I G L H R C

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COUNTRY PACKET

SUPPORTING DOCUMENTATION FOR ASYLUM CLAIMS

CHILE #4

(2000-2002)

STATUS OF PEOPLE WITH HIV/AIDS

Table of contents:

• Women with AIDS Suffer Discrimination, 7/10/02, Inter Press Service

• Diagnosis on sexuality and discrimination suffer by people living with HIVJAIDS in five

cities of Chile, 7/7/02, 14th International AIDS Conference

• Access to care for people living with HIVJAIDS in Chile, 2001, Annabella Arredondo

• Transforming Practice through Activism, 6/2/01, Human Rights Dialogue

• Chile's HIV/AIDS issues, 5/19/00, Bay Area Reporter

•••

Double sided pages: 8

The International Gay and Lesbian Human Rights Commission (IGLHRC) makes every effort to ascertain the accuracy of the items contained in this packet which are products of its own research. Nevertheless, some of the information contained is based on research by third parties unconnected with IGLHRC. Accordingly, IGLHRC cannot assume any responsibility for the accuracy of the information contained in this packet obtained by these third parties.

The information contained in the packet was supplied solely for the purpose of supporting an asylum or immigration claim. This information cannot be used in any other way without the consent of IGLHRC.

Women with AIDS Suffer Discrimination

4/512005 J 0:5 J AM

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Women with AIDS Suffer Discrimination

Inter Press Service - Wednesday, July 10, 2002

Gustavo Gonzalez

SANTIAGO (IPS) - Veronica, 45, worked three days a week as a domestic in a household in a posh district in the Chilean capital, until her employer found out she was an HIV-carrier and dismissed her.

She never received any explanation from her employer, who simply stopped calling her, thus abruptly cutting short a six- month work relationship without paying any severance pay, taking advantage of the fact that she had no work contract, Veronica told IPS.

Violations of the rights of employees, discrimination in schools against the children of people living with HIV, and discrimination in access to healthcare were some of the human rights abuses that women testing positive for HIV (Human Immunodeficiency Virus) listed to IPS in Chile.

Veronica belongs to FEM (Fuerza y Esperanza de Mujer - Strength and Hope of Women), one of the three Chilean organisations representing female carriers of HIV - the virus that causes AIDS (Acquired Immunodeficiency Syndrome) - in this Southern Cone country of 15 million.

As of Jun 30, 2001, there was one woman with HIV/AIDS in Chile for every 7.8 male patients, according to National AIDS Commission (CONASIDA) statistics, which confirm that the disease is increasingly affecting women in Chile, because the ratio was one female patient for every 28.4 males in 1990.

Since the first case of AIDS was reported in Chite in 1984, 4,300 cases have been documented, as welt as 4,930 cases of HIV- carriers who have not yet suffered the onset of full-blown AIDS. A total of 2,824 people have died so far.

Homosexual men are still most likely to suffer HIV/AIDS in Chile, although the proportion of heterosexual patients, including women, is steadily growing.

Like many Chilean women, Veronica was infected by her husband. She was diagnosed as a carrier in 1998, shortly before he died.

"When I found out I had HIV, I was in really bad shape, I wanted to kill myself with my Children. My husband cried. I asked who had infected him, and he said he didn't know," said Veronica.

"We are now seeing the 'feminisation' of AIDS, which means it is growing faster among women than men, and female carriers are generally more vulnerable in economic terms, as they tend to be homemakers," Dr. Anabella Arredondo, executive coordinator of CONASIDA, told IPS.

"That flies in the face of the argument that the women who are more prone to infection are those who are involved in the sex trade. Actually, most female HIVcarriers are housewives, and it is difficult to make them see thai they are at risk, when they believe they are safe," she explained.

Prevention messages targeting these women must address sensitive issues. For example, the women must begin to admit the possibility that their husbands are. unfaithful, and stop believing that they are safe just because they are in a stable relationship.

Veronica has suffered discrimination at the hands of her husband's family, who blamed her for infecting him. She also believes it was her sister-in-law who told her employer that she tested positive for HJV, which got her fired.

