Betinho, a Brazilian Activist and the HIV Cure
"It happened suddenly, like how everything happens”. These were the last words of an article titled “The Day of the Cure” published in 1992 in a Brazilian newspaper, Jornal do Brasil (1). The article narrates how Herbert de Souza — a well-known Brazilian sociologist and activist, nicknamed Betinho — imagines the day when the cure for AIDS is announced.
Now, almost 20 years since the publication of this article (and 14 years after Betinho’s passing on August 9, 1997) we can repeat his words: it happened suddenly, like how everything happens. As I will address later, this event happened in Rome, Italy, during the "6th Conference on HIV Pathogenesis, Treatment and Prevention”, organized by the International AIDS Society (IAS) from July 17-20, 2011.
With this short article (2)— which highlights the scientific community’s commitment to finding the cure for HIV and Betinho’s courage to speak about the cure for AIDS in 1992 —, I would also like to call attention to the important of the involvement of civil society in the discussion, development and implementation of different strategies required to confront the HIV/AIDS epidemic, including the search for a cure.
A few words about Betinho
Born on November 3, 1935, in the small town of Bocaiúva, Minas Gerais state, Betinho was the third of eight children and he spent part of his adolescence in seclusion because of a common illness in Brazil in the 1950s — Tuberculosis. Betinho was also hemophiliac as well as two of his brothers.
Betinho participated in the student movement in Brazil. During high school he joined the Young Catholic High-School Students and in college he joined the Young Catholic University Students. In late 1962 when he was at the Faculty of Economic Sciences of the Federal University of Minas Gerais, he was part of the nucleus that founded a political organization called Ação Popular (Popular Action), composed of Catholics determined to build socialism in Brazil. Graduating in sociology in 1962, Betinho was involved with working-class movements and in the struggle for basic political reforms. At the same time, he assumed coordinating and advisory functions in the Ministry of Culture and Education.
In the 1960s and 1970s, for nearly two decades of Betinho’s life, Brazil was governed by a repressive military regime. After the 1964 coup in Brazil, the Popular Action realigned itself with the union movement and other progressive groups and Betinho started to work in the resistance against the military dictatorship. In 1971, when repression was at its most intense, Betinho went into exile. Betinho lived first in Chile, where he taught at the Latin American Faculty of Social Sciences in Santiago and worked as advisor to President Salvador Allende, who was later deposed by the military in 1973. Betinho escaped the Chilean coup by seeking asylum at the Embassy of Panama. In 1974 he went to Canada and then to Mexico. During his exile, Betinho assumed leadership and advisory positions in organizations such as the International Peace Research Association, the UN Food and Agriculture Organization (FAO), and the Latin American Research Unit. He was also a professor in the doctoral program in Economics in the Division of Higher Studies at the National Autonomous University of Mexico.
In the late 1970s, with intensified pressure for political opening in Brazil, his name became a symbol in the campaign for the return of political exiles. In 1979 with political amnesty, Betinho was able to return to Brazil. As the dismantling of the regime was taking place in the early and mid-1980s, many of the former exiles, including Betinho, began to form organizations to address the socioeconomic inequalities affecting the country. A new agenda for issues such as education and health began to take shape, and the prodemocracy movement was, therefore, from the beginning, inextricably linked with activism surrounding health and social issues.
In the early 1980s, he helped to establish the Brazilian Institute of Social and Economic Analyses (IBASE) in Rio de Janeiro. IBASE was the principal place where Betinho worked developing his ideas and actions. Betinho also played a decisive role as a founding member and main negotiator of the National Campaign for Agrarian Reform, pooling together entities of rural workers in search of a solution for the serious issue of land distribution, ownership and use. In 1990, in this struggle for land democratization Betinho organized the movement "Land and Democracy".
In 1985, Betinho learned he had been infected with HIV from one of the blood transfusions he underwent periodically for his hemophilia. Being HIV positive stimulated him to open yet another front of struggle: defending people living with HIV and AIDS.
In 1986, Betinho helped to form the Brazilian Interdisciplinary AIDS Association (ABIA), one of the first and most influential institutions in this area in Brazil and became ABIA’s first president.
In 1992, he took part in the Movement for Ethics in Politics, which culminated in the impeachment, in September of that year, of Brazilian President Fernando Collor de Mello.
In 1997 Betinho contracted hepatitis and had to stop taking the AIDS medications due to their adverse effects. He grew even frailer than before and became increasingly ill. He died, at home, in August 1997.
