VII. STIGMA AND DISCRIMINATION

General stigma related to HIV status

Why don't people have a bad attitude towards people with hepatitis, or cancer, why do they only destroy HIV-positive people, their attitude towards us is purely moral, not related to physical appearance, simply moral, and that's a lot worse.

Lena M., twenty-six-year-old HIV-positive sex worker, Pavlodar, August 31, 2002

Persons living with HIV/AIDS in Kazakhstan face severe stigma and social ostracization, as evidenced by social opinion and government policy. Public opinion is fed by misinformation about HIV/AIDS in society at large, including the fear that HIV is contagious through casual contact.²⁰⁹ Some experts and informed observers feel that information campaigns have tended to link HIV/AIDS to "evil" behavior and nourished a "we-they" attitude-that is, clean, moral people versus dirty, evil drug users, and sex workers.²¹⁰ Discriminatory government policy, including mandatory HIV testing and the segregation of HIV-positive prisoners, serves to reinforce this stigma, which is sometimes so strong that HIV-positive persons are rejected by their families. Testimony from witnesses demonstrated that HIV-positive persons are also subjected to severe discrimination in health care, and many persons told of discrimination against persons living with AIDS in employment and housing.

Some persons living with AIDS told of encountering violent attitudes, including among relatives, marked by fear and a lack of information. Alex Pasko, an HIV-positive twenty-three-year-old in Temirtau, described his sister's fear of his disease:

It's a problem for the entire society, but society doesn't understand this. They think it's only HIV-positive persons' problem, and those close to HIV-positive persons, and the whole society hits on these people. My sister said to me, `If I had my way, I would gather all of you together and cremate you, or put you behind a barbed-wire fence.' My own sister, whom I love so much and would be ready to give my life for, said this to me.²¹¹

Another source cited the case of an HIV-positive mother in Pavlodar who was sentenced to a prison term and was unable to hire paid help to look after her children due to disdain and fear among those approached.²¹²

Kazakh media to date have overall reinforced discrimination against drug users and sex workers and shown an alarming lack of knowledge on HIV/AIDS.²¹³ At an August 2002 press conference organized by the National AIDS Program, for instance, questions asked by journalists indicated that they thought segregation of HIV-positive prisoners from other inmates and widespread mandatory HIV testing were sound public health policies.²¹⁴ Additionally, some experts consider that HIV/AIDS informational campaigns and the media have tended to focus almost exclusively on sex workers and drug users, leading the general public to associate HIV/AIDS transmission and infection with these groups only.²¹⁵

Discrimination against and marginalization of injection drug users and persons living with AIDS have contributed to recognition of them by charitable organizations as impoverished and underprivileged groups. Organizations such as the National Red Cross in Shymkent, for example, have included persons living with AIDS and injection drug users in its underprivileged groups' clothes and food distributions.²¹⁶ A charitable organization managed by doctors and private interests in Karaganda provides material support including food to HIV-positive mothers and their children.²¹⁷

In large part due to fear and relentless stigma, attempts of persons living with AIDS to unite and organize have so far been extremely limited. Not one person living with AIDS has broadly publicized his or her HIV status, and even NGO workers who have been involved in high-profile harm reduction efforts are reluctant to reveal their HIV status. The one NGO in the country supporting the needs of persons living with AIDS, Shapagat in Temirtau, works to defend the rights of persons living with AIDS by providing them with information on HIV/AIDS, and support in seeking medical care, housing and employment. The organization also aims, among other things, to provide persons living with AIDS with assistance in obtaining the official papers each person needs and finding employment, and is hoping to establish a rehabilitation center to include living quarters, professional training programs, family liaison and document provision support.²¹⁸

Health services
Human Rights Watch's research revealed discrimination in access to health services for persons living with AIDS and persons at high risk of contracting HIV. To be sure, government AIDS centres have made important inroads in ensuring medical treatment for some opportunistic infections of persons living with AIDS,²¹⁹ but fear and prejudice among the medical community continue to obstruct HIV-positive persons' access to basic medical services. Staff at each AIDS center visited by Human Rights Watch said there were doctors in their districts who refused or were reluctant to provide care to persons living with AIDS due to fear or ignorance.²²⁰

