Living with HIV/AIDS

Javier Hourcade

Introduction

The XI International AIDS conference was promoted worldwide with the slogan "one world, one hope". Sometimes, slogans can sustain a half truth or remain without content. In this case, the slogan referred, first, to "one world". The slogan probably aimed to suggest worldwide solidarity against a epidemic which does not respect geographical boundaries, or cultural barriers, or language barriers. But, if thre is something that exposes from its early steps the existence of different worlds, it is the AIDS disease. First World vs. Third World, developed vs. under-developed, North vs. South, rich countries vs poor countries. There is not one world; there are many worlds, as many as people living with HIV/AIDS and people who are culturally, socially, economically and politically vulnerable to exposure to the HIV infection.

There was a magic moment of international solidarity at the opening ceremony of the International Aids Conference, with more than 15,000 delegates who came from different countries and regions of our planet. The only moment, perhaps, when one could feel the sensation of "one world". At any rate, there were so many very different realities that led to putting each one of us at that place, on that moment. Such diversity, in fact, is a tool of empowerment, not only in the sense of joining different races, cultures and geographical origins, but also, especially, in the diversity of the commitment to and the responsibility against the AIDS crisis. In attendance at the XI International Conference, there was a huge presence of professionals from the different AIDS specialties, community representatives and community activists (both including a high percentage of people living with HIV/AIDS), representatives of international financial agencies, human rights organizations, and government representatives. The heterogeneity of the participants represent and reflect the interrelationship of social, political and scientific factors of the struggle against HIV/AIDS, in everyday life and outside the conference.

Secondly, the slogan talks of "one hope". What hope? The cure, maybe. Throughout this monograph many different AIDS-related hopes will be mentioned: from the hope of having free access to the last protease inhibitor or more and better viral load tests to the hope of having access to food and a place to sleep. In the presence of this disease there is not "one hope", one treatment, one vaccine, or one cure. These are not the only hopes of all the people living with HIV/AIDS, especially if one takes into consideration, for example, that a person cannot take any kind of treatment, a pill, on an empty stomach.

One world and one hope do not exist, neither does the commitment, the responsibility, the solidarity, the decision from all on what needs to be done.

This monograph aims to describe and analyze one aspect from Vancouver 1996 that can be given greater importance in our daily work on AIDS work: the community answer and participation in the AIDS epidemic.

For the last eight years this has been one way of my involvement in the struggle against HIV/AIDS; the other came earlier, six months earlier, and today it is living with me in my blood.

Before Vancouver 1996

Before the XI International AIDS Conference was held, there was a kind of excitement in all areas related to HIV/AIDS, prompted by the recent approval of new types of therapies for HIV infection (e.g., the protease inhibitor) as well as by the recent development of better ways to evaluate the infection’s progression in our bodies through the viral load test. Major pharmaceutical companies have also continued to develop better treatments for opportunistic infections. Many observers began to talk about the possibility of medical science having advanced to achieving something like "chronic AIDS", with death rates going down. People responsible for public-health policies in developed countries quickly pointed out that the numbers show that the relationship between the treatment and the costs indicate a cost per year of nearly US $25,000 per patient, just for drugs only. What health system will be able to afford the costs of this "chronic AIDS"? Not to mention that the advent of combined treatments entail an increase in costs, combined costs.

Latin America and Caribbean countries did not have that kind of problem; indeed, countries in this region did not have access to any kind of treatment.

In what follows, I will detail some key data on our region:

Diagnosis. In most countries of our region we have discovered that approximately 75% of the people living with HIV/AIDS are not aware of their HIV status. This is due to several factors: the lack of AIDS campaigns and information/prevention programs to promote the testing of people who are likely to have been exposed to HIV. In the region, only 10% of the Latin American and Caribbean countries offer its population free access to an HIV test. Many countries do not have enough reactives to perform the test, not even on the country’s blood banks. Roughly only 25% of the countries in the region guarantee anonymous testing. Few countries have the resources to provide access to the confirmatory test (i.e. Western blot), meaning, therefore, that many of our countries do not observe the international norms of HIV infection diagnosis.

Clinical Follow-up. With the exception of countries that already have police enforcement or military control for people living with HIV/AIDS, in all other countries an average of two out of three HIV-positive patients disappear from the health-care centers. This means that less than 35% of the people who know their HIV-positive status continue with medical care and control. We have very few health-care centers, public and private, to offer adequate treatment and assistance to people living with HIV/AIDS. In many countries, infectious-disease public hospitals are used to assist people living with HIV/AIDS, with the consequences that such practices have for HIV patients. All countries in the region have National Aids Programs; however, not all provide health-care professionals with training and general guidelines on how to deal with HIV/AIDS.

Treatment. Only 10% of the countries in Latin America and the Caribbean actually provide, free-of-charge (without guarantee of continuity), the first generation of anti-retroviral treatments (i.e. AZT, DDC and DD) to HIV-positive people. The health centers do not have the basic treatment to deal with opportunistic infections, very common in our region, as for example TBS, PCP, etc. Also, they do not have the resources to make T-cells counts for the patients.