Veronica receives a widow's pension equivalent to 52 dollars a month, and her 22-year-old son helps out with another 30 dollars a month, while a neighbour has helped find her ironing work to take in. She and her 11-year-old daughter survive on what she can scrape together.

Erica Espinoza, 27, is secretary of Voz de Mujer (Women's Voice), as well as the representative in Chile of the International Community of Women Living with HIV, and an adviser to Vivo Positivo (I Live Positive), a federation of groups linking HIV/AIDS patients.

"One day my partner got pneumonia and they asked him if he wanted to be tested. That's when he found out that he had been infected a long time ago. I have been living with the virus for two years now," Espinoza told IPS.

After falling into a deep depression that led her to drop out other accountancy studies, she turned to mental health experts who specialise in assisting HIVcarriers, and was able to complete her university degree, graduating as an accountant

"If you have children, the biggest difficulty you suffer is the discrimination against them. Another problem is getting public healthcare," said Espinoza.

Women HIV-carriers must take time off from work for medical visits and exams, she pointed out. And if they are taking the anti- retroviral cocktail therapy, they have to do it secretly, whether they are trying to keep their job or are hunting for one, she added.

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Women with AJDS Suffer Discrimination

4/5/2005 10:51 AM

"When it emerges that a woman tests positive for H1V, she is laid off, or she is demoted and her salary is cut, to push her into quitting," the activist complained.

The women grouped in Voz de Mujsr "have a hard time gel1ing appointments at the dentist or the ophthalmologist, or getting pap smears and the other regular controls," Espinoza added.

Isabel, age 41, found out four years ago that she was HIV- positive. Like Espinoza, she was tested along with her husband, when he fell ill.

Her daughter, who was two at the time, was found to be free of the virus.

Nevertheless, "when my daughter was three, her application to the day care centre was rejected. When I went to re-enroll her in December (the southern hemisphere summer), they told me there was a problem. and that she could not continue there any longer. although Ihey said that if there was still a spot open in March (at the start of the school year), they could take her," Isabel told IPS.

"But in March. they told me they could not accept her, because someone had informed the school that my husband and I had AIDS. I said it was true. but that my daughter didn't, and that even if she did, she had the right to an education.

"I cried a lot, because it wasn't my daughter's fault," said Isabel. who was finally able to get her daughter into another day care centre, with the help of CONASIDA (ENDJlPS/LAlHE HDfTAA-SO SW/GGR/DM/02)

020710

IP020717

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Service. IPS-ONLINE. WMd Desk via Pantspama 207 00184 Rome. Italy. Email: info@ips.org http://www.ips.org .

AEGiS is made possible through unrestricted grants from Boehringer Ingelheim. Elton John AIDS Foundation. iMetrikus, Inc •. John M. Lloyd Foundation. the National Library of Medicine. and donations from users like you. Always watch for outdated intorrnation This arncre first appeared in 2002. This material is designed to support. not replace. lne retatlonshp that exists between yOIJ and your doctor.

AEGiS presents published material, re-printed with permission and neither endorses nor opposes any material. All infonnation contalned on this websue, jnduding mtcrmanon re:~ating to health conditions> products, and treatments, is for infonnatianal purposes onty. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own phyStci3n Or other medical professionals. Atways discuss treatment options Ylith a doctor who spectajzas in ~reating HIV.

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AEGiS-14IAC: Diagnosis on sexuality and discrimination suffer by people living with HIV/AlDS in five cities of Chile

4/5/2005 10:52 AM

14th International AIDS Conference

Barcelona, Spain - July 7~12, 2002

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Diagnosis on sexuality and discrimination suffer by people living with HIV/AIDS in five cities of Chile.

lnt Conf AIDS 2002 Jut 7-12; 14:(abstract no. D11139}

Velis FJ, Donoso C, Pascal R, ZorrilJa S

VIVO POSIT/VO - Universfdad de Santiago, Santiago, Chile

BACKGROUND: World AIDS Foundation and Merck pharmaceutical company supported this research. It was aimed to identify the main discrimination lands, which affected PLWA's in Chile, it includes 'also an analysis of how PLWA's live their sexuality as seropositive people.

