Cristina Pimenta, the executive director of the Brazilian Interdisciplinary AIDS Association [ABIA], discusses the role that nongovernmental organizations played in Brazil's early responses to the AIDS crisis and address the challenges currently facing the country's HIV programs.
The NewsHour Health Unit is funded by a grant from The Henry J. Kaiser Family Foundation.
SUSAN DENTZER: Tell me about ABIA. What is it? What is its role?
CRISTINA PIMENTA: ABIA is an NGO [nongovernmental organization] which acts nationally in Brazil. It was founded in 1986. One of the first NGOs that acted on the rights of people living with HIV/AIDS on advocacy, and monitoring of public policies from the beginning of the epidemic.
It was initiated right after the redemocratization process in Brazil, after the dictatorship, so some of the leaders that worked at ABIA then were people that were coming from the social movement for the redemocratization of the country, and also other leaders of the gay movement and of the women's movement. ...[W]e started working... for the rights of people even with HIV not to lose their jobs, and then the fight for treatment and health services in the country.
|The role of nongovernmental organizations|
SUSAN DENTZER: Were the nongovernmental organizations initially the gadfly of the government? Were they the enemy of the government, if you will, in the early days?
CRISTINA PIMENTA: Not the enemy in the sense that they were talking about different things, or they had different objectives. They always had the same objective. The public health movement in Brazil has always been very socially oriented. The sanitary movement has always been very socially oriented. But they didn't agree in how fast these responses or these programs had to be implemented, so the social movement was saying that people were dying, and the population was becoming more and more infected without information, without access to information, and conditions for prevention such as condoms.
So this was very important because we would come out and say exactly what the needs were, and the problems with discrimination of people living with HIV, problems with discrimination of sexual diversity, and sexual orientation, and that these issues came up, and government was able to work on these issues as far as legislation was concerned.
So from early on in the epidemic, from the late eighties, early nineties, there were a lot of norms and legislation that was produced to protect people. So, for example, the Ministry of Education, the Ministry of Health came up with legislation saying that you couldn't discriminate or test students, or professors, or teachers for them to have jobs. You couldn't test them for HIV, you couldn't discriminate them if they were HIV positive. And then these were generalized into other areas of work.
SUSAN DENTZER: What made the government wake up and begin to partner with NGOs as opposed to not?
CRISTINA PIMENTA: Well, I think that government saw NGOs as allies, as having complementary actions because especially in the beginning of the epidemics that you were identifying, segments of the population that were under greater risk of infection, it's very difficult for government officials to reach these people. You're talking about either drug users, or marginalized population sex workers. And so it was easier to capacitate NGO professionals and staff to reach out to this population, for them to work with the population and be able to address the issues with appropriate language, with the proper material, develop appropriate information and educational materials, and also support the development of national campaigns on TV.
For example, the government did a lot, and Brazil has done a lot as far as national TV campaigns promoting condom use, promoting safe sex practices, and also with campaigns for nondiscrimination and reducing the stigma of HIV positive people, but these were campaigns that were discussed and talked about with a civil society, with nongovernmental representatives.
|NGOs monitoring social services|
SUSAN DENTZER: We've heard the phrase "social control" a great deal here. What does that mean in the Brazilian context?
CRISTINA PIMENTA: Social control is a term that we [use to] refer to the monitoring of public policies, and of public social policies in the case of HIV/AIDS, the monitoring of public health policies. So what happens is that through the non-government organizations and the people that use the health services, they might go for service, or they might not receive appropriate service, or maybe a medication is not available when they go for that, so they call or they come in and they tell you they're not being tended to.
So then the social movement goes to the government and through different channels -- either a phone call, or an e-mail, or the media -- tries to tell them that either the municipality or the state level government, or the federal government, if that's the level that you have to go to -- and tell them that the service that is supposed to be in place and is supposed to be provided for the population is not happening.
SUSAN DENTZER: Is another word for this accountability?
CRISTINA PIMENTA: Yes. For example, in the beginning of the epidemic, since one of the major channels of transmission was blood transfusion because there was no blood control in the early eighties. We had private blood banks.
So one of the first social control for the social movement was for blood control. So we went out into the streets and made the government aware that this was one of the major things that they should be doing. And by the mid-, late-eighties, blood control wasn't a problem anymore in the country.
And then it was for the treatment. At that time Brazil didn't produce any AZT, for example, so they had to import, so it was very difficult. And then they started producing AZT, and then there was universal distribution of AZT for patients.
So once you move into the epidemic and you gain services and you gain benefits you move a little bit more. And the social movement has really been productive and been important for the country because it has helped the government to see the needs, and once these policies are into place and the programs are being implemented, they also upgrade the whole system, the whole public health system. They have told us a lot of times why Brazil is a poor country, should go into ARV [anti-retroviral] treatments, you know, paying for very expensive drugs for the population.
