problems as the public system.
6. You live in Brazil, how did you learn about Cittadinanzattiva?
The first contact occurred some time ago in Rio de Janeiro with Mr. Antonio Gaudioso (Secretary General of Cittadinanzattiva) during a seminar attended by various associations and experts. On that occasion we had for the first time an overview of the activities carried out by Cittadinanzattiva.
7. How do you envisage a collaboration with Cittadinanzattiva?
We believe that the creation of structures similar to Cittadinanzattiva can be a solution, not only for problems concerning Brazil but also for most of Latin America, since we believe that only through social control by citizens, recognizing their powers and responsibilities, we can develop good public policies.
Interview by Mariano Votta, Director of Active Citizenship Network News, August 2014
President "FEBRAPEM-Federação Brasileira de Associações civis de Portadores de Esclerose Multipla", Brasile