METHODS: Qualitative methodology was used. We conducted seven focus groups (group interviews) as well as ten deep interviews. The sample was formed by women and men living with HIV/AIDS from Santiago, Rancagua, Iquique, Valdivia and Punta Arenas.

RESULTS: There are considerable degrees of discrimination in access to treatment, health care, discrimination in the labor market and within families. In· Santiago there is less discrimination from healthcare providers than another cities, since that in the last ones was observed less confidentiality and higher degrees of homophobia, On another hand, PlWA's show difficult in their sexuality after they know their positive serological status. It is important to highlight gender differences related to how PLWA's start their sexual activity again. Women have more difficulties than men in re-start their sexual activity because they cannot incorporate the use of condom in their relations. Their obstacles are not only male chauvinistic beliefs but also they are afraid to transmit the HIV,

since they do not trust condoms. Also they stated a strong relation between sexuality, emotions and scare of be rejected because of HIVe

CONCLUSIONS: It is necessary to perform empowerment workshops to promote PLWA's citizen rights on healthcare, education and work lands. Promotion of safe pleasant sex is needed, specially taking into account the gender perspective, since the results of this research show that sexual and emotional conflicts are different for men and women. Also, it is important to consider differences between urban and rural population in this kind of interventions.

Keywords: AEGIS, Acquired Immunodeficiency Syndrome, Sex Behavior, Sexuality, HIV Infections, HIV Seropositivity, Condoms,Stress, Psychological, Culture, Prejudice, CD4 Lymphocyte Count, Interviews. Cities, Chile, Focus Groups, Human, Female, Male, diagnosis

020707 D11139

Copyright © 2002 -International AIDS Society (lAS). Reproduction of this abstract (other than one copy for personal reference) must be cleared through the

lAS. '

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Access to care for people living with HIV / AIDS in Chile

Annabella Arredondo

As of June 2001/ Chile's population amounts to 15 million people. In 1999, per capita GDP was US$ 8652.

Increased demographic transition status, with slowing growth (a decrease from 2.36% to 1.37% occurred between 1960 and 1998) and a steadily aging population (older than 65 years of age increased from 4.3% to 7% between 1960 and 1998). Access to basic urban utilities in 1997: 99.3% had drinking water and 90.4% sewage.

Chile's Human Development Index at international comparison, increased from 0.803 in 1990 to 0.847 in 1998; The highest level of success is observed in education and the lowest is income.

Women in Chile have the same and even better access to education and health than men but lower salaries.

In 1988, adult literacy for men was 94.6% and 94% for women; The rate of school enrollment (lower, high school and college) for the same year was 78.4% for men and 78.2% for women. In 1990, per capita GDP in men was 3.6 times higher than women's, decreasing its gap to 2.8 times in 1998.1

Health in Chile

National health expenditure in 1999 was 5.8% of the GDP; for the same year, public expenditure with AIDS was 0,1% out of the total public health expenditure."

The health system in Chile is a combination of public and private. The following table is a summary of last year's health indicators available for the country.

Table 1· Chile health indicators

Indicator Year Rate
Birth rate 1999 17.6 x 1000 inhabitants
Professional assistance at 1999 99.7%
childbirth
General mortality 1999 5.5 x 1000 inhabitants
Infant mortality 1999 10.1 x 1000 corrected live births
Neonatal mortality 1999 5.9 x 1000 corrected live births
Mortality between 1 and 4 years 1999 0.4 x 1000 children between 1 - 4 years of
of age age
Maternal mortality 1999 2.3 x 1000 live births
Life expectancy at birth 2000-2005 75.96 both genders
72.99 men; 79.04 women I Index for human development in Chile, 1990 -1998: UNDP. Human Development in Chile - 2000 2 Study of national accounts, preliminary report. UNAIDS - FUNSALUD

Indicators are revealing good access to health but are hiding inequalities, both at regional level as well as in socioeconomic level. Equity to access is yet a challenge in our country.P

HIV infection

Prevalence studies at sentinel sites are carried out with non-linked anonymous methodology in high incidence regions.

