There's so much to be done, and time is of the essence when dealing with HIV. Jairo Pedraza is not one to waste precious time. He works passionately, tirelessly, and globally to turn the tide against the disease. Body Positive was fortunate to get one hour worth of his precious moments to talk with him about the impact of HIV on Latin American communities.
Can you share some of your personal history? How did you get involved in the fight against AIDS?
Jairo Pedraza: First, I would like to clarify the different roles that I play. I was born in Colombia, and I've lived in the United States for over 14 years. I've been involved in the fight against the AIDS epidemic since the middle of 1985. As an immigrant, I saw the need for involvement through activism. I joined ACT UP in the late '80s, and from there I began to see the need for international work, especially from the grassroots perspective where we [ACT UP] saw a lot of movement between our countries and North America. If we were well organized in North America, it was clear that there was a lot of work that needed to be done back in our countries. We were interested in how those of us in the United States could play an active role in Latin America, how through our activities in the U.S. we could have a positive impact on HIV/AIDS in Latin American countries. I became involved in the Latino Caucus of ACT UP, a caucus group within the larger group of ACT UP. We did much work here in New York City, but also we moved to form a special caucus within the Latino caucus that we called ACT UP Americas.
ACT UP Americas was created with the intention of doing international work. We created a treatment newsletter called ACT UP Boletin that is still distributed today in Latin America. It focuses on current treatment issues. We also work with many gay groups in Latin America and help them to get some of their civil rights, such as the Comunidad Homosexual Argentina (CHA). We played a very important role in assisting them to get recognition by the jurisdiction powers in Argentina, so now they are a formal organization.
After my involvement began with ACT UP, I began working for Gay Men's Health Crisis (GMHC) in the Legal Department on the Immigrant Project. Through my work there, I got more involved with immigration issues, since the needs of our community were directly affected by immigration policies. Also, I got more involved in the international arena by attending conferences and becoming aware of the different groups formed internationally to deal with HIV/AIDS. I was attending a conference in Amsterdam when I became aware of the Global Network of People Living with HIV and AIDS (GNP), a grassroots network of people living with AIDS.
In 1995, I was elected to become the Northern Regional Representative of GNP's Board of Directors. GNP has several regional representatives. There are five regions as determined by the World Health Organization. At that time, each region had three representatives. When I say North America, I mean the United States and Canada (not including Mexico). Since then, I have taken a special interest in the lack of access to treatment in developing countries.
We now see the disparities between the North and the South, especially as it relates to health care and access. It reinforces the fact that people in the North have access to life while people in the South do not. In early 1997, I was appointed to be an alternate for the North American region on the Board of Directors of the United Nations AIDS Program (UNAIDS). In 1998, I was appointed as the North American Region board member when the alternate, who was Canadian, resigned. I also serve as Community Co-Chair of the NY Ryan White Title I HIV Planning Council.
As a person living with AIDS, I feel that the Latin American community certainly has had an impact here in the local NYC area, but I think that we have a lot to contribute to the international arena.
BP: Just to make sure that all our readers have the same understanding, could you please identify what countries constitute Latin America?
JP: The answer to this question is quite complicated. It's a difficult issue. I commend you for trying to address this and to clarify it for your readers. It's very difficult to address because it's political, geographical, and because how to identify or divide the regions has become part of a health care issue as well. From a political perspective, Latin America could be interpreted as any country below the U.S.A., but I want to focus the definition on my personal perspective, how it has been identified through my work, and hope that I can be clear regarding my interpretation. My perspective is specific to how GNP identifies the regions.
In GNP, Latin America is divided into two separate regions -- the Caribbean and Central and South America. Latin America comprises South America, which is divided into two portions -- the Cono Sur and region Andiana. Cono Sur is comprised of the countries in the south: Argentina, Chile, and Bolivia, and there's the region Andiana: Colombia, Ecuador, Peru and Venezuela. Then, we have Central America, which also includes Mexico. Mexico and Puerto Rico are a big dilemma wherever they fall due to their relationship to the U.S.A.
