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Rapid Responses: Rapid Responses published:
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AIDS and stigma
- Ediriweera B.R., Desapriya (20 July 2004)
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AIDS education for both HIV-negative and HIV-positive youth
- Maria de Bruyn, Susan Paxton (30 July 2004)
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The Athlone house on the rock
- Edwin M. Mapara (3 August 2004)
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The ABC approach with a double 'C' for Africa
- Edwin M. Mapara (5 August 2004)
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Ediriweera B.R., Desapriya, Research Associate-Department of Pediatrics University of British Columbia-V6H 3V4
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AIDS has become the worst pandemic in human history, eclipsing even the Black Death of the 14th century. According to a new study by UNAIDS, the Joint U.N. Program on HIV/AIDS, 38 million people worldwide have contracted the deadly disease, 5 million in the past year alone, the largest increase ever recorded (1, 2). There is no excuse for the failure to tackle this epidemic; there is ample evidence of effective ways to respond to the disease, to treat and prevent it. What is lacking is the national and international political will to do so. Many epidemiological characteristics of the spread of HIV have been shared between borders, and therefore intervention approaches can also be transferred, adapted, and refined to fit new environments. Interventions that tackle the barriers posed by stigma and discrimination, however, for the most part have remained neglected throughout the world, making it imperative to highlight what has been done and what has worked (3). Sexually transmitted infections have always been imbued with stigma due to their association with behaviors considered deviant or immoral (4). Similarly, societies have historically reacted with fear to disfiguring, debilitating, and fatal diseases and have translated this aversion into discriminatory actions against the infected. Despite a dearth of research on the topic, it is increasingly becoming acknowledged that “effective prevention and treatment strategies require an understanding of cultural frameworks, including of stigmatization” (4). The social stigma associated with some of those labels discourages governments from taking action and people from getting treatment (5). It even prevents individuals from getting tested. Reducing the stigma associated with HIV/AIDS in many countries will require greater involvement of civil society organizations, businesses, the entertainment industry, religious leaders, and the medical community. As respected opinion leaders, they can play an effective role in reducing harassment of groups promoting positive attitudes towards people with HIV/AIDS and creating an enabling environment for prevention efforts. AIDS can be prevented. Thailand was on the brink of an epidemic a decade ago, but an aggressive program to fight the disease -- with public education and the distribution of condoms -pushed the rate of HIV infection to 85 percent below its 1991 infection level. Money is needed, but more than that, attitudes must change. Stigmas associated with the disease must be lifted. In countries where the stigma-taboo have ended and examinations and treatment are available, infection rates have dropped dramatically. Growing poverty among those who have not benefited from Asia, Africa and Latin America’s inclusion in the global economy are also driving increased injection drug use, and few countries have mounted an effective response to the drug-related HIV epidemic through either peer education or syringe exchange programs. Many groups whose behavior places them at high risk for contracting HIV/AIDS, such as men who have sex with men, commercial sex workers, and injecting drug users, are stigmatized and abused, and in some cases their behavior is criminalized. Such a harsh environment and denial of their rights discourages members of these groups from seeking HIV/AIDS prevention and care programs, for doing so could expose them to mistreatment or even criminal sanctions (3). A hallmark of any comprehensive AIDS prevention strategy should include mass marketing of condoms and sex education as part of the internationally recognized ABC's of prevention (abstain, be faithful, use a condom). Studies have shown that condoms are at least 90% effective at preventing HIV transmission, if used correctly and consistently (3). Effective prevention efforts will have to both acknowledge and challenge cultural mores which often prevent frank discussion of issues surrounding sex and drug use, and will need to overcome the stigma that surrounds the disease and encourages its spread. (1). The Joint United Nations Programme on HIV/AIDS, Report on the Global HIV/AIDS Epidemic, 2002 (2). The Joint United Nations Programme on HIV/AIDS, Thailand: Epidemiological Fact Sheets on HIV/AIDS and Sexually Transmitted Infections, 2002 (3). Heffernan, J., Best practices for preventing AIDS. J. of Ambulatory Care 2004; 27(2) 190-1 (4). Goldin C.S., Stigmatization and AIDS: Critical issues in Public Health. Soc. Sci. Med. 1994; 39(9) 1359-66 (5). De Bruyn, T., HIV related stigma and decriminalization the epidemic continuous. Can HIV AIDS Policy Law Rev. 2002; 7 (1) 8-14 Competing interests: None declared |