T bl 2 HIV

- Ch-I 1992 1999

t

a e : preva ence In preq nan women In Ie" -
1992 1993 1994 1996/7 1998/9
Metropolitan region 0% 0% 0,1% 0,1% 0,05%
(0/2013) (0/1641) (2/2093) (2/1634) (1/2002)
VIII region 0% 0,1% 0,1% 0% 0%
(0/2021) (2/2004) (2/2002) (0/1963) (0/1978) Founded diiterences are lackmg stetisticet significance.

Table 3: HIV prevalence of HIV at sexual diseases clinics, Chile 1992 -:- 1999

1992 1993 1994 1996/7 1998/9
Metropolitan region 2,46% 1,96% 1,30% 2,97% 3,49%
(11/447) (8/407) {(5/394) . (9/403) (13/372~
V region (Valparaiso) 0,22% 0,98% 0,93% 0,75% 0,50%
(1/451) (4/405) (4/428) (3/400) (2/3951
II region (Antofagasta) 0% 0% 0,18% 0% . 0,25%
(0/296) (0/368) (1/546) (0/277) (1/395)
. , Differences for each centre throughout time have no statistical significance .

Epidemiological summary for AIDS4

The first case of AIDS, was reported in 1984. By December 31, 20005, 4085 .cases have been reported at national level, out of which 2705 have died. 46406 asymptomatic HIV+ people have been reported within the 13 regions of the country.

Main route is sexual transmission which accounts for 93.5% of the cases; blood transmission reaches 5.0% and the vertical a 1.5%.

Urban placement; rural trend; it predominates in homo/bisexual men and it shows a fast increase ·of heterosexual transmission; a. tendency towards feminine occurrence (with higher impact in women due to cultural factors of gender inequity in the social-labour area and in partner relationships); evidence exists of its movement towards impoverished men and women as well as a displacement towards older, ages.

3 Health Condition in Chile. Epidemiology Department, Health Ministry, 2001

4 The information contained in this document is obtained from the report sent by physicians and Health Services to CONSIDA. It represents about 85% of the total AIDS cases in the country.

5 Source: Bole/in Epidemiologico Semestral (Biannual Epidemiological Bulletin) on AIDS N· I3, CONASlDA, December 2000

Care of people living with HIV / AIDS (PLWHA)

. Antiretroviral (ARV) medication reduces mortality and improves life quality of PLWHA. Inequity of access to such medication, and to needed care, deepens in a developing world. It limits life expectancy of affected people in our country, and is followed by the subsequent family and social impact ..

The Health Ministry of Chile considers the comprehensive care to PLWHA as a proper own role of the state, a role that also includes scientific research and its health requirements.

Patents in Chile

A trade agreement is being negotiated between United States and Chile (it was expected to be finished by December 2001), and should be consistent with copyright standards of the World Trade Organization established in the Agreement on Trade Related Intellectual Property (TRIPs). Avoidance of a moredemanding TRIPs plus approval is being considered; the use of flexible agreements to protect public health is a proposition.

ARV medication protected by patents in our country are Indinavir and Efavirenz, together with the combination zidovudina - didanosin 7

Implemented Strategies towards accessing antiretroviral therapy

• Centralized purchase in order to reach a scale economy through public bidding.

• Negotiations with local pharmaceutical companies.

• Progressive purchase budget increase for ARV: 320%, between years 1996 and 1999.

• UNAlDS Project: (i) In 1997, UNAIDS invited Chile out of four other countries to participate in the project to ease access to medication for PLWHA. This implies an : association between the Health Ministry, pharmaceutical companies and scientific societies so as to optimize public resources, decrease prices, define therapeutic designs and to optimize distribution channels. It also includes working with Health and PLWHA teams to maintain adherence to treatment. (ii)· In 1998 this initiative received a 17% discount in medication prices. (iii) In 2000, within the framework of the Initiative, a pre-existent agreement between UNDP and the Health Ministry was used to import medication, reducing import rates and with an average discount of 23% for the ARV's. (iv) In June 2001, negotiations between UNAIDS and companies headquarters meant a significant price reduction from some laboratories reaching an average of 50% price reduction.