As an example, in Peru, many people living with HIV/AIDS self-prescribe themselves uña de gatos (a natural herb) without any scientific basis, because they do not have access to any of the other treatments.

In Brazil, three states recently resolved to provide protease inhibitors in response to community pressure. But, in the majority of the Brazilian states, the local governments do not cover the minimum nutritional necessities for people living with HIV/AIDS, as is also true for the general population..

Human Rights and Discrimination. In Latin America and the Caribbean, to be HIV-positive means in general to become an unemployed person. In many countries in the region the practice of labor-related HIV testing is spreading, leaving HIV-positive people without the right to work, and all the social consequences thereby implied. Having social insurance and health services is frequently linked to having a job. When HIV-positive people lose their job, they also lose their social and health services. The lack of anti-discrimination laws leave people living with HIV/ AIDS absolutely unprotected.

Private health insurance does not cover HIV/AIDS disease, so HIV-positive people must go to public-health services already overloaded with tending to the poor population.

Community answer. Despite that many of the region’s countries were previously ruled by military dictatorship régimes, the AIDS crisis has spawned the emergence of a growing social and community movement. Many non-governmental organizations and initiatives in the region express, in some way, this community answer and they have also become the only place where people living with HIV/AIDS can find support and services. Home care, prevention, volunteers, counselors, and the like are some examples of how a community has faced the HIV epidemic. Also, the community covers the lack of public and official services for HIV-positive people.

Networks. During the last 13 years of the AIDS epidemic in the region, different alternatives of organization have been developed. The need to foster and increase the voices of people living with HIV/AIDS, the need to share spaces to exchange experiences and the need for mutual support¾ local, regional and global¾ have created the conditions for different networks of people living with HIV/AIDS:

Pan-American Association of People Living With HIV/AIDS (AP+)

In December 1990, during the first encounter in Colombia of Latin American people living with HIV and AIDS, the AP+ was created. In the second encounter (Mexico, 1991) the AP+ bylaws were approved.

Aims. To promote mutual support between people living with HIV/AIDS, to facilitate the exchange of information and experiences, to fight against discrimination, to demand access to treatments, to promote human rights and active participation in scientific events.

The next encounter took place in the city of Buenos Aires in 1992 and the last encounter in the city of Sao Paulo in 1994. During the encounter in Brazil the AP+ established its action plan, including three medium-term work plans, in the areas of communications, human rights, and health/quality of life.

The next encounter will be held in the Caribbean region in 1997. At present, the AP+ board is working very closely with the regional board directors of the Global network of people living with HIV/AIDS (GNP+), with a view to jointly creating the Regional Council.

International Community of Women Living With HIV/AIDS (ICW)

The ICW is the only network of and by women living with HIV/ AIDS, who held a pre-conference meeting during the International Conference of People living with HIV/AIDS.

The ICW was created during the International Aids Conference in Amsterdam (1992) with a meeting with 27 representatives participating. At present¸ the ICW works in 70 countries offering education, support and advocacy of community activism at the local, regional and global levels.

The ICW usually deals with the following issues: isolation, sexual abuse, pain, pregnancy, childhood and HIV, among others.

The ICW is composed of five regions (Africa, Asia/Pacific, Latin America/Caribbean, Europe and North America); in each region they work with three key contact organizations and they also have a central secretariat in the city of London in the United Kingdom.

Global Network of People Living With HIV/AIDS (GNP+)

During 1986, as part of Mr Dietmar Bolle’s initiative, the first meetings were held to set up an international network of people living with HIV. In 1987, with the support of "Body Positive" funds, the first network was created in the United Kindom, the first step to organize the first international meeting in that same year, called "Taking Care of Ourselves" with over 50 delegates. The next meeting was held in Munich (1988) with 200 delegates; the following was held in Copenhagen with 230 delegates. At the meeting held in Madrid in 1990 Latin American delegates attended for the first time. After this Conference, an International Steering Committee was established; in 1992 this committee was changed, being renamed the Global network. The first office was located in London and a Financing Agency was established. For the first five years of the Global Network’s existence, Europe donated the services of an executive director.

The aim of the first GNP+ (Global Network of People Living With AIDS) was to develop global programs in health, human rights, communications, outreach, capacity building, identity, among other areas.

The last GNP+ International Conference had a record assistance of 700 delegates who worked during a week in Cape Town, South Africa. The next International Conference of People Living With HIV/AIDS will be held in 1997 in an Asian country.

The Global Board is composed of sixteen directors who were elected during the conference and represent the balance of the five regions of the world. The GNP+ has a central secretariat in the city of Amsterdam with three staff members. All board members are part of this regional board, represent a sub-region (e.g., South America) and are also part of one of the five working groups (on finances, conferences, public relations, projects, and exchange of information).

Regional development

At present, Latin America and the Caribbean (LAC) has three networks of People Living With HIV/AIDS: ICW, AP+ and GNP+. In order not to triplicate efforts, the representatives of these networks are working on a "joint development proposal", with a view to making the most of the region’s few resources for the region, the difficulties in communications, and the similarity of missions and aims.

