Like many multiple sclerosis patients, Gustavo San Martin felt alone and terrified after his diagnosis, but his worries were compounded by the fact that he lives in Brazil where there are not as many resources available to patients. So Gustavo put his business administration degree and entrepreneurial experience to work and created Amigos Múltiplos pela Esclerose (Friends with Multiple Sclerosis), the MS association with the largest social media following in Brazil. Managing his own MS as well as a large organization is a lot to take on. San Martin spoke with HealthCentral just how he does it all!
HealthCentral (HC): When were you diagnosed and what inspired you to start Amigos Múltiplos pela Esclerose?
Gustavo San Martin: The suspicion of my diagnosis came in 2010, due to an optic neuritis. I went to an ophthalmologist and the tests directed us to five possible diseases: AIDS, cancer, syphilis, tuberculosis or multiple sclerosis. No one at age 24 is prepared for any of these diagnoses. When I got home and broke the news, my mother asked me if I was going to die. I had no answer for her. I thought, "Yes, but I do not know when, or where or how." Along with my diagnosis came a number of doubts and uncertainties, and everything I found on the internet was demotivating, unfounded and pessimistic. I decided, remembering my mother's question, that no one else would have to go through this moment without quality information, in an accessible and positive way! That is how AME was born: with the desire to inform, group, and create multipliers of knowledge and optimism. After all: #InformationIsTheBestTreatment!
HC: When did you start your organization, AME, and what does it do for patients in Brazil?
San Martin: The AME began in 2012, but in April 2013 it received the certification of a patient society. Since then a lot has changed, but our desire to inform as many people continues to motivate our days. I started this project alone, and for two years I continued working alone, until the first collaborator came, the second, third ... Today we are 17 people working exclusively on this project, another 41 bloggers producing content, and approximately 12 health professionals in our Scientific Council.
We started with the pillar of awareness, but soon we saw the importance of advocacy. We understood that this awareness relationship moved our advocacy actions and we began to produce content focused on quality of life, such as the "Quality of Life" channel and the "Pedale por una Causa," currently the largest non-competitive cycling event in Latin America with more than 1,800 participants in the last edition. We began to play an important role in public policies for multiple sclerosis and, due to our work, for other rare and chronic diseases, the fourth pillar of work emerged: social responsibility.
We realized that the problems faced by patient associations in Brazil are very similar, often the same: lack of medicine (which is distributed free of charge by the government), lack of infrastructure to perform exams, lack of specialized doctors, etc. Understanding that it was important to help other NGOs to improve their structure and professionalize their activities in order to better serve their target audience, we launched the Health Actors Forum in 2016. Since then, this forum, which covers topics such as communication, advocacy, fundraising, clinical research, and relationship with the press has trained more than 400 managers from other health organizations, from the most varied pathologies. This leading role in the industry has led us to seek to promote a better dialogue with the pharmaceutical industry, government and medical societies, creating transparent and beneficial working standards for all parties involved.
In the last two years, the Forum Actors of Health, the originator of this sector work, was recognized by the Spanish Chamber of Commerce in Brazil as one of the sustainable initiatives of society, awarding the seal of social responsibility to AME, the organizer of the event. Recently, given the whole context, the AME became part of the National Health Council, main access to the government, but represented by civil society. Still in alignment with our pillars of action, the AME performs the Multiple Sclerosis Observatory. In it, AME analyzes public data, crosses with information obtained from the Ministry of Health and the Secretariats of Health of the main Brazilian states and monitors the situation of the distribution of medicines in the country. Recently the Federal Public Prosecutor indicted the Ministry of Health using our data to impose a fine per day of delay, which minimizes the problem in the main regions of the country.
We continue to work for the patient, his friends and family, but also for society in general. Hand in hand with the other associations active in Brazil, we are transforming the Third Sector and the reality of the impact of networking in the associations of patients of the most varied diseases.
HC: How do you manage your MS and be the powerhouse behind Amigos Múltiplos pela Esclerose?
San Martin: That is my main challenge today! I don’t believe that anyone has all the qualities necessary to be the best at this job. Therefore, in order to improve my relationship with my Multiple Sclerosis, I look for ways to identify and bring in the best professionals in the market. In this way, sharing tasks with super competent people in their areas, I can devote more time to my health, but this is a very thin line. It takes a lot of work to create and sustain this structure!
HC: You've won a few awards in the last few years with AME. Which one is the most meaningful?
San Martin: The first prize we’ll never forget, and that was the WEGO Health Awards - Best in Show (Facebook). It was important, and will continue being important, because it crowned a work done with much affection. In our sector, in the context of Latin America, where patient associations need to prove their legitimacy and transparency every day, prizes, the more the better, are most welcome! In this way, and considering what my stakeholders value more, the Best NGO's (Non-governmental Agency) 2018 award is very special, since it recognizes AME as one of the 100 best NGOs in Brazil, taking into account all sectors, not just health! Our work with this specific recognition suffers much less resistance and more credibility in Brazil.
HC: What are you plans for AME and your personal advocacy?
San Martin: AME is only five years old, almost six. Much has to be done, considering the whole range of health work in Brazil. In this way, I believe that AME and our new project, called CDD - Chronicles of the Day, with a focus on chronic diseases, but with the same methodology of work as AME, will have a lot of work to do. Creating standards, regulating the work of patient associations and continuing to create value and generating quality of life for our target audience will always be a priority for us. We will always have to learn from changes in political, economic and social contexts. I see AME as something more than an association. I see AME as a vehicle of communication, the voice of the patient! This voice, coupled with a good vehicle, can change the world! Therefore, our plans are, more and more, to empower patients, friends and family. Personally, I see myself representing my country, our challenges and problems. I see myself representing a South American continent, so different and unique in its weaknesses and challenges. For this, my focus should be on current projects so that I can then be a health advocate, representing less developed countries in global forums and health organizations.
Learn more about Gustavo and AME here:
Amigos Múltiplos pela Esclerose