• HIV/AIDS medication budget transference towards the Program for Complex Illnesses belonging to the National Health Fund means separating budgets for care and prevention, ensuring the budget exclusive use for medication as well as strengthening budgetary negotiations with the Treasury Department.

• A feasibility study for the incorporation of qeneric medication to the therapeutic depository. It was conditioned to a result assessment of bioequivalency tests, receiving it only from a lab in Brazil, one that has not been able to export until recently.

7 Department of Economy of Chile

Project of Law "Regulations on prevention of infection caused by the Human Immuno-deficiency Virus" states that in addition to promoting prevention and non-discrimination of people living with HIV/AIDS, allows the reimbursement of the tax applied to importation from the private sector that are carried out through non-profit organizations. Approved in both chambers, it is only lacking the President's promulgation.

Current status for therapy access in Chile

• ARV therapy for all children with HIVjAIDS beneficiaries of the public sector (100), according to protocols

• Free access to protocol ACTG 076, to prevent vertical transmission of HIV, to all pregnant women living with HIV in the public and private sector (50

- 100 per year) .

• Free access to prophylaxis protocols of labor exposure to HIV

• As of November, with adults, an increase is being considered from 750 bitherapies and 750 tritherapies to 2600 tritherapies. (Adults under control thatrequired treatment in June 2001 were 3221 people)

• For these people, analyses are available - total lymphocytes, CD4 and viral stress determination (3 of each per year) that allow monitoring the impact of the therapies that will be added, during year 2002, to genotype characterization in selected cases.

Other implemented measures

• Guide for clinical care of PLWHA, including updating of ARV protocols done together with a consulting scientific committee.

• Training under this protocol to all care teams in the. country.

• Qualitative study of the training needs for adherence and, regarding them, the creation of counselling guidelines for health staff and PLWHA to support adherence to treatment, the guidelines are being elaborated with both groups.

• Logistic system for a rational medication distribution line; implementation of a national data base for therapy and stock control.

• Creation of support material for nutrition, healthy habits and antiretroviral use for PLWHA.

• StrategiC planning of care with .health teams.

Impact Indicators

• Delay of AIDS apparition. As of 1998, and for the first time, AIDS incidence rate dropped 13.2% as a consequence of the impact of the therapies.

• Reduction on the mortality rate by AIDS: it dropped 30.9% between 1997 and 1998.

• A drop on the HIV transmission rate from 30% to 2.6% in pregnant women that received protocol ACTG 076.

Summary

As of June 2001, Chile's population amounts to 15 million people. Per capita GDP -US$ 8652 in 1999. Increased demographic transition with slowing growth and a

steadily aging population. Access to utilities in 1997: 99.3% had drinking water and 90.4% sewage.

National health expenditure in 1999 was 5.8% of the GDP; public expenditure for AIDS was 0.7% of the health public expenditure. Indicators reveal good access to health but also hide important inequities.

HIV Infection: Prevalence classifies Chile as incipient typology.

Epidemiology of AIDS: Main means of transmission is sexual, reaching 93.5%; blood transmission reaches 5.0% and vertical transmission 1.5%. Urban epidemic tends to rural areas, is predominant between homo/bisexual men, with a tendency towards heterosexual behaviour, predominantly in men. Tends to feminine occurrence, impoverishment of men and women and displacement towards older ages.

Patents: Negotiating trade agreement between United States and Chile according to intellectual property standards of the WTO established by the TRIPs. Protection flexibility is expected for public health. Protection for Indinavir and Efavirenz, and the combination zidovudina - didanosina.

Implemented strategies towards accessing antiretroviral therapy • Centralized purchase ..

.. Negotiations with local pharmaceutical companies. .. Progressive inverted budget increase for ARV.

• UNAIDS project.

.. Budget transference for medication National Health Fund.

• Feasibility study for the incorporation of generic medication.

.. Project of law, reimbursement of taxes to the private sector through nonprofit organizations.

Current status for therapy access in Chile

• All children with HIV/AIDS are beneficiaries of the public sector.

• Free access to protocol ACTG 076 for all pregnant women living with HIV.