During the International Conference on Home Care (Montreal 1995) LAC representatives decided to: a) foster the communication between the three networks; b) improve our profile at the global level; c) enhance our visibility in our region; and d) outreach and support for country-level initiatives.

The GNP+ obtained funds for a strategic-planing workshop that took place at the end of 1995 in Santiago de Chile. The workshop resulted in the decision to create the Latin America and the Caribbean Council of People Living With HIV/AIDS, with equal representation of the regional networks.

G.I.P.A (Greater Involvement of People Living With HIV/AIDS)

On December 1, 1994, in Paris, France (with a French initiative) the Paris Summit took place. During this meeting, 42 countries signed the Paris Declaration, and this initiative gave way to developing the idea of G.I.P.A.

The GNP+ and the ICW played a key role in drafting this document.

Briefly, G.I.P.A. set forth the commitment of different actors in the AIDS field to guarantee a Greater Involvement of People Living With HIV/AIDS in decision-making process and in the formulation of related policies.

In January 1996, a follow-up meeting of G.I.P.A. was held in Paris. As a result, all the networks involved evaluated the scant impact of the Paris summit propoal and set up new strategies to reinforce the proposal’s impact at the regional and country levels.

In this opportunity, representatives of Latin America and the Caribbean took advantage to hold many meetings related to regional issues. In September 1996, a Latin America and the Caribbean G.I.P.A. meeting will be held in Bogota, Colombia.

The process of decision making

Country level

In the majority of the region’s countries, all AIDS-related issues depend on a National Program or on National Commissions; at the same time, they depend on the health ministries. Experts and technical professionals are in charge of the National Programs or Commissions, which usually are empowered only to make suggestions or recommendations. Policy policies and actions are made by high-ranking government officials, who have never considered AIDS to be a national priority. Also, such government officials are very ignorant of AIDS-related issues and are vulnerable to pressure from religious groups, economic groups, and so forth. As a result, the most common symptome is the inexistence of AIDS prevention and assistance campaigns or programs.

Usually, the HIV/AIDS epidemic is considered to be exclusively a health problem, thereby always remaining under the competence of the health ministry. In our region, we have a tradition of a lack of involvement of other ministries¾ e.g., labor, education, justice¾ in AIDS-related issues.

In our region, we are experiencing a kind of "fashion" , the thinking of which is to privatize all health services, so that public health will fall under the competence of the economy or finance ministries, and, consequently, less resources will be allocated to public health.

At the high level of our governments, for example the President, AIDS is isually denied to be an issue. In Latin America and the Caribbean virtually no President has made any public statement on AIDS. Meanwhile, our legislative bodies, with the exception of Colombia and Venezuela, have not provided for a minimum framework to ensure the quality of life of people living with HIV/AIDS.

At the regional and international level

In Latin America and the Caribbean, the Pan American Health Organization has collaborated in supporting community and non-governmental initiatives.

But these types of international organizations are unable to respond against human rights violations. The answer, perhaps, has to do with the fact that such types of organizations are part of the United Nations System, and, accordingly, depend organically on U.N. member states’ governments.

New questions and expectations are raised in relation to the recently created United Nations Programme on AIDS (UNAIDS).

Latin America and the Caribbean have received, to some extent, financial support from other countries, but, in many cases, it has become part of the recipent country’s external debt (e.g., Brazil).

Individual risk and Social vulnerability

At the Vancouver conference’s "track D" thematic sessions, many aspects were touched upon relating to the new different conceptions of risk, exposure, and vulnerability.

Dr. Richard Parker said: "[.] At the same time that we may have witnessed a slowing global response to the epidemic in recent years, we have also seen an important increase in critical reflection concerning the social,cultural, economic and political causes of HIV infection and that the results of this reflection offer a point of departure for renewed efforts in the future".

Many people who have done research on the social aspects of AIDS in the last few years are building and shaping this growing perception of what might be described as the social dynamics of HIV infection. The dominant theories and models that have guided work on HIV/AIDS prevention have been revised, shifting from earlier, more individualistic, information- and education-driven notions on AIDS to more multi-dimensional models of collective empowerment and community mobilization as potentially more effective long-term strategies of response to the epidemic.

Parker also said:"[.] We have gradually begun to see the emergence of a new understanding of the degree to which the struggle to respond effectively to HIV and AIDS is in fact part of a much broader and more long-term struggle, with more far-reaching social change aimed, of necessity, at addressing the underlying issues of inequality and injustice that have created the conditions for the spread of HIV infection and AIDS."

Perhaps the key point of departure for re-thinking the approaches that initially guided the response to HIV/AIDS has been a far-reaching re-conceptualization of the social dimensions and dynamics of HIV infection. Over much of the first decade of the epidemic, our thinking was largely dominated by a notion of individual risk¾ a sense of the ways in which specific behaviors (linked to attitudes and beliefs) of particular individuals might open the way for HIV transmission.

In the vast majority of societies, however, the spread of HIV infection quickly escaped any attempt at clearly defined epidemiological groupings.

