We meet Acary Souza Bulle Oliveira and find out more about his work in Brazil as an affiliated professor in neurology.
Affiliation: UNIFESP – Federal University of São Paulo, Brazil
Position: Affiliated Professor in Neurology, Responsible for Neuromuscular Division
What education and training did you have to arrive at your current position?
When I finished my medical residency program in Neurology in 1984, I was in the right place, at the right time and with the right people to start another challenge – Postgraduate studies in neuromuscular diseases.
The chosen theme? Congenital Muscular Dystrophy. Although considered a rare disease, there was clear demand for investigation.
After the Masters, I completed a doctorate in Duchenne muscular dystrophy, studying manifesting carriers. We developed a fruitful partnership with Columbia University, through the godfather of those passionate about neuromuscular diseases in Brazil: Professor Salvatore DiMauro.
After completing the PhD, I only had one place in mind: Columbia University.
To expand my studies, I decided to study nerves and I was welcomed at the Division of Neuropathology at Presbyterian Hospital – Columbia University, in New York, USA, by Professor Arthur Hays, a fantastic neuropathologist.
Upon returning to Brazil in 1992, I was fortunate enough to create a specific sector for the study of neuromuscular diseases, which allowed me to have intense contact nationally and internationally.
What led you to follow a career in the field of myology in particular?
I saw great potential in the sector. The main focus of action became the interaction with other university departments, the study of mitochondria and multidisciplinary care.
The lack of specific medication for different diseases was not an obstacle. I found new solutions at the different International Congresses on Neuromuscular Diseases and World Muscle Society congresses, and from the patient associations that began to be created in Brazil.
The motivation was no longer just to diagnose and understand diseases, but to apply the knowledge to those who needed it.
What is your current research/clinical interest in myology?
At the moment, specifically relating to skeletal muscle, we are incorporating imaging, ultrasound and magnetic resonance imaging studies in different myopathies.
I am interested in these areas of research:
• Mitochondrial diseases: study of mitochondrial deletions in the aging process;
• Duchenne muscular dystrophy: oligonucleotide therapy.
• Integrative and Complementary Practices (Transdimensional Health, Transdisciplinary Education)
Why are you passionate about developing a neuromuscular center in Brazil?
Brazil is the largest country in both South America and Latin America. This unique environmental heritage and rich culture and history makes Brazil the subject of significant global interest.
Technological research in Brazil is largely carried out in public universities and research institutes, with the majority of funding for basic research coming from various government agencies.
My educational and medical training was entirely subsidized by the government.
The Brazilian public health system, the Unified Health (Sistema Único de Saúde – SUS), is managed and provided by all levels of government, being the largest system of this type in the world. Public health services are universal and offered to all citizens of the country for free.
I work in an entirely public institution, with economic difficulties. These difficulties are resolved with the help of colleagues from other institutions active in the area and patient associations, which have strengthened in recent years with the policy on rare diseases.
What is the nature of work you are involved in Brazil?
Firstly, I work to support to patients with different forms of neuromuscular diseases.
I am actively involved in research and education in the fields of myology.
I support various patient associations and I participate in government programmes around clinical protocol and therapeutic guidelines with the Ministry of Health in Brazil
I also like to attend meetings, symposia, and congresses internationally.
What are the regional challenges from the point of view of local doctors in the field?
Due to the territorial extension of Brazil and its geographic and social complexity, there are few services specialized in neuromuscular diseases and with adequate laboratories for appropriate analysis.
Brazil is isolated in a linguistic form. While other countries in South and Central America speak Spanish, in Brazil only Portuguese is spoken and English is not often used.
Science in Brazil does not receive much government support. The products in the health area are practically all imported, making research very expensive.
We are also seeing lower salaries for academics and a decrease in vacancies for professors in public universities.
How does your work help patients in this region?
The Neuromuscular Diseases Research Sector has a particularity that greatly facilitates the relationship with patients. It is located in a house, allowing greater ease of patient access.
Due to the incorporation of care in a multidisciplinary way and the incorporation of Integrative and Complementary Practices, in addition to the easier relationship with disease associations, the patient has become not only a patient, but also an active member in the investigation and treatment process.
Thus, the sector has become a meeting place for ideas and educational and public actions.
Meetings and training courses have become routine, being expanded in a virtual form (online), especially during the COVID-19 Pandemic (SARS-CoV-2), during the national decree of quarantine and social distance.
What do you love most about working in Brazil?
I had a great opportunity to stay at Columbia University. However, for family reasons, I decided to return to Brazil.
Again, luck smiled on me. A service was formed, enabling me to offer assistance, teaching, research and affective involvement with patients and patient associations.
Working in the federal public service, I also had the opportunity to represent the university in various academic forums and to carry out guidelines in therapeutic practices.
I feel very useful, accomplished.
How do you see networking as a way to empower myologists?
The COVID-19 pandemic has brought several problems for humanity. However, it brought communication and greater connectivity between people of different cultures.
I have no doubt that connectivity and networking are the best ways to develop ideas, projects and incorporate innovations.
How can being part of the WMS community encourage you and help your work?
In medical practice, we always have doubts. Living in a non-English speaking country, information takes a while to arrive. I have been finding answers from WMS since 1996.
Unforgettable congresses? Neuromuscular congress at Los Angeles, California, USA, 1986, with the Jerry Lewis participation.
What inspires you to continue working in Brazil?
I had the opportunity to discover what I like, work with who I like, the way I like it and I have no doubt that I am still useful to Brazilian society.
Although not measured, I have no doubt that I am developing work with an almost perfect balance between being a scientist (the important thing is to diagnose) and being a therapist (the important thing is to cure).
I have no doubt that I am almost paying my debt to the Brazilian people and government.
I could work in another country, maybe, but not forever.
After all, I don't like coffee that isn't from the farm.