The case of Svetlana S. in Temirtau illustrates an incident when medical professionals not only denied a person living with AIDS access to medical services but also violated confidentiality about her HIV status. In July 2002, Svetlana S. summoned an ambulance when an abscess on her leg burst, leading to severe bleeding. When the ambulance arrived at her home, she revealed her HIV status to the ambulance doctor, who thereupon refused to transport her to the hospital. Instead, the doctor immediately placed a telephone call to Hospital No. 3 from the neighbors' apartment; during the course of the conversation Svetlana S.'s HIV status became known to the neighbors. Svetlana S. was ultimately hospitalized and treated in Hospital No. 3, but in the hospital she was subjected by staff to further offensive verbal treatment related to her HIV status. In December 2002, when Svetlana S. lodged an official complaint against the ambulance staff and Hospital No. 3 personnel on the offensive treatment and violation of confidentiality about her HIV status, the head ambulance doctor claimed that there had been insufficient grounds for her hospitalization, and hospital staff denied altogether the allegations in the complaint.²²¹

Bureaucratic procedures have sometimes resulted in dangerous delays or forced persons living with AIDS to conceal their HIV status in order to get treatment. Alex Pasko recounted how he had resorted to hiding his HIV status in order to gain urgent treatment:

A year ago, I had a tooth pulled, some of the root remained, and there were complications. I went to see a doctor, and he told me that I had three to four days until it blew up, that I had to go for an urgent operation in the provincial hospital in Karaganda. I had to go through the Karaganda AIDS Center to get a recommendation for the operation . . . but I couldn't get the paper. I waited, and waited . . . they told me, `Run around the Ministry of Health offices, go to see the minister himself.' I said, `I don't have time for that.' . . . My jaw had seized up, I couldn't talk, and I hadn't been able to chew for a week. The swelling had spread up to my head, from my ear to my temple. . . . I was forced to take other action, I hid my status, and got the operation done.²²²

Other persons with AIDS simply avoid approaching government medical institutions out of fear of refusal of treatment or discriminatory attitudes. Thirty-five-year-old Ira Sakharova, a person living with AIDS and an injection drug user in Temirtau, had been hospitalized previously at a general government hospital. Human Rights Watch encountered her as an inpatient at the Karaganda AIDS Center, where she said:

. . . [In the regular hospital] the attitude is awful. You can see from a person's intonation, from his behavior . . . . it's a good thing that they established this hospital, so that we can undergo a cure in peace. If you go to a normal hospital, they can put you in a separate room, and people stare at you as though you were in an animal hospital, everybody comes around and gapes."²²³

Vika S., a thirty-four-year-old injection drug user and person living with AIDS, told Human Rights Watch that consistent reports of insensitive treatment at government health institutions led her to avoid them altogether:

. . . in the hospital the attitude of the doctors and nurses towards [persons living with AIDS] that have been hospitalized from here, well, they're just horrible. They stop speaking [to the patient] as soon as they find out that they're HIV-positive . . . . I myself don't go to the hospital, because I know about these attitudes, I try and take care of myself by myself.²²⁴

Shapagat director Nurali Amanzholov told of the refusal of doctors in Temirtau to treat infections caused by, for example, the use of dirty needles, stating that the injection drug users might be HIV-positive. On some occasions when the NGO Shapagat has sought to follow up on cases of the refusal of medical assistance to persons living with AIDS, the doctors in question have either refused to identify themselves or attempted to dissociate themselves from the case.²²⁵

Lack of information about and fear of HIV/AIDS continue to mark the medical establishment, compounding institutional discrimination against high-risk groups. The following event underscores the urgent necessity to intensify training of medical personnel on HIV/AIDS. In August 2002, a group of just over 250 doctors, nurses and other medical personnel sent a letter to President Nazarbaev protesting new HIV testing guidelines²²⁶ which lift the long-standing national policy of mandatory HIV testing of drug users and those in pretrial detention. In particular, the letter's signatories argued that high-risk groups would not come forward for voluntary HIV testing if there was a fee for testing, and that compulsory testing was necessary so that medical personnel would both be informed of patients' HIV status and be in a position to assume measures necessary to protect themselves against infection and to determine the required treatment.²²⁷ In an encouraging move, the Almaty-based National AIDS Programme responded with a press conference to explain the need for the new testing guidelines,²²⁸ and a vigorous defense of them was published by the National AIDS Program the following day in a leading Almaty daily.²²⁹

