 Report on the meeting held June 12, 2010 at Buenos Aires to relaunch the World Parkinson Disease Association, with the co-operation of the Grigioni Foundation for Parkinson's disease and all the associations in South America.
The participants to the meeting for the relaunch of the World Parkinson Disease Association held in Buenos Aires included the President of the Grigioni Foundation for Parkinson's disease in Italy and the Presidents of all the Associations of patients with Parkinson’s disease in South America. INTRODUCTIONThe meeting started with the commemoration of Paul Maestrone, co-founder of WPDA in 1990. Paul, an Italian researcher who moved to the US, dedicated most of his life to the improvement of the quality of life of patients with Parkinson's disease in the capacity of Director of Scientific Affairs at APDA, the American Parkinson’s Disease Association. He was also one of the founders of AIP Associazione Italiana Parkinsoniani and ensured fruitful communication and exchanges between APDA and AIP. He thus realized how useful international exchanges can be and became the promotor of an international non-profit institution dedicated to international relations among patient Associations.
Sarah Sidoti, President of ACEPAR Asociación Civil Enfermedad de Parkinson and Prof. Gianni Pezzoli, President of the Associazione Italiana Parkinsoniani and the Grigioni Foundation for Parkinson’s disease, remembered what his heart’s desire was:
" I would like WPDA to be up and running when I die."
IProf Pezzoli quoted these words of his, stressing the importance of the relationship Paul Maestrone had with Sarah Sidoti. He considered her the right person to help him make WPDA grow and achieve his objective.
SOUTH AMERICA ASSOCIATIONSBRAZILSamuel Grossmann
Samuel Grossmann, President of the Associação Brasil Parkinson, told the history of the PD Association in Brazil, a country with 180 million inhabitants. When his wife developed the disease in 1980 he discovered that very little was known about the disease in Brazil and the that Government did not give any help to patients. The patients, left to manage on their own, often developed severe depression and shut themselves up in their home, retreating into their shell – one of the main reasons why nobody knew about the disease in the country. He and his wife decided to fight the disease and founded the Association on 10 December 1985. The municipality of San Paolo donated an old warehouse to the Association and he showed how it was progressively transformed into a modern building designed to offer a broad range of services to patients with Parkinson's disease: psychological support; nutritional advice; rehabilitation including dancing and Lee-Silverman voice training; occupational therapy, such as art therapy; conferences with neurologists to discuss scientific aspects; and social opportunities to meet and interact with other patients. He stressed that nothing has changed in the last 30 years; the Government still does nothing for the patients, only the municipality gives some support. The association has grown and offers its services exclusively thanks to private donations. At the moment it has 1,700 members.
CHILEUrit Lacoa, Patricia Garcia
rit Locoa President of the Liga Chilena del Parkinson, founded in 1986, has embraced the mission of the Association "to make room for caring and sympathy”, promoting the preservation of independence of the patient by means of an holistic approach to the disease (including neurology, psychology, physiotherapy, speech therapy, nutrition, biodancing with African instruments, dermatology). The Association also has an Educational role in co-operation with the Universities of Chile and organizes courses for caregivers. It also sells anti-parkinson drugs with discounts. Out of the 1,800 members they have, 1400 attend the Association mainly to get drugs at lower prices.
Together with Patricia Garcia, who heads a chapter in Concepción, far away from the capital, Urit Locoa reported their attempts to obtain government support for the patients. At the moment only 72% of the population is covered by partial government medical insurance (Fonasa), 16% has private medical insurance and about 5% has military medical insurance. They have managed to get Parkinson’s disease included in a pilot plan (AUGE) in 56 diseases associated with high mortality. The inclusion in this list enables them access to both government and private research and healthcare funding They hope to make the Association becomes a Center of Excellence, a reference for all the 35000 patients suffering from PD in Chile, a country with 17 million inhabitants.
Patrizia Garcia also pointed out that at present, even when the patient has access to healthcare, there are major limitations: only two medical examinations, usually not by experts, on account of staff shortages. The only drugs available are levodopa and pramipexole, plus quetiapine if the patients develop hallucinations.
Unfortunately many resources have now been diverted because of the earthquake and the future of the AUGE project is uncertain.
COLOMBIANuby Garcia Rodriguez
Nuby Garcia Rodriguez della Liga Colombiana de Parkinson, founded 15 years ago, explained how the mission of the Association is to improve the Quality of life of PD patients by 4 kinds of interventions:
- education of patients and caregivers through courses and conferences
- legal advice designed to offer useful information on patient rights, as the government does not offer any kind of support
- support groups and social events (birthday and anniversary parties, walks) designed to improve morale
- a broad range of services, including physical rehabilitation, occupational therapy, such as painting, finding a caregiver, and selling drugs. These can be carried out via agreements with pharmaceutical companies
LThe Association has also enlisted the help of the media (TV and radio), which disseminate information about its initiatives.