• Free access to prophylaxis protocols after labor exposure to HIV.

• Adults, increase from 750 bitherapies and 750 tritherapies to 2600 tritherapies.

.. Control analysis.

Other implemented measures

• Updating of ARV protocols.

• Training for all care teams in the country.

• Counseling guidelines to adherence health staff and PLWHA.

• Logistic system for a rational medication distribution line.

• Support material for nutrition, healthy habits and ARV for PLWHA. .. Strategic planning of care with health teams.

Impact indicators

• Delay of AIDS apparition. As of 1998 and for the first time, AIDS incidence rate dropped a 13.2% as a consequence of the impact of the therapies.

• The mortality rate by AIDS dropped 30.9% between 1997 and 1998.

• A drop on the HIV transmission rate, from 30% to 2.6% in pregnant women that received protocol ACTG 076 .

..

I

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'Transforming Practice through Activism

41512005 10:55 AM

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tNTH!oIAT10~J.l AFfA1H r . .. . . - . . .

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Timothy Frasca is a U.S journalist who has resided in Chile since 1983, and is a founding member of Chile's first AIDS-related organization. He is currently researching the social response to AIDS in Latin America as part of a comparative study of eight countries' experiences. He also serves as General Director of the CIPRESS Foundation in Santiago.

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Transforminq Practice through Activism

Timothy Frasca

Jacinto, a thirty-nine-year-old AIDS patient at the public Hospital del Salvador in Santiago, suffered an attack of herpes zoster during the winter of 2000. Although rarely serious, the painful condition, also known as "shingles," is common among people with HIV/AIDS. The nurse in charge of the HIV program at the hospital assured him that acyclovir or an equivalent was readily available at the hospital pharmacy to treat the outbreak. "I arranged that purchase myself, so I know it's in stock," she told him. When Jacinto took the prescription to be filled, however, the pharmacist said no acyclovir remained. He offered no explanation and had no information on when the situation might change.

Jacinto sought help from the staff of an HIV prevention and support organization, Corporaci6n Chilena de Prevenci6n del SIDA, where he volunteered (and which I directed for nearly a decade). Rather than look for an alternative source for the drug, we decided to press the issue with the hospital. A staff advocate advised Jacinto to return the next day and insist that the pharmacist give him the drug. If he was denied again, he was to write down the name of the hospital pharmacist and the date and time on the prescription form, and ask the pharmacist to sign it as confirmation. If that failed, Jacinto could ask for the hospital complaint book.

Fortunately, these escalations were unnecessary. Jacinto made clear to the pharmacist the steps he was going to take, and the missing acyclovir finally appeared. "I insisted and had an organization backing me," Jacinto recalls. "But a lot of people just give up."

There is no way of knowing whether Jacinto was the victim a simple mix-up, staff indifference, a shortage of drugs, or outright discrimination against him for his HIV status. Such problems plaguing Chile's health care system are not exclusive to the HIV/AIDS program--nor are the frustrations they engender. "Many of the people we counsel are already beaten down by everything that has happened to them," explains Elena Droguett, a 70 year-old caseworker who started out as the secretary of a local AIDS organization and now works for the Fundaci6n CIPRESS in Santiago. "They don't have the energy or the spirit to make demands on the hospital or its staff. They want to get out as fast asthey can."

Similar tales of bureaucracy, scarcity, and discrimination are repeated thousands of times throughout Chile's troubled public health service. While some "rights" to health care may theoretically exist in Chile, such as free treatment for HfV-related illnesses, actually receiving these services is far from automatic. Whether Jacinto was in fact the victim of HIV-related discrimination, simple incompetence, or a systemic shortage, his right to the treatment he needed was violated. Jacinto's announced intentions threatened to make the facts visible. By insisting that individual staff members assume responsibility for their actions-a technique borrowed from the human rights field--he made the refusal of treatment potentially costly to all concerned.