Many times this question of what constitutes Latin America has been posed to individuals within their respective countries. To a large extent, Mexico has decided to be part of Latin America while Puerto Rico favors being a part of the Caribbean. Again, these issues are very delicate, very political. For instance, there is a U.S.A. government health-related initiative called the Tri-National Initiative, where Mexico is part of the North American region.
BP: A couple of things have come to mind based on some of the content of your personal history. You mentioned having worked for GMHC's Legal Department, and this brings to mind a Latina, named Ilka Tanya Payan, whom I was fortunate to have had an opportunity to work with at GMHC when I was on staff there from 1988 to 1992. She worked in the Legal Department. She was also a well-known actress in Latin American communities. I recall that Ilka publicly disclosed that she was HIV-positive, and it was a major step for her to do so as a woman, a Latina, and professionally as an actress. Is disclosure still a difficult issue for Latinas?
JP: First of all, you bring up a very moving part of my life. Ilka was my mentor. In fact, I cannot describe what Ilka meant to me. She is still very close to me in a variety of aspects. Ilka came out because of the reasons that you mentioned, but also, as a Dominican person, she wanted her coming out to make a statement that would reflect back to the issues being encountered in the Dominican Republic. She was trying to increase awareness about the fact that HIV knows no borders, that it affects all communities no matter where you come from. I think her coming out had an instrumental impact on communities here in the New York area, in the U.S., and back in the Dominican Republic.
Very few people know that after she came out here in the New York City area, she went back to the Dominican Republic and appeared on a national television program on which she told her story. She served as a powerful instrument to raise AIDS consciousness.
She was also invited by the United Nations to participate in a World AIDS Day with Liza Minnelli. Even today, she is very much missed. Also, she meant a lot to many immigrants whom she served. I don't know if many people are aware of this, but she was influential in using immigration regulations to provide many people living with AIDS access to treatment with voluntary departure. We're talking about early 1993. She was an early pioneer in advocating for undocumented people with HIV.
BP: The other point that came to mind concerns your special interest in the lack of treatment in developing countries. As you know, people around the world who are affected by HIV are mourning the deaths of Jonathan Mann, the founding director of the now defunct Global Programme on AIDS at the World Health Organization, and his wife, Mary Lou Clements-Mann, who was a respected HIV Vaccine researcher. [Editor's note: They died in the SwissAir 111 crash that on September 2, 1998]. Dr. Mann was a pioneer in believing that HIV prevention and treatment are human rights issues because the people who are primarily affected by HIV in the world just happen to be the people who are marginalized, discriminated against, who are stigmatized by the hierarchal "Third World" definition. At the 10th World AIDS Conference held in Vancouver, he raised a concern that the new protease inhibitors that were being highlighted at the conference were going to drive a wedge between the "haves and the have nots" in the world. Access to treatments is a human rights issue. Unfortunately, it looks like his forecast is correct.
JP: Definitely. The loss of Dr. Mann is a big loss for all of us, and especially those of us who are living with HIV and AIDS. It is a heartfelt loss that we feel very deeply, and I can assure you that if you speak to anyone in the HIV community where human rights have been continually violated, you will hear that he was a leader in standing up for our rights. His forecast (as you call it) was especially clear that as more developments occur in treatment, the gap between the haves and have nots will widen. We're talking about taking protease inhibitors with many other different drugs and the price of the drugs keeps increasing, so it's an economic issue that widens the gap. As each day passes, his diagnosis concerning the disparity between the North and the South gets stronger. It was ironic that in Geneva [the 12th World AIDS Conference in Geneva, Switzerland] the theme was "Bridging the Gap," but in reality, the gap is widening.
BP: Which Latin American country is being hit the hardest by HIV infections, and what factors contribute to its inability to implement successful prevention measures?