Parker said: "In spite of our own rhetoric in the mid 1980s, HIV/AIDS has never been a democratic epidemic."

The conception of risk rooted in individual behavior has moved to a more collective social configuration. Perhaps the most important transformation in the thinking about HIV/AIDS, during the 1980-1995 period, has been the attempt, by shifting from the notion of individual risk to a new understanding of social vulnerability, to move beyond this contradiction between risk groups and the general population. Without in any way denying that all human beings are biologically susceptible to HIV infection, or that transmission in fact takes place through the behavioral practices of specific individuals, this expanded concept of social factors, which place some individuals and groups in situations of increased vulnerability, has more fully enabled us to begin to perceive the ways in which social inequality and injustice, prejudice and discrimination, opression, exploitation and violence continue to function in ways that have accelerated the spread of the epidemic in countries around the world. If we focus our analysis on social vulnerability, we are able to understand more fully the causal relationship between discrimination and sex workers or gay men, the relationship between gender-related power or oppression and women infected with HIV/AIDS, as well as the relationship between social and economical marginalization and AIDS and poverty. To begin to have a perception of the HIV/AIDS through the concept of social vulnerability is a long-term process. It will be the basis on which to build new models of intervention, prevention and education to reduce the AIDS impact, its transmission and social vulnerability.

From the prevention of AIDS to Social mobilization

Based on theoretical models¾ such as the health belief model, the theory of reasoned action, or social learning theory¾ interventions sought to produce behavioral change in target population groups by providing them with knowledge and information about HIV/AIDS and by increasing their perception and awareness of risk, in order to stimulate rational decision-processes that would lead to risk reduction. In study after study, the findings report that information, in and of itself, is insufficient to produce risk reduction.

Education must be more than an act of depositing information and knowledge in persons. More appropriately, according to Paulo Freire’s notion of consciousness-raising, education should be a dialectical social process aimed at building awareness through dialogue and at taking action together with others in order to redress social injustice. This notion of consciousness-raising perhaps lies at the heart of empowerment and community mobilization as strategies in the fight against AIDS.

Community Response

During the two day previous to the XI International Conference, the British Columbia University held a Community Forum with the participation of more than five hundred of people living with HIV/AIDS and community activists from the five WHO regions.

In what follows, I will set forth a brief review of the four key issues that the Community Forum addressed.

Social research, Evaluation and HIV/AIDS

The fight against AIDS is a battle to save lives and to improve the quality of life by effecting change. It is often difficult to know if we are effecting the kind of change we would like or one that is not desired. Social research and evaluation have been important guiding tools in community movement efforts. After more than a decade, it is time to examine the results of community action in PWA organizations and NGOs in relation to the work done by researchers.

Social research seems to have undergone a shift in emphasis in the past few years. Although generally constructed with an emphasis on individual behavior, it seems to have become more pluralistic. From documenting the spread of HIV to documenting AIDS-related knowledge, attitudes and behavior, social research has begun to look more closely at areas such as social environment, perceptions of sexual risk and sexual safety, and the role of desire and intimacy.

In a period of limited resources and increasing demands, the ability to evaluate scientific and community-based programs on HIV/AIDS will become more and more necessary to measure effectiveness, give direction and establish a funding base.

Challenges:

1. Understanding the social determinants of health and integrating that understanding into our work.
2. Working with marginalized communities in areas such as sexuality, gender and drug users.
3. Building research and evaluation skills in NGOs.
4. Strengthen the social value of community response, at an equal level to scientific research and initiatives.

Treatments and HIV/AIDS

AIDS treatment issues are diverse and complex. They range from advancing the basic science research agenda ( vaccines, gene therapy, immune modulators, etc.) to clinical science (combination antiviral therapies, compassionate access, prophylaxis and treatment of opportunistic infections), to including supplementary therapies and nutrition. Issues such as cost of therapies, access to therapies, care, support and rehabilitation are paramount. Disparities in access to health care and experimental therapies emerge based on geographic location, income, gender and even route of infection. The urgency of each issue varies dramatically from region to region, from country to country, and from community to community.

Challenges:

1. Standards of care for persons living with HIV/AIDS.
2. Information on developments in treatments related to HIV/AIDS.
3. Access to clinical drug trials and experimental therapies.
4. Access to prophylaxis and treatment of opportunistic infections.
5. Development and access to vaccines.
6. Alternative and complementary therapies.
7. The basic requirements of good nutrition.
8. Innovative models in care and support.

Human Rights and HIV/AIDS

In 1994 the UN Secretary General pointed out that " a strong and clear public health rationale exists for the protection of human rights and the dignity of infected persons" , so that they might seek assistance without fear. This is critical for the care of persons living with HIV/AIDS. It also needs to be extended to the rights of women, children, the poor and the disenfranchised and to groups such as sex workers, injecting drug users, gay, bisexual, the transgenders, and lesbians.

Dr. Mike Merson (Yokohama Aids Conference) talked about the three societal forces driving the spread of HIV and blocking effective education, prevention and care: " denial, discrimination and disempowerment".