Droguett says she and her colleagues always believed they were defending people's human rights in their advocacy and support work. But only after hearing Argentine lawyer Susana Chiarotti from the Centro Latinoamericano de los Derechos Humanos de la Mujer describe their human rights approach during a seminar talk in 1999 did

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Transforming Practice through Activism

4/5/2005 10:55 AM

they realize that human rights advocacy could provide specific methods for improving health care delivery for their clients. Chiarotf explained that women's groups in Latin America have been taking advantage of the international agreements that emerged from UN conferences, such as the International Conference on Population and Development in Cairo in 1994 and the Fourth World Conference on Women in Beijing in 1995, to monitor and fight unjust health policies.

Chile is now awash in human rights-related court cases--including more than 250 against former dictator Augusto Pinochet--based on information carefully compiled over the years in which no local court would grant even a habeas corpus writ. These data were assembled by groups offering direct support and services to the people affected by political repression: lawyers, doctors, psychologists, social workers, and support groups. "In Chile we have a long history of human rights work because of Pinochet and the dictatorship," says Oroguet1. "But we didn't realize that these same techniques could be used to break down barriers to health care and build a case for structural changes." The human rights-centered approach involves identifying an entitlement and then patiently insisting that it be fulfilled. When the system breaks down, those affected are encouraged to document every detail in the process. 'We learned from the human rights movement that a key element of any complaint or public criticism is having unassailable facts of specific instances," says psychologist Valeria Garcla, a long-time health activist in her neighborhood in the southern Santiago shantytowns. "It isn't enough to say, 'These things are happening.' You have to say when, where, what, and who was involved. And you have to get it right"

Jacinto's story illustrates how. individuals can .learn to make effective demands on institutions unused to being held accountable for respecting people's rights. But the case-by-case resolution of patients' treatment problems does not in itself address the issue of chronic shortages. When there are not enough drugs to go around, arbitrary decisions about who receives them are inevitable. Those better able to raise the cost of refusal will be more likely to succeed in forcing the system to respond to their needs; however, as activists seeking the well-being of our clients, we who utilize human rights language and methods at the case- by-case level are aware that each "success" for one client implies that someone else will be deprived. The next step must be to push for incorporation of patient benefits in an explicit set of guarantees, based on the system's capacity to provide them.

The current government's plan for broad health-sector reform, including a package of patients' rights to improved services, provides an opportunity in this regard. Despite considerable increases in health spending since the restoration of democracy in . 1990, Chile's public health system has not detected increased satisfaction among users. This fact has obvious political implications, and government leaders are interested in finding ways to transform practices, including institutional culture, to achieve better results from the budget increases. By illuminating and exposing arbitrariness and inconsistency in current practices, and by patiently placing demands on the system in one case after another, patient advocates believe we can build pressure for change. At a minimum, increasing the number and frequency of queries and complaints is likely to generate pressure throughout the system for more resources.

The human rights approach to quality of care is a promising strategy for improving the

. beleaguered health care system in Chile and for paving the way for individuals to take positive action. Activists will have to turn their efforts in pursuit of incremental gains or .individual triumphs into solid data for policy reform. In the systematic promotion and defense of a person's right to adequate health care, Chilean activists have a multitude of opportunities both to require health care institutions to carry outtheir promises and

to identify what new commitments can and should be made. •

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AEGiS-BAR: Chile', HIV,AIDS issues

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Important note: Information in .this article was accurate in ·2000. The state of the art may have changed since the publication date.

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Chile's HIV/AIDS issues

The Bay Area Reporter - May 19, 2000

Homer Hobi, Survive AIDS Writers Pool

I just returned from a. three-week trip to Chile. From San Francisco, I have been running a program thatsupplies AIDS medications to an organization there for thepasl two years

According to UNAIDS at the end of 1999, an estimated 1.7 million people in Latin America and the Caribbean were infected with HIVIAIDS; of these, 30,000 were children. During 1999, there were 207,000 new HIV infections in the region. Cumulative adult and child AIDS deaths number 780,000.

Officially, Chile has a very minor HIV/AIDS problem given the population of Ihe region. According to an article in the main newspaper of Chile (El Mercurio_ March 14, 2000) there are only 15,000 people with HIV/AIDS in Chile in a population of 15 million. They have a similar epidemic profile as San Francisco in thai approximately 85 'percent of people with HIV are men who have sex with men.