JP: It's difficult to say which country is hit the hardest because Latin America is unique with great differences between the different countries. If we look at cross-cutting issues, we can say that funding plays an important issue in prevention and access to treatments. Another one is big denial by communities that HIV affects them, and also the lack of government response to the epidemic at an early stage. Government response has been very minimal throughout the years, although lately it has improved. Another one is the church, which plays an important role in our region. There has been no progressive movement in the church, and this has been detrimental to our region. Then there's the stigmatization of HIV.
Homosexuals in Latin America have been most stigmatized by the epidemic, and this has sent many people underground, which makes prevention efforts much more difficult. In addressing your question, some regions do come to mind -- for instance, Honduras. Honduran women are affected by HIV and AIDS the hardest. In South America, in Argentina, we see a high infection rate among injecting drug users that is not particular to other countries. In some countries, street children are highly affected. Tourism is another issue. Infections get carried back and forth between borders, so this is a big concern. Machismo plays an important role as a prevention barrier, too.
BP: I understand that in some countries, like Colombia, there is a health system similar to Medicaid called Social Security, and that the system does not pay for some basics like viral load tests. I hear that only those people who are well off financially can afford viral load and T-cell count testing. Exactly what is the testing situation? How does the lack of availability impact people living with HIV? Is treatment compromised?
JP: Different countries have different health care systems. Most countries have a basic care system such as Social Security. The only problem with these systems is that not everyone can afford or qualify to participate in them. There are few people that have access to it, so that leaves a big margin of people who are without health care in these countries.
BP: How does a person get access to these systems?
JP: Many times it depends on employment -- if their work provides it. Those people who are not employed either do not have access, or they must meet certain requirements. Farmers, who live outside of the main cities, often are not able to meet the criteria. It's very complicated. I know that there are countries that have reportedly good and improved Social Security systems, like Brazil, Argentina, and Colombia, yet many people remain outside of these systems, specifically in the outer cities.
In regards to the testing issue, basic requirements to test for HIV status are offered widely today, but new developments (and this brings me back to our discussion about the lack of access to protease inhibitors and other new drugs) like testing for viral load and T-cell count to learn if a person has developed resistance, are not widely available. So even if a person has access to drugs like the protease inhibitors, they have no way of monitoring the effect of the drugs on their health. Setting up an infrastructure that includes access to treatment and monitoring is complicated and lacking in many countries.
BP: There is a program in Uganda, Africa called Traditional and Modern Health Practitioners Together Against AIDS (THETA) that combines Western medical treatments with traditional healing treatments (methods that are used by the indigenous health practitioners in the country) in one project [Editor's note: See the article titled "Traditional Healing in a Modern Epidemic."]. Traditional treatments would be things like herbs and spiritualism. Since access to Western treatments are scarce, are people in Latin America using traditional practitioners that prescribe therapies that are indigenous to their cultures?
JP: Yes. Different cultures apply different approaches to treat the manifestations of HIV. Those who have access to certain Western-developed medications will use them, but they will also use certain herbal treatments, use Santeria, do a combination of things. I am sure that in the Caribbean and in Brazil, where Santeria is practiced widely, they will use this resource in conjunction with Western medicine. In our culture, there is always a plant, an herb that we use to treat certain illnesses. In many situations, these are the only resources to which people have access. Therefore, I wouldn't be surprised if certain herbs are being used to treat Pneumocystis Carinii Pneumonia (PCP) or other lung-related ailments. This is a way of life for people who live outside the big cities, for people who live in rural areas. These practices are commonly used throughout Latin America. It is part of our culture to use multiple approaches. Even Latinos here in the local New York City area use several different approaches.
BP: Sometimes I suspect, or even hope, that indigenous practitioners have some secret recipes that they are using to help treat the manifestations of HIV, and perhaps even -- dare I say it -- have cured individuals of the virus. If so, the difficulty here is that shamanic and healing practices are often sacred and must be kept secret out of respect for the spiritual laws. I'm talking about things that have not been scientifically studied and therefore would not be given any credibility or support by Western medicine standards.