To begin with, it's in the constitution. The right of the person to have health services, and it's the duty of the government to provide for that. But on the other hand, it's like why should you not go into treatment? If you're doing prevention, and you're identifying people that are in need of treatment, why not go for treatment. It's a way of upgrading the whole health services as opposed to lowering of accommodating with low-level treatment service. It's a way of upgrading it.
|How the world should view Brazil's HIV programs|
SUSAN DENTZER: From your perspective what should the world understand most about how Brazil has attacked HIV/AIDS.
CRISTINA PIMENTA: Well, I think that the whole issue of looking at the person or the patient or the client in need as a whole person, as having fundamental rights, as this being part of a human rights movement, a citizenship. Being part of a citizenship movement is what made a difference, I think, in the Brazilian response. The combination, of course, of actions from the government, the government commitment, and putting resources into a national response, and providing for infrastructure, and allowing for the social movement to be part of this response, I think, is the big difference.
...[A] poor country already has very difficult problems with violence, with exclusion of people from jobs, from appropriate or a quality level of life. So why should you increase that? You should look into ways of improving and making programs integrated from different sectors.
We also had a very good response from the private sector in Brazil, from the business sector as well that also helped to expand and to scale up the actions in Brazil.
SUSAN DENTZER: What is the most serious challenge facing Brazil's fight against HIV/AIDS?
CRISTINA PIMENTA: I think the most serious fight is maintaining the level of prevention work that we have today because as far as the treatment is concerned, of course you need resources, you need funding for that. But it's easier to make sure that you have appropriate funding for treatment because these are drugs that you purchase, and you make available through the health system, but prevention has to be continuous.
We have young people that are beginning their sexual lives every day. We have people that unfortunately are engaging in drug use, and, you know, drug abuse, so that will also affect HIV transmission. So prevention, I think, is the biggest challenge.
But we also have other challenges related to people that live with HIV. We have quite a good number of preadolescents and adolescents today that were born with HIV and that today are initiating their sexual lives, and reproductive lives, and we have to look into that as well.
So there are several challenges and several things that we have to work on, and continue working on. But prevention, I think, is the main issue of maintaining.
SUSAN DENTZER: You've spent a good deal of time in the United States. What do you see as the biggest differences in the way people with AIDS or HIV are treated here versus in the United States?
CRISTINA PIMENTA: Well, I think comparing the approach for public health as a whole, I think that one of the biggest differences, that the tendency in Brazil for a public health official or professional to attend to or to look at the patient or the client is that they look at the person as a full person, as compared to the U.S. it's more like the professional looks at the patient more as a consumer.
The rights of the patient in the U.S. are more related to the rights of a consumer because they are consuming services, they're paying for services, or someone is paying for the services, and for those medications, and for that treatment, and here it's more the person is looked as having a right for services, and as a human right and not as a consumer right. I think that's a difference...
|Is Brazil's HIV program a model?|
SUSAN DENTZER: Is Brazil a model for other countries now fighting the AIDS pandemic?
CRISTINA PIMENTA: ...I like to refer not to the Brazilian model, but I like to refer to it as the Brazilian response because I think it's a combination of actions, policies and resources that were allocated, and not a model because a model is something that you can take somewhere and copy it, and you can't copy a response. You can learn from it.
Of course, there are lessons to be learned. The commitment of the government, the combination of actions and the partnership between the civil movement and the non-government organizations with government actions and with the business sector. But regardless where you take the response, and to learn from it, and to try to implement some strategies or approaches that were taken here, you have to adapt that.
You have to take into the consideration the political moment the country is in, the social context especially, the cultural context the country is -- regardless if you take experiences to African countries, or if you take it to Canada, or to the U.S., or to a European country, to Russia or anywhere, you can learn. There's things that, of course, you can look at and see what you had good results, what were the prevention strategies that worked? How did they work with the population in Brazil that made the difference? The participation of people that live with HIV, and elaborating responses is very important.
So there are lessons to be learned, but I wouldn't say it's a model because you can't really copy it. You can, you know, adapt, and you can learn from it.
SUSAN DENTZER: Finally, if I were to hand you a magic wand tomorrow and said you have the power to change one thing about this response, the most important thing, what would you do? Is it more money?
CRISTINA PIMENTA: I would scale up and work on the quality of services now. We have reached a level of implementation in Brazil for infrastructure, for services. Improve staffing of public health units. That would be a basic issue.
SUSAN DENTZER: Does that take more money?
CRISTINA PIMENTA: It takes more money, but it takes other -- we have limitations on public health spending as far as personnel is concerned, for example, by legislation. It's a norm. So sometimes even if you do have the money, you can't hire people because in a municipality or a state level because you have reached the percentage of expenditures with personnel.
So there are different things that you have to look at in different states and different municipalities, but resources -- human resources and financial resources are always welcome.