For more information about Betinho see:
Galvão J. 2009. Betinho: Celebration of a Life in Brazil. In: The Practice of International Health: A Case-based Orientation. Perlman D, & Roy A (Eds.). Oxford: Oxford University Press, p.231-243.
Pandolfi D, Heymann L (Eds.). 2005. Um abraço, Betinho. Rio de Janeiro, Brazil: Garamond.
2011: Towards a HIV Cure
The conference in Rome had many high points, such as the dissemination of studies that prove the relationship between treatment and prevention of HIV, meaning that treatment is also prevention (3). Another, the HPTN52/HIV Prevention Trials Network study, focused on the use of antiretroviral (ARV) therapy in HIV-discordant couples and showed a decrease of 96% of the risk of sexual transmission of HIV (4).
The dissemination of such results is causing many to consider this conference a milestone in terms of new opportunities to combat the HIV/AIDS epidemic (5), especially the use of ARVs and what it means not just to provide treatment for HIV positive people, but also for people who are HIV negative as a means of prevention — in what was called a "renaissance of antiretroviral therapy" (6). In this sense, comparisons are being made between this conference and the "XI International AIDS Conference" which took place in Vancouver, Canada in 1996, where the Highly Active Antiretroviral Therapy (HAART) was announced. But some analysis are also pointing to the challenges in implementing the results of studies, not only in terms of financial resources that are required (because more people would be eligible to receive ARVs), but also other implications (some linked to behavior) of how antiretroviral therapy would be used by healthy people (7).
However the intention of this article — and the connection with Betinho, as I mentioned in the opening paragraph — is to highlight another topic that was discussed during the conference in Rome and that has had a huge impact: the development of a global strategy for the cure of HIV.
As announced in Rome, the IAS is developing a global scientific campaign called Towards an HIV Cure. This campaign will be launched at the "XIX International AIDS Conference," which will take place in Washington, D.C., USA, in July 2012. The main objective of the campaign is to develop a global consensus and define scientific priorities aimed at a finding a cure for HIV. The international working group created to develop the campaign is being led by Françoise Barré-Sinoussi, the newly elected president of the IAS and renowned French researcher who, in 2008 with Luc Montagnier won the Nobel Prize in Medicine (8). The Nobel was bestowed on the two scientists for their discovery of HIV in 1983.
Reflecting the attention that will be placed on the issue in the coming years, a document titled The Rome Statement for an HIV Cure was launched during the conference (9).This document represents a global call for scientists, people living with HIV/AIDS, activists, donors, and all those committed to the cause of AIDS, to advocate and work with renewed vigor and creativity, to accelerate the arrival of the day when a cure will finally be announced. In an IAS publication, the cure for HIV is defined as (10):
- Functional cure: some HIV genetic material remains in the body, but the patient’s immune defense fully controls any viral rebound, allowing patients to be free of antiretroviral treatment.
- Sterilizing cure: no HIV genetic material can be found in the body; HIV infection is eradicated.
When I saw that presentations about the cure for HIV were part of the conference program, when I saw the determination of scientists like Françoise Barré-Sinoussi when they spoke on the subject, and especially when I read The Rome Statement for an HIV Cure, I immediately was reminded of Betinho’s article "The Day of the Cure", published in 1992. It is interesting to note that when Betinho’s article was published, it attracted criticism because at that time, in the early 1990s, it was unthinkable to speak of a cure when not even one effective treatment was available.
The Day of the Cure
It was an ordinary morning like any other, when I opened the newspaper and read the headline: The Cure for AIDS is Found! At first I shifted in bed as if the floor had been moved and my room was in a different place.
I stood still for some time without knowing what should be the first act of a person sentenced to live again. The first thing was to be certain. I called my doctor. It was really President Bush himself giving statements on American TV announcing the truth: 10 patients with advanced AIDS had taken the CD2 medication and shown no signs or symptoms of the virus in their systems. An efficient virucidal had been discovered.
The other news followed the same course. The CD2 laboratory’s shares on the New York Stock Exchange jumped to a new high. In France, the Pasteur Institute said they observed a similar occurrence of the vagaries of science and that there was also CD2 in the pipeline to be announced.
I called my psychiatrist and relayed the news about the cure for AIDS and decided I would only confront my happiness in our future sessions. After all, I had prepared myself so thoroughly for death that life was now a problem.