JP: It's hard to tell, because, as you said, these things are highly personal or secret, and are not widely accessible for many reasons. Many times, herbal treatments and others that you have mentioned have not been researched. Why? Because there is not much interest from the economic perspective. There aren't major financial gains to be made. These treatments are truly grassrooted. A good point about these practices is that an individual who participates in them is actually exercising his or her faith, own spiritual belief. Sometimes, this is lacking in people regarding their relationship to Western medications. If anything, we have a great deal of distrust toward Western medications. Overall, this faith situation plays an important role in regards to treatment approaches in our communities. Often, when people take Western-developed HIV medications they feel worse when they take them than they felt before. Experiencing side effects can increase and foment distrust. So, there are many reasons why we use different approaches.
BP: Are people from Latin American countries immigrating to countries that have better health care? The U.S. has one of the strictest immigration policies in the world against people with HIV, so it must be challenging to get into the U.S. Of course, when people are desperate they take desperate measures, especially when they are fighting for their lives. Where are people going to try to access quality care?
JP: Access to the U.S. is not just particularly difficult for HIV-positive people. Many countries have restrictions for economic reasons. For example, the U.S.A. practically has its doors open to Argentinians while Dominicans are limited on the amount of visas that can be issued to them. The lack of visas given to certain countries, coupled with HIV travel restrictions, complicates the problem. Even if you're HIV-negative, it's not simple to migrate to the United States. For one thing, you have to demonstrate financial solvency to be approved for a visa to come to the United States. Yet, if you are financially capable, then one might be questioned as to why they want to migrate to the U.S.
Yes, HIV restrictions do play an important role, and impede people from migrating here. There are different ongoing projects within the region that assist one country to another. There are government projects in countries like Chile that will assist other countries that have minimal access. There is also an emphasis on South-to-South cooperation. Beyond official government initiatives there are many grassroots efforts.
BP: What about clinical trials? This has been a controversial issue here in the U.S., particularly as it relates to for whom the trials have been designed, and who is being left out of the research loop. The civil rights issue reared in the past as the people who were being left out of the clinical trials tended to be women and people of color, and often when women were included, they had to be of child-bearing age. Luckily, the situation isn't as grave as it once used to be here. What's the situation in Latin American communities?
JP: Clinical trials could be very controversial. This is another difficult issue. Many of these trials are conducted by Western pharmaceutical companies; therefore, ethics becomes an issue. In recent times, many ethics that are applied in developed countries are not the same when trials are conducted in developing countries. Many activists have questioned these efforts and the ethics of pharmaceutical trials in developing countries. With that said, there are several clinical trials happening, but if we compare them with the amount of trials happening in North America, there are very few. Also, many pharmaceuticals have a monopoly on trials that are conducted in a country, so there is competition among companies in the pharmaceutical industry, and there are also countries that they find more appealing for some reason. I know that for many years countries such as Mexico and Brazil were a high priority, and were appealing to many companies.
Overall, as far as I know, there is not a tangible specific summary of what is happening where. There are several universities that are conducting trials. There are ones in Colombia, Brazil, and Mexico, and Argentina has had several, but the amount of trials are minimal. Also, there have been some vaccine trials. Cuba has been studying HIV vaccines for a while now. Cuba is the leader in vaccine research and in health care in Latin America. Lately, other countries, like Trinidad and Tobago, have been approached to establish clinical trial sites. What I am trying to say is that countries are targeted very specifically by certain individual pharmaceuticals, or whoever is conducting the trial.
There was a perinatal AZT trial occurring in the Dominican Republic, and the ethics controversy came into play, so it was removed from there. Another clinical trial issue concerns continuity -- can a person continue to use the drugs that were useful during the trial? In the perinatal trial we have talked about, women were offered treatment during their pregnancy, but what happens after she has delivered? Will she develop resistance to the drug since it was only given for a limited amount of time? So, there are many issues that arise from the clinical trial situation in developing countries where access is going to be limited.