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Maria de Bruyn, Senior Policy Advisor Ipas, 300 Market Street, Suite 200, Chapel Hill, NC 27516, USA, Susan Paxton
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Dear Editors, In her editorial concerning HIV/AIDS in developing countries, Prah Ruger states that public policies must create conditions that enable individuals to exercise their ability to live the life they value.1 In this context, it is important to note that HIV/AIDS education for young people rarely, if ever, acknowledges that the youth being educated may already be HIV- positive. Do programmes expect HIV-positive youth only to have sexual relations with, and marry, other HIV-positive persons? If so, is this a fair expectation, given that many discordant couples with access to condoms and antiretroviral therapy have remained discordant for years and gone on to have HIV-negative children? It is estimated that 6000-7000 young people are infected daily and that 11.8 million young people are already living with HIV around the world.2 Given the reality in many countries, we need to begin adapting curricula, IEC and life skills materials to address the needs of both HIV- negative and HIV-positive youth simultaneously. HIV/AIDS education must go beyond messages advocating abstinence, limiting the number of partners and condom use. Teenagers need guidance in considering questions with far- reaching implications, e.g., How can I check my HIV status for sure? Would I be willing to date or marry a person who is HIV-positive or has herpes? At what point should I tell or ask my partner about his/her (or my) HIV status and how would I handle the news that my partner has a serostatus different from mine? If I am part of a serodiscordant couple, what would my options be for having children (e.g., prevention of perinatal transmission, assisted reproduction, adoption)? As HIV/AIDS becomes a more chronic – yet still infectious – disease, educational efforts for youth must address such topics in a sensitive manner based on a gendered, cross-generational and human rights approach. Involvement of HIV-positive young people in both curriculum design and delivery is a key first step to ensure greater sensitivity. 1. Prah Ruger J. Combating HIV/AIDS in developing countries. BMJ, 2004:329:121-2. 2. Department of Economic and Social Affairs. World youth report 2003. The global situation of young people. New York: United Nations, 2004 Maria de Bruyn, Ipas, 300 Market Street, Suite 200, Chapel Hill, NC 27516, USA; e-mail: debruynm@ipas.org Susan Paxton, APN+ Consultant, 31 York Street, North Fitzroy, Melbourne, Victoria, Australia 3068; s.paxton@posresponse.org Competing interests: None declared |
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Edwin M. Mapara, Postgraduate student, London School of Hygiene and Tropical Medicine WC1E 7HT
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In 1990, while the world was wondering what had hit us in terms of the HIV/AIDS epidemic, Athlone hospital in Botswana was building a 'house' that has stood the test of time. The house was built on a solid rock. The house was built on information, education and communication unit (FOUNDATION) and counselling unit (SLAB). The four walls were clinical care unit (WALL), pastoral care unit (WALL), home based care unit (WALL), and orphan care unit (WALL). The integrated training and project management unit (ROOF) completed the house, that has been the birth of many national programmes. The house was occupied by a medical officer, nurses, social workers and the hospital advisory committee comprised of lay community members - mostly teachers, village politicians and village elders. The house was built on faith and Hope is vital (HIV) to making a difference for Botswana. The Athlone house was branded '...too ambitious', '...radical', '...controversial','...a dream!' and other terms that have come back to haunt the visiting consultants from the West who evaluated it on behalf of the government. In 2000, the Athlone programme was documented as "one of the best practices' in Botswana. In 2002, that is 12 years later, consultants from the West saw it fit to replicate the programme nation-wide, as one of "...the HIV/AIDS Prevention, Care and Support intervention strategies". What a missed opportunity! The recent 2003 Second Generation Sentinel Surveillance Report shows Athlone, based in the Lobatse district, to be in an area where the HIV prevalence is one of the lowest at 32%, in a country where the HIV prevalence in the 22 districts ranges between 26% and 52%. Developing countries must stop moaning and replicate their best practices. The solution to the African HIV/AIDS epidemic is in their hands, with the Africans themselves. It involves risk taking and moving away from the 'traditional' ways of doing things. Africans and locals in developing countries should have more confidence and faith in themselves. Who knows better than the locals on where to get the best river-sand for building the house in the village? Naturally, the local villager, who knows the footpaths to take and the dangerous bushes to avoid. When the house is built, the village folks can sit back and admire their handy work of the community house that they built and own. Competing interests: Pioneer of the Livingstone AIDS Awareness Programme, Zambia (1989); Pioneer of the Athlone AIDS Awareness Programme Botswana (1990) and Pioneer of the Athlone Health Resource Centre Botswana (1999). |