At my side, Mary was still asleep and did not know that our lives had changed. While we’ve been married for 21 years, the recent years had been a time of tension from every flu, skin rash, or unexplained fever. The love that we had known for so long and that had been interrupted by fear of infection, of carelessness, the unthinkable, was now within the reach of life as if a miracle, despite my 56 years, as the phrase says from a common São Paulo newspaper.
I thought to myself, condoms never again? Maria slept, still unaware of the news. She now could be the widow of other more mundane causes, most common, but normal. She would no longer be a widow of AIDS. Major advances. There were my children to alert. They would no longer be AIDS orphans, their father now had something of an immortal, or rather he could die as all other mortals.
The TV continued to show incredible scenes from New York and my phone had already started ringing. After all, for nearly 10 years I had been the ideal AIDS interviewee: I was a hemophiliac, HIV positive and a sociologist. I could play all three roles in one time and in one person. I was the AIDS trinity! Everyone was wondering how I felt, what I'd do first, my emotions, my reactions to life and to normality. Imagine the questions: how do you feel now that you’re normal again? What will you do in your life now? What really changed in your life? What did you learn about AIDS? Will you still be angry at the government? I began to think that like Chico Buarque [a very well know Brazilian songwriter and singer], I'd give my first interview to Jô Soares [a very well-known Brazilian television host, comedian and writer]. After all, speak of life drinking beer!
Still in bed, where I like to spend my mornings, I was missing Henfil and Chico [Betinho’s brothers, both hemophiliac and both contracted HIV via blood transfusion. They passed way in 1988], and amid the joy that had infected me, I started cried. Why did they have to have suffered much and died so ahead of their time? So much suffering and so much useless pain that words cannot describe. I felt the stare of those who had already passed. The terrible mask of those who had died from the plague of the century. Abandonment without remedy. The fatality that not even death could bury?
Why had they just died if they were my brothers, who phoned with the habit of those who believed they could do this for centuries in a row?
Suddenly, there’s no one on the other line. Numbers scratched on a schedule with no cure. I still had the memory of the burial of my Chico at Henfil’s burial telling me between astonishment and humor: today is Henfil, tomorrow will be me and you will go in three years ... well, let's say five!
And here I am now, four years later, almost five, reading the news, and they are all dead before their time. There is no cure for death of my brothers, who are many.
Suddenly I realize that there is actually a cure for AIDS. It's time to get up, answer calls, meet with the ABIA staff, celebrate with IBASE staff, and open a bottle of champagne or beer. I need to call someone to find out where was the medication, how to buy it, the price, and its expected date of arrival. When would it be available and at what price? And who could buy it?
Something more important, however, occurred in parallel. Now that was a cure, friends who I never suspected called me to say that they were also HIV positive. Now that was a cure, others gave me best wishes over the telephone and told me that they were going directly to get tested. Many others told me that their sex lives were a mess, but now it was worth being careful, because now there was a cure. Some others called me to say that they would get treatment and think about life, because now there was a cure. And finally, others told me that they could now reveal their HIV status to the press to serve as examples to others, now that there was a cure.
Suddenly I realized that everything had changed because the announcement of a cure. I realized that the idea of inevitable death paralyzes you. I realized that the idea of life motivates you ... even if death is eventually inevitable, as we all know. Waking up knowing that you will live allows life to make sense again and changes how you live your life. Waking up knowing that you will die takes away any meaning of life. The idea of death instead of life is death itself instilled.
Suddenly I realized that the cure for AIDS had always existed as a possibility, even before it existed as an announced discovery, and that its name was life.
It happened suddenly, like how everything happens.
Souza, H. 1992. O dia da cura. Jornal do Brasil, January 30. The original article was reprinted in Dossiê Vacinas, N°1, April 1992. Available at:
This article was originally published in Portuguese and translated into English by Kevin Penzien.
We are not yet at the point of waking up to read the headlines: "The Cure for AIDS is Found!" as Betinho wrote in 1992. But by seeing the scientists who are involved, how seriously they are treating the issue and how the topic is increasingly on the agenda of the global health community, it is possible to think with cautious optimism that as we enter the third decade of the HIV/AIDS epidemic with its repercussions in Brazil (11) and globally (12) that we might be closer and closer to the discovery of a cure. Concrete steps have been taken in this direction. For example: in 2010, the session at the "XVIII International AIDS Conference" (13); in 2011, The Rome Statement for an HIV Cure and the international working group that was created to develop the campaign for a cure for HIV; and in 2012, the launching of this campaign at the “XIX International AIDS Conference”.