BP: Yes, I remember reading about the perinatal trials, and reporting about them in Body Positive. In addition to the Dominican Republic, these trials were being conducted in many African countries like Uganda, Ethiopia, and Tanzania (to name a few), and Thailand. People were very upset that AZT was being withheld from the participants even though it was available. The justification for withholding treatment was that these women wouldn't normally have access to antiretroviral treatment anyway, so investigators were merely studying the normal tide of events if there were no study.
JP: Advocates and community grassroots groups must play an important role to diminish harm in a variety of ways that it can occur. This includes harm that can occur by removing a clinical trial from a country. There must be ground for negotiation when ethics are called into question. The same problems occurred in North America with certain groups being used and certain practices being employed, and activists played an important mediation role. The U.S. cannot just go into a country and take a paternalistic stance toward conducting trials. There has to be some negotiation, some neutral mediation process so that it is not some imperialistic power coming in to do what it wants to do and just leave. This clinical trials issue is complicated and must continue to be sensitively addressed.
BP: You mentioned Cuba. Is it surprising to you that Cuba has taken a leadership role in HIV prevention and treatment research? Most U.S. citizens would be surprised to learn that Cuba is a leader in these areas. In fact, most people view Cuba as being hostile and punitive toward people with HIV. What's the story?
JP: From the Cuban government aspect, HIV/AIDS is being addressed as a health care issue. The Cuban health care system is one of the best in the region. Cuba is a health care leader in Latin America regarding many different diseases, so the approach that they are taking toward HIV and AIDS reflects their standing in the health care area. The U.S. blockade that restricts industry from engaging in any business transactions with the Cuban government has a negative impact on its people, but they have the ability to conduct some innovative research because they don't have patent restrictions that are imposed in the U.S. There are different pluses and minuses. The people living with HIV and AIDS in Cuba have been hurt by the institutions and the government when the government supported the sanitarium scenario, but we're talking about several years ago. This is not the scenario today. Today, that scenario is not as strict.
I was in Cuba last year and learned that this is not a major concern anymore. People are concerned with access, and this is where the blockade begins to get intriguing. According to the government, they can't purchase drugs because of it. I wish that the blockade would be lifted, especially around medication. If it is lifted, then the government won't have an excuse to not purchase the drugs that people need. There are several initiatives where people in the U.S. are trying to make drugs available, like the U.S. Cuban Medical Project, where we provided $500,000 worth of medication. One or two pharmaceuticals tried to sell medications to Cuba, and they were fined by the U.S. government, so this sent a clear message to other pharmaceuticals not to do business with Cuba. Again, this situation inhibits access to treatment.
I have one last point that I would like to make, and this concerns grassroots, non-governmental organizational efforts in the Latin American region that merit great recognition for their initiatives in the face of significant lack of government support. These communities have organized and responded much quicker than their governments. We can take pride that there are many successful efforts in many Latin American countries. Most of these countries today have national groups representing people who are living with HIV and AIDS, they have held national meetings, and women's groups have formed. If there is anything good that we can say about AIDS, it is how this disease has helped people to mobilize as communities to respond to the pandemic. Because there are many initiatives about which we do not know, we underestimate the impact the people are having in developing countries where they are mobilized.
I feel fortunate to be able to know about and learn from their initiatives. We need to put more focus on how we, in the so-called developed world, can learn from these initiatives. For instance, in the U.S., we have failed in our prevention efforts in many communities. Yet, there are countries in Latin American that have had almost no funding, and have been more aggressive and more successful implementing and maintaining HIV prevention efforts. We have pockets of immigrants in the U.S. that come from some of these countries. Why aren't we going to these countries to solicit programmatic solutions to bring back to effectively serve the groups that we are failing to impact? We could use their help to employ cultural sensitivity measures, or translation services. These are a few of the applications that we could use here.
Photo by Lisa Stein
Back to the October 1998 Issue of Body Positive Magazine.