Rodrigo Pascal

Rodrigo Pascal is breaking down prejudice against people with HIV/AIDS, winning legal battles for their rights, and creating more effective healthcare through a grassroots coalition that merges civil society organizations with public health institutions.

Rodrigo is creating a model for citizen response to turn the formerly specialized problem of HIV/AIDS into a public health concern in which everyone has a stake. He brings together grassroots groups created by and for people with HIV/AIDS to advocate for health and labor rights and to work in coordination with the public health system to help meet the needs of this population. Rodrigo's initiative is the first response to the AIDS problem in Chile led by the affected people themselves.
Unlike organizations that provide services only to people with AIDS, Rodrigo's organization, Vivo Positivo, is transforming the way the disease is dealt with by changing attitudes and systems within the current legal and health structures of the country. Rodrigo integrates grassroots prevention groups into public health centers to provide better care, and he empowers people with HIV/AIDS to become advocates for themselves. Although his ideas for changing society's response to major health issues have evolved specifically for people living with HIV, they have the potential to address the needs of other groups and ultimately to change the structure of the public health system.

Chile is entering a critical decade in the fight against AIDS. According to the Ministry of Health's National AIDS Commission, 4,899 people in Chile are living with full-blown AIDS and 5,555 people have HIV. These small numbers belie a large and steadily increasing infection rate: the HIV-infected population is growing at a rate of 20 percent per year, primarily among women and young men. AIDS has become the second-leading cause of death among men in metropolitan regions and is the fifth-leading cause of death in Chile, affecting mainly the population ages of 20 to 40. It is estimated that by 2010, AIDS will be the leading cause of death in Chile.
Several cultural and political factors have prevented Chile from preparing itself for the many fronts on which the battle with AIDS must be fought. Within Chile's deeply conservative society, people with HIV face ostracism and intense prejudice: until recent years, they did not dare appear in public without covering their faces. The HIV diagnosis is commonly considered the "social death" of a person. The lack of accurate information about the disease and fear of infection fuels discrimination and stigmatization throughout Chilean society. No law guarantees employment stability for a person with HIV, so impoverishment is added to discrimination. In addition, the media reinforces social prejudices about HIV/AIDS when reporting on the disease, thus further promoting discrimination.
Currently, there is no legislation guaranteeing public treatment and services for those infected. Because poverty prohibits adequate health care, only 40 percent of people with HIV who require treatment have access to it. About a quarter of families that have one person infected spend about half of their monthly income on treatment. Those who do seek treatment may be frustrated and endangered by unreliable supplies of medication. Private healthcare, of course, neither guarantees treatment for the infected nor attends to those who cannot pay.
Other social institutions contribute to the lack of efforts to combat the disease. The Catholic Church in Chile has a strong influence on state decisions with respect to public health policies. Since AIDS is an illness that produces various ideological, moral, and religious apprehensions, the problem is difficult to approach. The educational system, too, mimics society's prejudices, fears, and apprehensions about the disease. Accordingly, it does not teach sex education or AIDS prevention.
Organizations working on behalf of people with HIV have traditionally concentrated on service delivery without aiming to change a more broadly flawed system. Grassroots organizations formed by people with HIV permeate the country, but until now they have been low-profile and isolated, without combining efforts to undertake a common agenda. These are typical symptoms of the citizen sector's early efforts to combat a fairly new problem. The question is, however, how to build among existing and new groups the capacity to address AIDS as an impending public health crisis that is bound to pose major legal, financial, political, and social challenges to Chilean society over the next decade.