Challenges:

1. Conflicting perceptions about the role of human rights in the context of HIV/AIDS.
2. Common mechanisms to express the violation of the rights of persons living with HIV/AIDS or vulnerable communities.
3. Building knowledge and skills on human rights in NGOs.
4. Advocating for national international policies on protecting human rights for persons living with HIV and vulnerable communities.

Community and Organizational development and HIV/AIDS

Over the past ten years of community involvement in AIDS, persons on the front-lines have recognized the need for a multi-dimensional approach to AIDS. Part of this multi-dimensional approach is the active involvement of persons most concerned by the epidemic: those living with HIV/AIDS and persons from vulnerable communities. This active involvement has meant, however, that much has yet to be learned and developed in terms of different communities managing their own issues.

Challenges:

1. Building a framework for public policy and advocacy.
2. Transfer of capacities and skills.
3. Improve the communication.
4. Building coalitions.

Access to treatment in under developed countries

Eric Sawyer (ACT UP New York) during the opening ceremony said:

" I am afraid that you all will miss the real message from this conference. I speak specially to the media, who have started the spin that the ‘the cure is here, lets dance...’. If you think the cure is here, think again. The cure its not here."

The fact that the protease - combination drug treatments are showing a lot of promise in blood tests of the very few people who can get them does not mean that the cure is here. Yes, the preliminary results from these hugely expensive combination treatments look great. But we are a long way from a cure, even for the rich who can afford the treatments. And we are no closer to a cure for the majority of people living with AIDS on this planet than we were ten years ago. Most PWA´s can’t get an aspirin.

Are you listening yet? The headlines PWA´s want you to write from this conference would read as follows: "Human Rights Violations and Genocide continue to kill millions of impoverished people with AIDS" That is the truth about AIDS in 1996.

The truth is, genocide continues against poor people with AIDS, especially those from developing countries, by AIDS profiteers who are more concerned about maximizing profits than saving lives. Drug companies are killing people by charging excessive prices. This limits access to treatments. The greed of AIDS profiteers is killing impoverished people with AIDS.

The truth is, the governments of the world are killing people with AIDS, because they think public health is to isolate the rich (often white) population from the diseases of the poor, by instituting immigration barriers instead of providing health care to the sick.

I hope that I have gotten your attention. Because people with AIDS need access to treatments, not false hope. People with AIDS need the protection of their human rights. People with AIDS also need a global initiative to get treatments into developing countries.

But, before this can happen, we must end the genocide. Before this can happen, we must end the greed. Because greed = death, end the greed. Demand access to all.

Recommendations for improving access to treatments in developing countries

1. Establish international committee to facilitate communications regarding treatments options
   

1.1. Set up avenues to foster communications (i.e. internet access)
1.2. Identify grant sources for hardware/software
1.3. Create mechanisms to provide information and skill-based training for health-care providers and community networks on recent advances in treatment.

2. Establish regional/national consortia to collaborate in price negotiations for designated HIV/AIDS medications and diagnostic and evaluation tests in developing countries.
3. Create a pool of funds to cross-subsidize treatment options between developing and developed countries.
4. Create incentives to establish local drug manufacturing sites or distribution centers within developing countries.
5. Establish inter-country regional centers to provide technological support for HIV/AIDS diagnostic and evaluation tools.
6. Negotiate with donor sources for treatment-specific funding.
7. Ensure that National AIDS strategies include adequate resources for medications and diagnostic and evaluation test without compromising prevention and care funding.
8. Review patent laws, international/national rules and regulations and other obstacles which pose barriers to treatment access.
9. Encourage the expansion of clinical trials within developing countries.

9.1. Develop detailed guidelines for clinical AIDS research relating to accessibility and ethics.
9.2. Establish mechanisms to enforce the guidelines.
9.3. Support clinical trials of affordable and easy to manufacture products as well as traditional and supplementary therapies.

During the Symposium on Access to Treatments, U.S AIDS National AIDS Policies Director Patricia S. Fleming said:

"There are direct linkages to prevention; for example, we have drugs for the prevention of mother to child transmission. Lack of access to drugs is a major problem for developing countries, but this problem also exists to a lesser degree among undeserved populations in industrialized countries, including my own. Though the access problems and solutions will be different across geographic, social and economic settings, there are broad areas in which we need to move forward simultaneously."

Although we all work toward this long-term goal, there are important steps that can be taken right now:

First, we must prioritize. National governments along with NGOs and the PWAs community must identify the best therapies including: drugs for STDs, drugs to prevent or treat opportunistic infections, or drugs to control pain.

Number two. Prioritizing alone is not enough. It should be accompanied by the selection of low-cost generic products when these are available for particular indication.

Number three. We need to do more to train our health care workers. Even if the national governments are doing a better job of selecting drugs to purchase for their citizens, this will do little good unless health care workers have the tools and training they need to prescribe and use drugs appropriately.

Advocacy and activism have changed drug research and regulation in the U.S. and other developed countries. They could be agents of change in developing countries as well. People living with HIV and AIDS have become more intelligent consumers of drugs; they also advocate reducing funds wasted on inappropriate drugs.