But government statistics often are misleading. Discrimination towards people with AIDS runs rampant within Chilean society, and often skews statistics. If an employer discover-s that someone is HIV-positive, often they are fired.

Because of anti-discrimination laws against this practice, the claimed reason for job termination is never HIV I spoke to a host of PWAs who lost their jobs: three from the Carbineros (national police), a former executive at a British company, and others. They suddenly receive unfavorable Job reviews, or some other reason pops up lor their being fired. For the PWA it becomes more difficult to get a new Job; they are required to gel an HIV test and they now have an unfavorable report from their ex-employer.

Additionally Chile has a names-based reporting system, The only way to get an anonymous test is to know someone at a laboratory and pay for the test yourself. Given the high level of discrimination, people are very resistant to getting tested" The net effect is to increase the overall risk level of the population: if Chileans do not know that they have AIDS, they will behave as if they do not

I felt a certain amount of d j vu in reading Bill Snow's April 13 Survive AIDS column in which he wrote about Ihe barriers to Latino gay and bisexual men in having safe sex: "machismo. homophobia, family cohesion (close personal involvement with homophobic families), sexual silence, poverty." One PWA who invited me to his home (0 have lunch with his parents told me that they know about his HIV status but he had never told them he was gay. He is 49 years old and lives at home with his upper middle class parents. Another PWA, whose sister moved to the Bay Area with her lesbian partner to have a child, told me that about 80 percent of his gay friends think that it is a horrible idea for them to have a baby The amount of self-hatred is enormous. Most gay men in Chile assume that their partner is of the same serostatus, which makes unsafe sex permissible. Condoms are only available in drugstores and they are expensive (they cost between 50 cents to $1 while the minimum wage is around $300 per month).

The resistance to getting tested means that people generally find out their status either through mandatory testing or when they are taken to the hospital with PCP. I spoke to a Jot of people with HIV/AIDS and not one found oul through voluntary testing. Most gay Chileans feel that it is better not to know The concept of knowing as soon as possible because you can take actions before you become sick only exists in some forgotten recesses of collective gay Chile's memory. This puts people who are at riskin a situation of double jeopardy. For those in the private health system, once the insurance company receives a person's HIV diagnosis they begin procedures to terminate the PWA's policy. (Of course, not for havinqHlv).

!.i'ven though people feel that health care is better in the private system. coverage does not include HIV medications, The public health system, which cares for 80 percent of Chilean society, does have a small program of providing HIV medications. However, the waiting list can take up to two years, The program only covers some 750 people with bitherapy (two nucleoside inhibitors) and sorrie 700 people with triple therapy (a protease inhibitor and two nucleosides). For the people who find out thai they are positive by going to the hospital with' PCP, their situation is of dire need. They are at a moment when they need medications but cannot gel them. And if they have private health coverage, they usually lose that within a few months.

Unlike here, Chilean PWAs are constantly worried about how they are going to get their medications in the coming months.

Additionally, because of the high level of discrimination against gays iri general and specifically against PWAs, very few people are willing to commit to any sort of activism. Because of this and the relatively small number of people with HIV, the government Can afford to simply leave things as they are. Meanwhile PWAs die. During the whole tripfel! like I was in a time warp, being transported back (0 the begin'ning of the epidemic here.

The AIDS MediCine Recycling of Positive Humanists & Friends is supplying medications to some 50 people in Chile. Although this is not a solution to the problem, it is lifesaving support for those who receive the medications. We are also trying to get the PWAs there to pressure the government to provide medications, through working with legislators, lawsuits, and street demonstrations. Until the government does its part, you can help by giving us your extra, unused medications. Call for details (415) 285-0606 or e-mail me at hobi@humanisLorg.

hltp:llwww.aegis.com/news/barI2000/BR000511.hlml

AEGiS-BAR Chile's H1ViAIDS issues

11/3/04 2:07 PM

For more information, check out the Positive Humanists & Friends-Aids Medicine Recycling Project report at www.humanist.org/-hobioratwwwgeo.lo/aidsrx 000519

BR000511

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