As stressed by The Rome Statement for an HIV Cure, now more than ever is the moment to seriously search for a cure. At times like these we should recognize the visionary force of not only scientists but also of members of civil society movement, like Betinho, and take a moment to reflect and reinterpret the words of wisdom contained in his article published in 1992: that a cure for AIDS has to first exist as a possibility, before it is able to “exist as an announced discovery.” Surely we are already living this possibility. Hopefully the "XIX International AIDS Conference" in 2012, brings us a little closer to the announcement of the arrival of a cure, as envisioned by Betinho and desired by us all.
Jane Galvão holds a Ph.D. in Public Health and M.A. in Social Anthropology, and she has been actively involved in HIV/AIDS programs in her native Brazil for a number of years: she worked with civil society organizations — she was ABIA’s Executive Director from 1993 to 1999 —, as well as with the National AIDS Program at the Brazilian Ministry of Health. She is currently working with UNITAID, in Geneva, with the HIV/AIDS Portfolio.`
Jane Galvão is a staff member of UNITAID/World Health Organization. The author alone is responsible for the views expressed in this publication and they do not necessarily represent the decisions or policies of UNITAID/World Health Organization.
This article is dedicated to Betinho, Ronaldo Mussauer de Lima and to all friends and colleagues that I lost to AIDS. It is also dedicated to the Brazilian Interdisciplinary Association (ABIA) for its contribution to the fight against AIDS.
1-Souza, H. 1992. O dia da cura. Jornal do Brasil, January 30. The article was reprinted in Dossiê Vacinas, N°1, April 1992. Available at: http://www.giv.org.br/projetos/vacinas/cdrom/boletins/boletim_dossie01.htm
2-This article was originally published in Portuguese [Galvão, J. 2011. Betinho e a cura da AIDS. Análises ABIA, Ano 1, n◦1]. This English translation — by Kevin Penzien — is an extended version of the original
3-See the Lancet, available at: http://www.iasociety.org/Web/WebContent/File/Lancet_160711_complete_lores_2.pdf
4-For a more detailed analysis of this study see the article “Prevention of HIV-1 Infection with Early Antiretroviral Therapy”, published in The New England Journal of Medicine, and available online at: http://www.nejm.org/doi/full/10.1056/NEJMoa1105243.
5-For an general overview of new technologies for HIV prevention and the latest developments on microbicides, vaccines and female condom, visit: http://www.hivresourcetracking.org/
6-VAX, vol 9, N° 4, July 2011. Available at: http://www.iavireport.org/SiteCollectionDocuments/IAVI_VAX_JULY_2011_ENG.pdf
7-For more information about some of the challenges in implementing the results of studies see: http://blog4globalhealth.wordpress.com/2011/07/26/treatment-as-prevention-implementation-challenges-more-and-earlier-hiv-testing/. Hayden, E.C. 2011. HIV drug-prevention strategy carries risks. Nature, 476: 260-261. Available at: http://www.nature.com/news/2011/110816/pdf/476260a.pdf
8-Pincock, S. 2008. Françoise Barré-Sinoussi: shares Nobel Prize for discovery of HIV. Lancet, 372: 1377.
9-The Declaration is available to be signed online at: http://www.iasociety.org/Default.aspx?pageId=583
10-IAS. 2011. Newsletter. Available at: http://www.iasociety.org/Web/WebContent/File/Newsletters/2011_07_IAS_Newsletter.pdf
11-For an analysis of three decades of the HIV/AIDS epidemic in Brazil see: Cadernos de Saúde Pública 27, Sup. 1, 2011.
12-For an analysis of three decades of the global HIV/AIDS epidemic see:
De Cock, K., Jaffe, H.W., & Curran, J.W. 2011. Reflections on 30 years of AIDS. Emerging Infectious Diseases, volume 17, N° 6: 1044-1048. Available at: http://wwwnc.cdc.gov/eid/article/17/6/10-0184_article.htm. UNAIDS. 2011. AIDS at 30: Nations at the crossroad. Available at: http://www.unaids.org/unaids_resources/aidsat30/aids-at-30.pdf
13-This was one of the themes that was part of the opening session of the 2010 event — with a talk by Sharon Lewin entitled "State of the Epidemic: Strategies for a Cure".
Key words: Betinho HIV Cure, HIV cure, HIV cure activism, IAS Rome statement., activists HIV cure, towards an HIV cure