In addition, we must work with pharmaceutical companies to lower prices overall, or to set lower prices under certain conditions. We must get them to conduct clinical trials in developing countries under the most ethical conditions. And we must ask international financial institutions such as the World Bank and the International Monetary Fund to provide more assistance.

I want to return to an earlier theme, the role of people living with HIV/AIDS. No voice rings louder or clearer than the voice of someone living with HIV or AIDS. No public official or drug company executive can for very long ignore these voices. So I said to the affected community: "Keep your voices loud and clear. Organize and demand."

Counseling: A model to assist people living with HIV/AIDS in Latin America

It is a presentation at Vancouver 1996 by the SPES Foundation, Buenos Aires Argentina.

The HIV epidemic in Argentina started in 1982. Since then, it continues to grow in a society which, for decades, has suffered dramatic political changes, one of the causes of human life depreciation and the aggravation of the socioeconomic crisis. It is estimated that 30% of the Argentine population is umployed and 70% of the workers are underpaid, thereby unable to satisfy their essential needs and those of their family groups. Continued negative government administrations have neglected the public health system and almost all its services and programs. Corruption in government areas deteriorates this serious situation. It is most probable that an Argentine person Living with HIV will lose his employment and his social security. There is a lack of assistance and of treatment, which can only be expected from the National Health System. The respect for human rights, which includes non-discrimination, is neither offered nor respected as regards persons living with HIV/AIDS are concerned.

Characteristics of people living with HIV in Argentina

Due to what was previously outlined, people tend to isolate themselves. An alarming percentage deny the results of the tests. When confronted with a positive ELISA result, they do not continue with routine tests and checking. They face the existence of HIV in their body when the first opportunistic infection occurs, generally PCP. Their family group and circle of friends are not aware of the situation. They do not have control. They confront with great fear all aspects related to confidentiality. They are an easy target of unscrupulous curers.

Management Cases program structure

It consists principally of three teams which work interdisciplinary, namely:

Medical team. Formed by clinic physicians and infectologists specialized in HIV/AIDS. Other specialties participate, such as pediatritians dermatologists, pneumonologists, etc.

Psychotherapy team. Integrated by psychologists and psychiatrists.

Counseling team. Formed by non-medical professional counselors.

In order to provide a better service to our clients, a program for handling cases has been established as from the last three years. The SPES’ clients receive the outlined services, as follows:

1. Admission

1.1.Counseling. Should a client require any of the services, he is offered a first interview with the counselor. In this interview his needs and expectations are analyzed and a full explanation of the program and its operation is provided. The client is assigned to a physician according to his characteristics, so that he may feel more comfortable and at ease.
1.2.Medical. The client is first interviewed by his "eventual" head doctor who has previously received a report from the counselor.
1.3.Psychiatry and psychology. All clients should pass through a psychical admission and evaluation interview.
1.4. Medical history file. Each client has a very complete personal record which contains an up-dated report of each one of the services.

2.Second Interview

At this interview, the Counselor evaluates with the client the quality of the services offered, as well as his relationship with the different professionals to whom he has been referred and whatever misunderstanding or uneasiness is thereby solved.

Services offered through the program

1. Clinical specialization on HIV/AIDS.
2. Psychiatric and psychological services.
3. Emergencies.
4. Psychotherapy.
5. Supporting Groups.
6. Social Services
7. Legal and anti-discrimination advice.
8. Advice and interconsultation on treatments
9. Access to treatments for persons without resources.
10. Family assistance
11. Obtainment of treatments from abroad.

Results:

With a group of thirty clients of SPES (four women and twenty-six men) an evaluation was carried out among clients who receive counseling and those who do not. Our Management Cases program in one year show: decrease of unnecessary consultations; greater assistance to their periodical controls and tests; increase of prevention treatments and prophylaxis of opportunistic infections (OI); higher demand of individual and group psychotherapy; increase of safe sex practices; reduction of cost by client; and increase of tests of clients with HIV negatives.

It has been verified that, in one year, admission of new clients was duplicated, natural desertion reduced in 50%, and some of the clients have become AIDS volunteers.

Summary:

Due to the context in which the community lives, people with HIV/AIDS are faced with a very strong social battle, more difficult yet than the one they face with the virus itself. We have learnt very early of the importance of the client’s actively increasing his participation in administering his health; and, for this, he needs information, orientation and services. Furthermore, the client develops a relationship with his counselor which naturally crops up in the physician’s office. The SPES, through its counselors, ensures that its clients do not discontinue their treatments. As counselors, we support the clients in rediscovering the importance of defending their needs, by forgetting to be "patient" and becoming "IMPATIENT".
Ms. Elida A. Gramajo, SPES Foundation , Author

Paris Summit , December 1st 1994 ( and a follow-up the next two years)

"We, the heads of government or representatives of the 42 states assembled in Paris on 1 December 1994: 1)Mindful that the AIDS pandemic, by virtue of its magnitude, constitutes a threat to humanity, that its spread is affecting all societies, that it is hindering the social and economic development, in particular of the worst affected countries, and increasing disparities within and between countries, that poverty and discrimination are contributing factors in the spread of the pandemic, that HIV/AIDS inflicts irreparable damage on families and communities, that the pandemic concerns all people without distinction but that women, children and youth are becoming infected at an increasing rate, that it not only causes physical and emotional suffering, but is often used as justification for grave violations of human rights.