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Edwin M. Mapara, Postgraduate student, London School of Hygiene and Tropical Medicine WC1E 7HT
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I strongly support this statement by a previous contributor that, "Effective prevention efforts will have to both acknowledge and challenge cultural mores which often prevent frank discussion of issues surrounding sex and drug use, and will need to overcome the stigma that surrounds the disease and encourages its spread." In Africa there are many cultural issues that still need to be addressed surrounding sex. Having worked in sub-Saharan Africa in the field of HIV/AIDS, some issues that we discussed included: 1. Wife/Spouse inheritance. 2. Blood-letting by mouth sucking done by the traditional doctors. 3. Blood-letting to 'release bad blood' done by some churches that share communal needles. 4. Communal enema to 'cleanse the system' done at least once a year. 5. Husband not allowed to have sexual intercourse with menopausal wife as he may fall ill. Wife has 'old bad poisoned blood as not coming out'. The man is encouraged to look for a younger mistress who still has 'fresh blood' as she still has her monthly periods. 6. Culture or belief that only women can be barren, in cases of infertility in a marriage. The brother to the man (husband) is allowed to 'help' the brother sexually by impregnating the sister-in-law so as to 'carry on the name of the family'. 7. When a wife is very pregnant, in the last few weeks, she might not be able to 'perform her marital duties in the blankets', so a sister-in-law or young aunt is sent by the elderly women 'to attend to the sexual needs' of the man to prevent him from 'wandering'. 8. Incest is rampant in some tribes in the name of culture. 9. When a child is born, the 'traditional birth attendants (TBA)' smear the joints of the newborn with the mother's vaginal blood so as 'to make the growing joints and bones strong'. 10. Breast milk has several functions apart from being a food. It is a 'medicine'. It is expressed in the ear to 'treat' otitis media; expressed on the genitalia of the baby to stop him/her pulling the penis or fiddling with the vagina respectively. This culture has been used to explain the 'failed' or poor uptake of the Prevention of the mother to child transmission of HIV programme (PMTCT). 11. If a child dies within a few weeks or months after birth, the woman is advised to become pregnant as quickly as possible to 'replace the lost one'. 12. Death of an infant. When the child is buried, the mourners do not disperse until one of the ladies becomes pregnant. There is random sexual intercourse. The 'sexual activity' ends when one of the ladies announces to the elder women that she (the lady) has missed her menses or has 'not seen the moon'. That is when the mourning crowd is 'officially' dismissed. 13. Some churches have 'high risk sexual practices' that predispose to HIV transmission. 14. Insertion of traditional medicine into the vagina by the penis of the medicine man. Used in 'treating' infertility. The medicine man has to 'open the mouth of the womb' by depositing the herbs there with his penis. 15. Girls coming of age in the initiation camps are visited by an 'uncle' at night to test and taste them if they have been 'taught properly on how to look after their future husbands in bed'. 16. Polygamy. 17. In some tribes, a woman has to 'prove' that she can conceive and hence must bear a child before marriage or the lobola (bride-price) is paid. Believed that a 'marriage without a child is not a marriage'. 18. Very important male guests or visitors in the home are given a 'chosen' woman for 'entertainment'. 19. Culturally, 'good, respectable women' do not talk about sexual intercourse and do not initiate discussions around the penis or vagina. That is the role of the man. 20. Sexual intercourse with a virgin or young girl is treatment for AIDS as it 'cleans the bad blood' is another controversial prescription by traditional doctors! The list is endless. These are some of the 'practices' we picked up and in some cases were punished for, for having entered the 'inner circle' or 'no-go' area. If we could address Cultural issues as much as we address Condoms, the ABC approach with a double 'C' for Africa will have made a big difference. AIDS IS IN THE VILLAGE. THE SOLUTION TO THE CULTURAL ISSUES THAT PROPAGATE HIV/AIDS TRANSMISSION ARE IN THE VILLAGE WITH THE ELDERS, THE HOLDERS OF TRIBAL CULTURE AND TRADITION. Competing interests: None declared |
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