POSTING 58: FEAR AND HIV TESTING 


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Frerichs, R.R. Fear and HIV Testing.

SEA-AIDS Network, November 12, 1998.

R.R. Frerichs Posting

Fear is often bought up when mention is made of HIV testing. Some fear that communities will harm HIV infected persons, causing them to be fired from their job and ostracized from social life. Others fear that persons carrying the virus will commit suicide, feeling the perceived burden of their disease.

Still others fear that HIV infected persons will knowingly transmit the disease to intimate partners, behaving in a criminal way. While barriers to testing would certainly address some of these fears by hiding the virus from view, doing so is self-defeating since the microbe becomes easier to spread. So what should societies in high prevalence Asian regions do to address such fears, recognizing that widespread HIV detection will not otherwise occur? One approach is normalization.

To reduce public fear, HIV infection needs to be viewed not as a sin, but rather as a disease which is similar, with one main exception, to forms of cancer, hypertension or diabetes (i.e., normalizing the disease). The one exception of course, is that HIV can be transmitted from one person to another by the exchange of blood or sexual fluids. Once HIV is detected, however, this exception can be addressed by potential sexual partners and in medical settings, thereby preventing further transmission.

I have recently been communicating with a colleague (Mr. Laurie Maund) who works with an NGO in Thailand that trains Buddhist monks on ways to become more involved in HIV/AIDS management. Many of his observations relate directly to the notion of normalization, and should prove useful to those who accept the public health value of early detection programs and are looking for practical ways to reduce public fear. With his permission, I have rearranged some of what Mr. Maund wrote me about the situation in Thailand and added a few headings and comments here and there (see below).


From Laurie Mund, Thailand

THE PROBLEM

A few years ago, this [their approach which appears next] would not have been possible. Despite all this excellent progress, there is still a lot of stigma and misunderstanding. I know young women who are rejected by their fathers and families, seen grandparents who try to take grandchildren from positive mothers, heard stories of villagers who, through fear of infection, refused to help an HIV+ man who committed suicide when they could have saved him. There are still children for whom school doors are closed and young adults whose employment application forms are stamped rejected. All because of this stigma. I was recently in the northeast where the epidemic is just revealing itself and where the only knowledge that people have of HIV/AIDS is what they have heard from campaigns or through the media. The fear there is terrible and the stigma brutal.

SOLUTION OF OTHERS

From my experience, awareness programmes are very unbalanced and seem to emphasise mainly prevention giving little or no attention to living with HIV/AIDS. Old notions of AIDS being an ugly disease with death as the only reward still remain strong. This awareness of living with HIV should be strongly promoted in education campaigns and more effort should be made to break through all old prejudices that prevail.

PROPOSED SOLUTION

I do see changes taking place, however, and, though they may be slow, I am encouraged enough by what I see to continue with the struggle. The project I am working with, the Sangha Metta Project, trains Buddhist monks so that they can have an active role in HIV/AIDS management. The training includes seminars and workshops and whenever these are held, we always have PHA present as speakers. In addition, participants (monks) are taken to visit projects run by PHA and during these visits, the PHA are provided with a budget to prepare a meal for the monks. This serves two purposes. The PHA are given the opportunity to perform merit, which is very emotionally uplifting for them, and secondly, the monks cannot refuse a meal which is offered. This helps monks overcome any trepidations or fears they may have of eating food prepared by PHA or mixing with PHA. After the monks have completed their training, they run meetings and workshops in their communities using their temples as a base. The target groups on these occasions are village members - school children, housewives groups, village leaders, etc. The same procedure is followed, i.e. inviting PHA to attend as speakers and participants. At a recent two day workshop for housewives, 10 PHA attended. Participants were not told that there were PHA amongst them. Everyone took part in the activities together, helped to prepare food and ate together. At the end of the second day, the workshop dealt with living with PHA. Participants were shown videos and listened to talks by health workers and monks. They were then asked to express their feelings about living with PHA. By this stage, most of the participants had a very open attitude and when it was revealed that some of their members were HIV+ the scene was very emotional. Housewives held and hugged the HIV+ participants, expressed their sorrow and concern about their condition, pledged their support and shed a lot of tears. There was a lot of bonding and some of the housewives have now set up peer groups and support groups in several occasions with school children, college students, village leaders, etc. which reinforces the need for PHA to come public about their condition.

Today is Loy Krathong, a traditional Thai festival that is celebrated in a big way with parades and floats. We have arranged a float for PHA and the beauty queen will be a young HIV+ woman who is a member of a PHA group in Chiang Mai. Sixty members of PHA groups from every district in Chiang Mai will be marching in the parade and the entertainers, dancers, musicians and singers, are all HIV+. The response from the authorities to our participation has been very supportive and the media has pledged to give the event full coverage. Several friends of mine, both Thai and foreign, none of whom are HIV+ have asked if they can join the parade to show their support.

THE ADDENDUM [sent to me on Nov. 7] 

The Loy Krathong Parade has now passed and the reception given by the spectators made all the time and effort more than worthwhile. The entire route, about 3 km., was lined on both sides with thousands of people. A recorded message announced that the passing float represented the Chiang Mai Network of People Living with HIV, that all the participants were HIV+, as was the beauty queen, who looked absolutely stunning. Applause erupted spontaneously at spots along the way and cameras flashed non-stop. One of the most moving moments occurred when a man came out of the crowd, announced that he was HIV+, and asked if he could join our parade. Participants broke their ranks, mingled with the spectators, handed out condoms and information in living with HIV, as well as addresses for further information. At the end, they received a special commendation award from the judges. Spirits were raised higher than the heavens on that night and years of prejudice and discrimination were washed away by the sea of enthusiasm. More was achieved in the space of 3-4 hours than has been achieved in years. And there are more parades to come.

Laurie Maund

Sangha Metta Project


Perhaps others in Asia have similar experiences that they can share on ways to promote normalization, thereby opening the door to programs that feature early detection with testing and efforts at the individual level to reduce viral transmission.

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