2.-Solemnly declare: our obligation as political leaders to make the fight against HIV/AIDS a priority, our obligation to act with compassion for and in solidary with those with HIV or at risk of becoming infected, both within our societies and internationally, our determination to ensure that all personas living with HIV/AIDS are able to realize the full and equal enjoyment of their fundamental rights and freedoms,our determination to fight against poverty, stigmatization and discrimination, our determination to mobilize all of society in spirit of true partnership.

3.-Undertake in our national policies:

the promotion of and access to various culturally acceptable prevention strategies; improvement of women’s attars, education and living condition; specific risk-reduction activities; and safety of blood and blood products, etc.

4.- Are resolved to step up the international cooperation through the following measures and initiatives:

• Support a greater involvement of people living with HIV/AIDS.
• Promote global collaboration for HIV/AIDS research by supporting national and international partnership.
• Strengthen international collaboration for blood safety.
• Encourage a global care initiative.
• Mobilize local, national and international organizations.
• Support initiatives to reduce the vulnerability of women to HIV/AIDS.
• Strengthen national and international mechanisms that are concerned with HIV/AIDS related human rights and ethics.

During 1995 and during the Vancouver Conference we held many meetings to evaluate the Paris summit impact. The result is very clear: the impact of the Paris summit is practically non-existent. Many of the countries who signed the declaration did not respect its content. It will probably be another universal declaration destined to be part of our libraries.

10.10. Useful Conclusions for Decision Makers and Policy Makers in the Health area

1. HIV and AIDS it not only a health problem. It is very urgent to be able to move the AIDS problem from the exclusive orbit of the health ministries, in our official offices. Because that means continuing to fall in the mistake of dealing partially with the multifactorial HIV/AIDS issue. Also, we should consider that public health in Latin America and the Caribbean is a low public budgeting priority. So, if AIDS remains only a health issue, it will continue to receive few resources. Also, it is inequitative to compare AIDS with other diseases; it is not correct for the needs of the HIV/AIDS crisis itself and for other public health problems.
2. Create a specific program or commission. The characteristics of this disease needs special attention from a specialized team with a multidisciplinary constituency. It should be a model at the national, state, provincial and local levels.
3. Real and actively participation of PWAs. We, the people living with HIV7AIDS, are in fact the costumers of all the AIDS services. Who can know, better than us, what we need? As Patricia Fleming (USA) said: "People living with HIV/AIDS are the best treatment consumers, they do not waste our money."
4. Strengthen and foster the community response. The people involved in the community response to AIDS can be the best friends for the people responsible for public health in all related to HIV/AIDS. There are very useful resources, but they have a special sensitivity to be used by the governments.
5. HIV infection and AIDS its NOT another STD

Useful conclusions for decision makers and policy makers outside the Health area

1. HIV/AIDS its not only a Health problem. The HIV/AIDS is a social, cultural, political, economical and community problem, as well as a health problem. AIDS already shows us, very clearly, the socio-economical impact it has on our communities.
2. Human Rights violations and discrimination kill more than the virus. It is a ten-year urgency, that our national legislative bodies produce a legal framework to give back the minimum and basic human rights for people living with HIV/AIDS. Also, these laws must punish the different forms of discrimination acts and take into consideration the high price that discriminated people pay in attempting to have justice done.
3. Neutralize the cultural and religious obstacles. Specially in our region there is a big influence of the churches on policy-makers. In many countries the fundamentalist position of churches and cultural groups increases the spread of the virus. The moralization of AIDS interferes in all our interventions; it also increases the AIDS stigma of HIV-positive people and vulnerable populations.
4. International Solidarity. We cannot close the front-line to the AIDS. The HIV virus lives inside humans and these persons are able to move throughout the world without the necessity of showing their HIV status. Immigration restrictions, besides being condemnable. are epidemiologically useless in AIDS "control". Quite the opposite. It would be important to establish parternships between countries in order to become stronger, as developing regions, at the global level.