URUGUAYAna Maria SaraviaThe Asociación Uruguaya de Parkinson was represented by Ana Maria Saravia. Uruguay has about 3 million inhabitants and it is estimated that there are about 4,000 people with PD in the country.
She reported the total lack of any support by the Government, which was not even willing to grant the use of facilities for their meetings. In the end they found a school that lets them use their classrooms for their activities, which include conferences with lecturers from the local university, rehabilitation and relaxation techniques, and educational courses for caregivers. At the moment the Association is fighting to get recognition of the status of handicapped persons for PD patients so that they can apply for a pension. Two important Radio stations have been enlisted to disseminate information about their activities.
PARAGUAYVincente Osuna
Vincente Osuna, of the Foundación Grenppy, explained that this non-profit institution was founded 6 years ago and that its main objective is to disseminate information on Parkinson's disease, as little was known about it when the Institution was founded. He acknowledged the satisfactory healthcare offered in Paraguay. Patients are managed by competent physicians and the existence of clinics throughout the country facilitates the diagnosis of the disease.
ARGENTINASarah Sidoti, Nélida Garretto SSarah Sidoti, President of ACEPAR Asociación Civil Enfermedad de Parkinson pointed out that, although the country does have a system for medical insurance, 45% of the population is not covered. There are no definite epidemiological data (see below); estimates are that, with a population of about 40 million inhabitants, there are about 70.000 PD patients in the country. The Association has recently found a way to get all PD patients covered: the acknowledgement as a form of handicap, which involves the release of a document that enables the subject to have healthcare services, including medications, free of charge.
The Association started in 1997 and actually took on the current status of non-profit legally recognized association in 2002, with 6 chapters in various parts of the country. It offers a broad range of services to its members, including a conference every two years, contacts with neurologists, physiotherapists and psychologists, music therapy, courses for caregivers on various scientific topics, and opportunities to meet and socialize with other patients and their relatives.
Dr Nélida Garretto, together with Prof J Bueri, Director of the Department of Neurology of the University of Buenos Aires, described the project of a National PD register “Parkinson en movimiento”. The objective is to collect epidemiological data on the disease in Argentina, which are currently not available. Moreover, the initiative involves a number of peripheral centres and can be a good educational opportunity for them. To date 370 patients have been included, mostly outside Buenos Aires (81%). Mean age is approx 66 years, mean age at onset is 58.6 years. The proportion of males is slightly higher than that of women (59%). The registry has already provided some interesting observations:
- he diagnosis was made by a neurologist in 64% of cases
- he main anti-parkinson drug used is levodopa (86%), a proportion that does not differ much from that of other national registries, such as that of Toronto (78%)
- less than half of the patients follow a rehabilitation program, although it is recommended
- it was believed that levodopa would be used more frequently in Argentina than in other countries as it is cheaper than dopamine agonists and patients have to contribute to the expense, but the phenomenon is less pronounced than what neurologists thought.
THE GRIGIONI FOUNDATION PROJECTRoberto Cilia
Dr Roberto Cilia, neurologist working for the Grigioni Foundation for Parkinson’s disease showed the first results of a project in PD patients in Africa. The project has both humanitarian and scientific objectives. It consists in the opening of a PD clinic in Ghana, where there are very few neurologists (only 0.03 neurologists for 100,000 inhabitants, who live on average with less that 2$ a day). This situation makes both diagnosis and management of PD very difficult. The scientific part of the project involves genetic studies in the African race and the study of the natural course of PD in patients who are still levodopa-naive after 10 years of disease or more, a kind of patient that is non-existent in developed countries. More information can be found at the web site of the Grigioni Foundation www.parkinson.it
CONCLUSIONISarah Sidoti, Gianni Pezzoli, et al.  There was a general consensus that WPDA has an important role to play in helping local Associations achieve their goals: it is becoming increasingly difficult everywhere to convince governments to offer PD patients adequate healthcare support and recommendations issued by a Worldwide body carry much more weight than recommendations by the local Association. Sarah Sidoti was appointed President.
There was also interest in repeating the African experience in South America. Also the American continent has local indigenous populations that are not of European descent and that live in rural areas where the disease is practically unknown. Mrs Sidoti and prof Bueri know a neurologist in Salta, a town located in the North-east of Argentina who has an interest in such populations and who could be very helpful in setting up the initiative.
More information can be found on WPDA web site: www.wpda.org
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