In this critical moment, Rodrigo is building new institutions and reorienting old ones to help contain the epidemic and avert a national catastrophe. Rodrigo founded Vivo Positivo in 1997 to change the quality of life for people with HIV and to change the view society has of them. He is achieving this goal through public education about the disease in order to encourage prevention and advocacy for the rights of people living with HIV and to reach out to the HIV-positive community in order to assess and respond to their needs.
Rodrigo implements all three of these strategic elements through the organization of annual national meetings on HIV, usually with 800 to 1,000 participants, including people with the virus, policymakers, academics, and citizen sector representatives. These meetings provide a unique opportunity for Chileans with HIV to access decision-makers directly.
Vivo Positivo also pursues other means of public education. It uses television and written media to help change the image of the disease and to encourage scientific research to undermine unfounded societal fears. In addition, Rodrigo is advocating for the inclusion of sex education in the Chilean school system. Knowing that the process will have more strength if led by the major beneficiaries of this change, Vivo Positivo has invited the Chile Youth Parliament to work in partnership toward this goal.
Rodrigo's main advocacy efforts, though, are focused on gaining rights for people with HIV/AIDS. To strengthen Vivo Positivo's capacity to advocate for legal rights for people with the disease, Rodrigo works in partnership with the Diego Portales University Public Interest Juridical Clinic. Together they attempt to guarantee access to antiretroviral treatments. Rodrigo also works with the International Center for Justice and Law to present lawsuits to the Human Rights Interamerican Comisión. Additionally, Rodrigo has worked with the Deputy Chamber and the Senate since 1997 to enact an AIDS law that clearly establishes patients' rights and protects them from discrimination. The law is currently slated for approval by the Chamber.
Finally, Rodrigo not only encourages people diagnosed with the disease to identify themselves, but also works with them and the organizations that support them to more effectively respond to their needs. Vivo Positivo has representatives from 25 grassroots HIV/AIDS organizations, and it continues to recruit others. The organization conducts workshops in rural communities that aim to explore attitudes toward AIDS, discuss prejudices, diagnose needs, assess resources, and establish effective partnerships. Rodrigo disseminates scientific knowledge about the virus to raise awareness of the importance of keeping up with treatment and to encourage people with HIV to become active in the prevention of the disease. Convinced, however, that real impact will not be possible unless the public health system changes, Rodrigo encourages the emergence of grassroots groups inside the local healthcare centers.
Vivo Positivo functions with a multidisciplinary team of 13, including sociologists, anthropologists, and psychologists, and 10 monitors in secondary prevention. It has a board of 5 members and a council of 25 people representing the grassroots organizations. It also gathers volunteer groups for prevention, juridical assistance, and cultural initiatives for people with HIV. Rodrigo has been able to raise funds from national and international organizations like the Ford Foundation, World AIDS Foundation, National Organization for AIDS Research in France, and UNAIDS.
Describing his goals for the future, Rodrigo emphasizes strengthening his model by enhancing financial and management sustainability among local organizations and systematizing Vivo Positivo´s experience so that it can be replicated in other countries and so follows the example of what has happened in Peru and Bolivia.

Rodrigo was born in a well-to-do Chilean family and attended a conservative Catholic school, where he was often humiliated and discriminated against for being "different." In eighth grade, his father decided to move him to a different school. Although this early experience left Rodrigo full of guilt and shame, in the new school he participated in Boy Scouts and theater activities and soon gained respect from his peers. At the same time, he started engaging in political discussions and working as a volunteer in the slums. In his 20s, he worked at an institution for people with physical disabilities on a project that promoted personal development and self-esteem through creativity. It was a difficult but positive experience through which Rodrigo discovered his own skills in resolving conflict through dialogue and developing other people's potential for overcoming adversity.
After his student activism caused his departure from the university, followed by marriant and the birth of his child, Rodrigo began work for a private trade company to provide some economic stability to his new family. Despite the lack of a degree, he advanced to a managerial position, where he developed several innovative projects and achieved an excellent performance assessment from his seniors. Simultaneously, from 1984 to 1988, Rodrigo worked in an ambitious artistic project–the Exposition "Espacios Vida" Life Spaces–which marked a milestone in Chilean Art, gaining significant media coverage and receiving more than 3,000 visitors. This activity helped him to face his fears, and in 1989, knowing it would be difficult to define his sexuality within the conservative Chilean context, he made the difficult decision to leave his wife and three children and go to the United States.
Arriving in the United States with just $500 in his pocket was a challenge for Rodrigo; he found himself without the protection of his upper-class life. He started out by living in subway stations and cleaning floors, but ended up as a creative designer at a prominent firm and eventually launched his own company. He got involved with the homosexual community and found himself helping and supporting friends with HIV/AIDS. In 1995, knowing he wanted to return to Chile and work with people with AIDS, he established contacts with different organizations in New York to acquire expertise in this field.
In 1996 he returned to his native Chile and by the end of the year was diagnosed with HIV. He became even more determined to change the situation for people with HIV in Chile. For treatment he went to the public hospital–Dr. Sótero del Río–where there was a small support group for people with HIV. Rodrigo started to participate in the group, organizing community meetings and fundraising to obtain medicines and equipment. He met other grassroots organizations of people with AIDS, and in May 1997, Rodrigo began to promote the idea of uniting to deal with urgent treatment issues. This was the beginning of Vivo Positivo.