Conclusions and recommendations for policies and actions for the assistance of people living with HIV/AIDS, vulnerable communities, and for the prevention of the general population

1. Vision. All of us have our own vision of the AIDS-related crisis and all the problem areas. The problem comes when we set up policies or actions on our own behalf, and with only one vision. We must add and include. The best recommendation before preparing AIDS policies and actions is to open our personal vision and include the vision and the voice of people living with HIV/AIDS and that of vulnerable populations.
2. Policies. One of the common symptoms of the inefficiency of all AIDS interventions in Latin America and the Caribbean is the absence of policies. When we evaluate any governmental or community intervention, it is observed that there has been little, if any, reflection and multifactorial analysis with a view to establishing a policy to guide all future actions. Only in the non-governmental sector we found some initiatives to have strategic planning with context analysis, mission, goals and evaluation procedures. It is crucial to set up our policies in order to show others the way that we choose to take actions, thereby making it more likely to find partners that share in some way our policies, the first step to working together. Latin America and the Caribbean have a serious problem with their policies. The very lack of AIDS policies is, in fact, a policy. In this case, a policy of genocide. Moreover, the lack of commitment, denial and greed is, in fact, also a kind of policy. In the governments of our regions this is a common phenomenon. This is one of the main reasons of the trouble and the frustration in the relationships between government and community participation: the lack of clear policies. The community needs all the cards on the table before a common endeavor can be established.
3. Needs Analysis. Who are the people who know what they need? Who can say if the services that they receive are enough or good? It would appear that these questions are obvious, but, in practice, they are not so obvious. The majority of the HIV/AIDS interventions show that they do not take into consideration what their clients really need. For example, for many populations it is a priority to receive food and not drugs. It is highly negligent, in a region with few resources, that the people who design the intervention do not make a serious analysis of the needs.
4. AIDS side effects. The impact of HIV/AIDS on economic production and development will be realized when it will no longer be possible to fix up the effects. Sometimes, human pain and suffering is not enough to mobilize resources. In these moments, we must use and develop strategic arguments.
5. Prevention vs. Care. In our region, in the last decade many resources were invested and wasted in prevention and education intervention. They showed few results, but they also showed that they never has a link with health care. Latin America and the Caribbean is a region in the world with low resources invested in assistance and care of people living with HIV/AIDS. Today, the Vancouver 1996 Conference has enhanced the concept of linkage between prevention and care, giving us many examples of the synergetic effects of this combination.
6. Association models. Many relationships between governments and NGOs, as well as between financial agencies and the community, seem pathologic. We have many examples: governments conceive the development of partnerships with NGOs as "cheap labor", useful for covering government "holes" in the provision of care to the community, or else have used the community to endorse government policies/political decisions, etc. This type of subestimation of the response of the AIDS community opens a big distance between government and NGOs/ASOs. Our governments must urgently treat our community as a peer in this endeavor to fight against AIDS. Much energy is wasted in these battles.
7. Paris Declaration. I recommend to take out the dust of the Paris Declaration and transform the black and white good intentions into action.

"If we have learned anything in the past 15 years, it is that the complexity of human psyche can be as much of a barrier to saving lives as the HIV virus itself. We have learned that it is easier to deny a problem than to face it head on. And we have learned that it takes enormous strength and courage to bear the loss of so many we have loved.

But one thing I have learned is that people who persevere in the face of such barriers, people like you, are heroes in the truest sense of the word. I offer you my respect and admiration for your contributions; you make hope possible and you make me proud to be part of the human race." Elizabeth Taylor, Founding national Chairman AmFAR.

" We have a moral obligation not only to find therapies that make this disease manageable, but to make it affordable" D. Robert Gallo, July 8

" Aids continues to be an invisible disease... AIDS continues to put at risk all the citizens of our little planet, there is not any doubt that we must face it together... In our world there are more than 28 million people infected by HIV. How is it possible that the discrimination and social problems remain? If this is 90% related to ignorance, It is not only against ethics it is also unreasonable..." Dr. Peter Piot UNAIDS July 7.

HIV/AIDS during the last ten years revolutionized our conception of the world, of the human being and society. But these perceptions must not distract attention from what is happening in the here and now. The AIDS crisis is a present problem. It has never been a health problem only; it will always be a social, political, economical and cultural problem.

Much energy may be devoted to moralizing the AIDS disease, to talking about how people catch the virus, when the moral point in the AIDS crisis its to fight for more ethics, commitment, responsibility and solidarity for all involved.

All of us, more or less, are policy makers and implementers of action. The differemce may be in the power and the impact. It is taking many years for us, as part of the community, to assume our selves as decision makers. We have already paid a high price waiting comfortably for someone else to do it. If today the people who are in charge of the policy-making and decision making process are doing their job in a wrong way, Who is to be responsible for this?

If we try to be honest, we must assume that, with some exceptions, in many of our countries we elect the people who will be in our government and also in our legislative bodies. In other words, we, as a community, invest in others our power to make decisions. The problems begin when we assume the role of observers and at the same time suffer ourselves the consequences of negligence and corruption. This is not a good symptom of community empowerment. We must assume our part of the responsibility for entrusting, so quickly, in some people the power to make decisions that in the future will affect our lives.

Meanwhile, we the people living with HIV/AIDS; we the community vulnerable to the virus; we the community committed to others, continue to make our voices ring clearer and louder. No one knows, better than us, what we need.

During Vancouver 1996, we did not find the cure, or nothing that looks like it, especially for the developing countries.

But I can assure you, that, if we sit to wait for the next Conference, expecting the cure, we are making one huge mistake, one which we will pay with ourselves. Because, before the cure or the last and better treatment, in this part of the world, we must try to eat, work and live with the others.

If we do not do so, the HIV is likely to make little difference in the quality and the quantity of our lives.