The new guidelines are also controversial for health professionals in the southern city of Shymkent, who argued that injection drug users and sex workers should for the time being be mandatorily tested because people in the south of the country are far from being ready to come forward for voluntary testing. The officials also said that the new guidelines should include a directive allowing for the broadening of circumstances requiring compulsory testing including, for example, the capacity to require tests of housewives who are largely confined to the home, or mandatory testing of Kazakh citizens who have spent at least three months abroad.²³⁰ AIDS and harm reduction professionals in Almaty suggested that implementation of the new guidelines would be difficult in institutions which maintain particularly repressive practices; the Almaty narcology center, they pointed out, maintains police to guard patients, and the city hospital charged with sexually transmitted infections refuses treatment to HIV-positive patients.²³¹ In Karaganda province, medical staff in the tuberculosis hospital of Colony 159/17 expressed fear and skepticism when a Ministry of Justice official informed them of the new voluntary testing guidelines. The staff told the official that if all prisoners were held together then HIV/AIDS would spread faster. Seeming not to distinguish the high contagion of tuberculosis from the low level of contagion of HIV, they also asked why, then, tuberculosis-infected prisoners were not held together with those not infected.²³²

Employment and housing
Injection drug users risk dismissal from work once their status as drug users becomes known to employers. Relatives of injection drug users and persons living with AIDS are also subject to firing and professional discrimination if these relations are revealed. Twenty-four-year-old Leila V. said that she had been dismissed from work in 2001 when ". . . an acquaintance told them [my employers] that I was using drugs, and then my boss asked me to leave."²³³ Marat S., twenty-nine, described the stigma that feeds such actions:

Society tries to shield itself from interaction with drug users. In any government office or in a private commercial enterprise, if the management finds out that one of their employees is a drug user, they try to fire him by any means. If my management knew that I'm a drug user, I would lose my job right away.²³⁴

Several persons living with AIDS also confided to Human Rights Watch that a fear of professional reprisal against their relatives fed their reluctance to reveal publicly their HIV status.

Lack of personal identity documents required by the government and employers is also a central impediment to landing work. Many injection drug users, sex workers, and HIV-positive persons lack these either because they have not had them returned upon release from prison, or, for example, they have handed them over as collateral when purchasing drugs.²³⁵ Replacing or obtaining the documents is usually burdensome and involves lengthy bureaucratic procedures, obstacles which can be bypassed by paying additional informal fees to officials. However, many injection drug users, sex workers, and persons living with AIDS lack the money to do so.²³⁶ Several sex workers told Human Rights Watch that if they had possessed identity documents and had not faced the difficulties posed in obtaining them, they would not have turned to sex work. The predicament of twenty-seven-year-old sex worker Valentina S. in Pavlodar is an example:

If you don't have documents you get locked up in a homeless persons' detention center, and there, they're supposed to help you get documents, but for some reason they don't do it. You have to pay them 300 tenge [U.S.$2], but where am I supposed to get 300 tenge? You need to go back to the street to get the 300 tenge for a temporary registration certificate. . . . If I had documents I would have got a job a long time ago.²³⁷

Members of high-risk groups also encounter problems in obtaining housing, either due to a lack of official documents, lack of financial resources, or discriminatory attitudes from landlords. Lack of official documents also prevents persons living AIDS from obtaining government-subsidized housing.²³⁸ In Shymkent, the director of the NGO Reliable Support, Valentina Skriabina, described the case of Farida M., an HIV-positive drug user who in 2002 had been detained by police in Shymkent and filmed on videocassette in pretrial detention. After the videocassette was aired on local television, landlords objected to Farida M.'s HIV status and ejected her and her brother from their apartment. At the time of Human Rights Watch's visit to Shymkent in August 2002, Farida M. had just recently, once again, undergone brief detention by the police. Police did not return her documents to her upon release from detention.²³⁹

Men who have sex with men
Men who have sex with men in Kazakhstan experience such severe stigma and discrimination that outreach to them has been extremely limited, resulting in little reliable statistical or even anecdotal information about the impact of HIV/AIDS on them.²⁴⁰ Government-run AIDS centers and harm reduction workers in general have only miniscule contact with this group²⁴¹ and readily acknowledge that there is little willingness among men who have sex with men to come forward for testing or preventive services. One small-scale 2001 study shows that the prevalence of sexually transmitted infections (STIs) among these men was very high, with over 50 percent of respondents indicating that they had contracted an STI in the preceding year; about 35 percent of those surveyed indicated that they consumed drugs, 9 percent of those via injection. ²⁴² Only 35 percent considered it necessary to use condoms to prevent transmission of HIV.²⁴³

Citing further evidence of the menace of rapid HIV transmission via sexual contact among this group's members, UNAIDS stated that rising levels of HIV/AIDS awareness have not had a positive impact on sexual behavior among men who have sex with men in prisons.²⁴⁴ Andrey Schmidt, the head of an NGO for gays, lesbians, and bisexuals in Karaganda, emphasized the severe stigma experienced by sexual minorities in Kazakhstan when he stated that HIV/AIDS prevention was a secondary preoccupation for his organization in relation to reducing homophobic attitudes in society at large. He added that in his estimation only 15 percent of members of the gay and bisexual community in Karaganda practice safer sex.²⁴⁵ The deep fear among members of this community prevented Human Rights Watch from conducting other interviews about this high-risk population. Some men who have sex with men declined interviews for fear of reprisal or disclosure.

²⁰⁹ United Nations Children's Fund (UNICEF), "Young People of Kazakhstan: Along the Path to a Health Lifestyle," pp. 87-88, and International Planned Parenthood Federation European Network, "Peer-Led Sexuality Education: Results of the Knowledge, Attitudes, Practices and Behaviour (KAPB) Survey," 2001, p. 21.

²¹⁰ Human Rights Watch interviews with Nina Wessel, Junior Professional Officer, UNAIDS, Almaty, August 13, 2002; Valentina Kniazova, Mothers Against Drugs, Almaty, August 14, 2002; and Leo Jacobs, general director, Decenta, Pavlodar, August 29, 2002.

²¹¹ Human Rights Watch interview with Alex Pasko, Temirtau, August 18, 2002.

²¹² Zhusupov, "Women, Youth and HIV/AIDS in Kazakhstan," paper presented at Expert Group Meeting "The HIV/AIDS Pandemic and its Gender Implications," November 13-17, 2000, Windhoek, Namibia [online],
http://www.un.org/womenwatch/daw/csw/hivaids/Zhusupov.html (retrieved January 15, 2003).

²¹³ Human Rights Watch interview with Alexander Kossukhin, UNAIDS, Almaty, August 15, 2002; and Dr. Isidora Erasilova, Almaty, September 9, 2002.

²¹⁴ Press conference organized by the National AIDS Program, Almaty, August 15, 2002.

²¹⁵ Human Rights Watch interview with Nina Wessel, Junior Professional Officer, UNAIDS, Almaty, August 13, 2002; and Lena Bondareva, director, Stentor, August 31, 2002.

²¹⁶ Human Rights Watch interview with Malika Jusupova, head, Red Cross National Society, Shymkent Branch, Shymkent, August 23, 2002.

²¹⁷ Human Rights Watch interview with Stop Hunger Now representatives, Karaganda, August 20, 2002.

²¹⁸ Human Rights Watch interviews with Nurali Amanzholov, August 18, 2002, and Dushanbe, October 16, 2002.

²¹⁹ As was the case when harm reduction services were first established, instances of health service discrimination against persons living with AIDS in the earliest years of the epidemic were reportedly widespread. Staff in most of the AIDS centers visited reported that both a growing knowledge about HIV/AIDS and their frequent interventions in cases of discrimination have helped to reduce the number of such cases.

²²⁰ A U.N. official in Almaty as well stated that persons living with AIDS persons are regularly refused dental care and surgery. Human Rights Watch interview, August 13, 2002.

According to the Public Opinion Research Centre's 2002 research on IDUs, only 23 percent of respondents indicated that they had utilized medical services - likely due to stigma and discrimination - during the previous six months. "Behavioral Surveillance Among Injecting Drug Users in Nine Cities of Kazakhstan..." p. 21. A 2002 CEEHRN study shows that on average 73 percent of IDUs in the former Soviet Union have no access to primary care from any source. Emilis Subata, "Injecting Drug Users, HIV/AIDS Teatment and primary care in CEE/FSU: Results of a Region-Wide Survey," presentation at "Health Security in Central Asia: Drug Use, HIV and AIDS" conference, Dushanbe, October 15, 2002.

²²¹ "Minutes of a meeting concerning the appeal of S.V. S...va to the deputy akim [mayor]," Temirtau, December 18, 2002, and Human Rights Watch electronic mail correspondence with Nurali Amanzholov, January 8, 2003.

²²² Human Rights Watch interview with Alex Pasko, Temirtau, August 18, 2002.

²²³ Human Rights Watch interview with Ira Sakaharova, Karaganda AIDS Center, Karaganda, August 19, 2002.

²²⁴ Human Rights Watch interview with Vika S., Temirtau, August 18, 2002.

²²⁵ Human Rights Watch interview with Nurali Amanzholov, Temirtau, August 18, 2002.

²²⁶ Ministry of Justice and Ministry of Health of the Republic of Kazakhstan, Decree No. 575, "Ob utverzhdenii Pravil meditsinskovo osvidetel'stvovania na viavlenie zarazhenia virusom immunodefitsita cheloveka" (On the Approval of Medical Rules on Testing for the Human Immunodeficiency Virus), June 11, 2002. The new testing guidelines, nonetheless, still allow for a wide scope for mandatory testing.

²²⁷ Letter to President Nursultan Nazarbaev, signed by 251 medical personnel, Almaty, July 23, 2002. The protective measures the doctors allude to in their letter include a short course of a combination of ARV drugs, sometimes called post-exposure prophylaxis, that has been shown to reduce the risk of HIV transmission among health practitioners who are stuck with an infected needle or have other potentially infective exposures. See, e.g., U.S. Centers for Disease Control and Prevention, Exposure to Blood: What Health Care Workers Need to Know [online], http://www.cdc.gov/ncidod/hip/blood/Exp_to_Blood.pdf (retrieved March 14, 2003).

²²⁸ The press conference was held in Almaty on August 15, 2002.

²²⁹ A letter written by the deputy director of the National AIDS Program responding to concerns raised by the approximately 250 medical personnel was published in Novoe Pokolenie (The New Generation) [Almaty], No. 33 (221), August 16, 2002, p. 8. Some health professionals attributed the letter to consternation about a drop in income from mandatory HIV testing; up until that time, it was alleged, a laboratory linked to the National AIDS Program was making a substantial profit off the tests. Human Rights Watch interviews with government and international organization AIDS officials in Almaty, August 15 and September 9, 2002.

²³⁰ Human Rights Watch interview with Dr. Ryskulbek S. Baikharashev, and Dr. Dauletbek D. Dzhumagaliev, Shymkent, August 23, 2002. The need for compulsory testing in the south is a also view shared by some harm reduction workers, who also make the case that southern society is "not ready" for voluntary testing.

²³¹ Human Rights Watch interviews with Valeria Gourevich, Almaty, August 15, 2002, and Dr. Gulsara R. Suleimanova, September 12, 2002.

²³² Tuberculosis, unlike HIV, is airborne and highly contagious. Human Rights Watch attendance at meeting between Nurtai E. Abulmazhinov, deputy director of the medical department of the penitentiary committee of the Ministry of Justice, and medical staff of Colony 159/17 tuberculosis hospital, Karaganda province, September 6, 2002.
Misguided perceptions in the medical community about the transmission of HIV/AIDS and prevention approaches have produced even more radical suggestions from AIDS center professionals in the recent past. When a legal aid group conducted a study of HIV/AIDS-related legislation in the spring of 2001, for example, the head of one AIDS Center was at that time contemplating the possibility of isolating persons living with AIDS in the general population. Human Rights Watch interview with Andrei V. Andreev, director, Legal Initiative, Almaty, August 21, 2002.

²³³ Human Rights Watch interview with Leila V., Republic Scientific-Practical Center of Medico-Social Problems of Addiction, Pavlodar, August 29, 2002.

²³⁴ Human Rights Watch interview with Marat S. Pavlodar, September 2, 2002.

²³⁵ Human Rights Watch interviews with SauliA.., Shymkent, August 24, 2002; Inna Zvereva, Temirtau, August 18, 2002; Nurali Amanzholov, Temirtau, August 18, 2002; and many others.

²³⁶ Ibid.

²³⁷ Human Rights Watch interview with Valentina S., Pavlodar, August 31, 2002.

²³⁸ Human Rights Watch interviews with Nurali Amanzholov, Temirtau, August 18, 2002, and Dushanbe, October 16, 2002.

²³⁹ Human Rights Watch interview with Valentina Skriabina, Shymkent, August 23, 2002.

²⁴⁰ UNAIDS reports that MSM are in practice inaccessible, and that they do not use AIDS services for reasons associated with stigma and coercive preventive practices. A number of HIV cases have nonetheless been documented among this group, including clinical AIDS cases. Kossukhin, "HIV/AIDS in Central Asia," October 16, 2002. Also U.N., "Support to National Strategic Plan Against HIV/AIDS, STIs and Injecting Drug Use," p. 3.

²⁴¹ The AIDS Center in Karaganda, exceptionally, maintains constant and collaborative contact with an NGO for gays, lesbians and bisexuals, Zhemchuzhina (Pearl); and the Almaty AIDS Center has also done more outreach work with men who have sex with men.

²⁴² UNAIDS, "Study of HIV/STI Behaviour Risks of MSM (men having sex with men) and Their Awareness Level of on [sic] Ways of Transmission and Prevention," 2001, p. 6.

²⁴³ Ibid, pp. 2, 11.

²⁴⁴ Kossukhin, "HIV/AIDS in Central Asia," October 16, 2002.

²⁴⁵ Human Rights Watch interview with Andrei Schmidt, director, Zhemchuzhina (Pearl), Karaganda, August 17, 2002.