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Straight talk about a deadly disease

Can you be infected with the AIDS virus by sharing a towel? Can you get it if a wild cat bites you? If you get an HIV test, is it confidential? These are just a sampling of the calls received by volunteers of the Allan Vincent Smith Foundation (AVSF) Help Line since it came into service a year ago today.

Says Foundation board member, Mr. Paul Dean, "We've received a total of 112 calls since we began this service but, really, the numbers are immaterial. If we can save just one life through the information we provide, then it makes it worthwhile.'' There is a feeling among volunteers, however, that there has been a sharp increase in the number of calls since the movie `Philadelphia' was shown here.

One of the perhaps surprising facts to emerge from the Foundation's breakdown on calls received was that there have been slightly more calls from worried females than males.

In an ominous trend, more and more women have reason to fear the spread of AIDS. One woman, reports a female volunteer, rang up to say an ex-boyfriend had died of AIDS. Should she tell her current boyfriend? And should she get tested? The answer to both of these questions, of course, was "Yes''.

Mention of this brought up the fact that many people still seem to be unaware that the new Public Health Act, 1993, legislates that every person is obliged to divulge knowledge of any communicable disease -- not just AIDS -- to their partner. And, says Mr. Marc Thomas, another board member, "If you know you have the HIV virus or AIDS, and you have sex with someone and don't tell them, that is attempted murder.'' With no cure for AIDS in sight, the thrust of the Foundation is one of education, offering advice and support services.

There are still, says the Foundation, "myths and misconceptions'' about the disease. The installation of a confidential Hot Line, manned by trained volunteers, was seen as a vital tool in offering accurate and factual information.

Prior to the start of the service, 25 volunteers were trained to work on the Help Line, on the basic facts regarding HIV infection and AIDS, and to be able to direct callers to the appropriate referral services, by using both local and overseas resources. There are now over 30 volunteers, who have so far worked a total of 250 evening shifts, with a training session for a further 20 planned for this month.

It is important, say the volunteers, to develop `listening skills', to set people at ease when they call, to reassure them that their call is totally confidential and that the volunteers themselves are "unshockable''. Many people, they point out, have no one talk to about their fears, so sometimes, a person may just ring up for a chat. This is especially true, for instance, when someone is waiting for the result of an AIDS test, when a person's life has been placed in limbo while they await the outcome of that test.

"A lot of the calls are about symptoms,'' says one volunteer. "Some people get terrified if they have a cold that won't go away, or if they get a high fever, or constantly feel fatigued. They've read that these are some of the warning signs, so our advice would be that if any of these symptoms are very severe, or have lasted more than a week, they should, in any case, seek medical attention.'' Stressing that the function of the Help Line is to merely offer advice, he goes on, "We never tell people what they should do. We offer factual information and then advise the options available to them. Our job is to encourage people to make their own decisions.'' Mr. Thomas says that volunteers, who all have to undergo a rigorous training course based on a 96-page manual before they are allowed to join the Help Line programme, are totally non-biased and non-judgmental.

"It would never do for them to allow their personal views to influence the answering of any questions. This would defeat the purpose. The `hot-line' has to stick to facts.'' Some questions, such as those quoted above, may seem naive, or even preposterous but, says Mr. Dean, all the questions asked represent a genuine concern or fear on the part of the caller.

The enquiry about the wild cat, for instance, arose from an article the caller had read about a feline form of AIDS -- they were able to reassure her that there was no connection with the strain of AIDS found in humans.

The most frequent enquiry, says the volunteers, is how long can the AIDS virus be in the body before it is detected? The answer to that one is that it is now believed it can take up to six months for anti-bodies to show up in the bloodstream.

Another frequent area of concern is where a person should go to be tested for the virus.

"People are understandably worried about the confidentiality of the test,'' says Mr. Thomas. "If a person is tested at the Health Department, the information remains between that person and their health care giver. The advantage of going through the Health Department is that they provide pre-test and post-test counselling, which is vitally important.'' Because of the stigma that still surrounds AIDS, many people are worried that even if a test proves negative, the very fact that they have been tested might affect their insurance, and how the insurance companies react. While this is not necessarily a problem in Bermuda, there have been cases in the US where people have been refused insurance, simply on a suspicion.

Then, points out Mr. Dean, there is the reverse problem, if a person refuses to undergo an HIV test. "There is a feeling among some sectors of the community that the person may get fired -- or fail to be employed in the first place!'' The Foundation advises callers that the only way complete confidentiality can be guaranteed is to go through the Health Department -- "if it is done outside that framework, the test will go through a lot of `outside' hands.

People should also remember that if they are tested privately, there is no support system in place, to get them through a very difficult time.'' Some of the stories the volunteers hear can indeed be harrowing. There was the individual, for instance, who was violently forced by an HIV-positive man to have sex with him. What should she do now, she wanted to know.

Another sad case was the man, recently diagnosed as having HIV, who desperately wanted his girl-friend to have his baby "as a sort of remembrance of him, or a way of leaving his mark on the world,'' they explain.

There have been calls from pregnant women who are concerned about their unborn babies. Quite often, volunteers are able to give practical advice to callers with the virus who are homeless, or have lost their jobs.

"It seems incredible, but some people are abandoned by their families when it's found they have AIDS. They're thrown out, and have nowhere to turn. But they don't have to be alone and helpless. We are able to direct them to people and organisations who will take care of them,'' says Mr. Thomas.

Younger callers are particularly concerned about `safe sex' questions. Mr.

Dean says, "The Foundation would point out that the only really `safe sex' is celibacy. Practical abstinence is the safest way, but if celibacy is not an option, then we would encourage safer sexual practices, such as no exchange of body fluids and no sexual activity without the use of condoms.'' For the volunteers working on the Line for the past year, there have been a wide range of emotions involved.

One volunteer, who is the mother of three daughters, says that the experience has made it easier for her to discuss sexual matters with her children.

Several have found that, once it is known that they work on the Help Line, people tend to pull them aside and start asking AIDS-related questions.

Perhaps the most naive (and offensive) remark came from a young lady, who on being told that `Mr. C' was a volunteer, asked "Oh, how long have you had AIDS then?'' Or, he adds, the other common assumption is that because he is associated with the Foundation, that he is a homosexual.

"The other night, I was at a party and this girl said, `What's it really like, being gay?' I told her, `I've no idea!' Because, as it happens,'' he says with a smile, "I'm not a homosexual. My girlfriend fully supports me in working as a volunteer.'' Asked why he had joined the Help Line, Mr. C. replies, "I felt I had to do something to help. There are many of us, of all ages and backgrounds who are extremely concerned about the spread of AIDS in Bermuda, and the general ignorance that still surrounds the disease. I get a little annoyed about the way people are stereotyped in Bermuda -- if you help out, you must be gay!'' In his opinion, it is vital that the community stops making these kinds of judgements: "HIV and AIDS is now affecting every sector of Bermuda -- black, white, men, women and children. It's time that everyone started working together and to help one another as best we can, because we are facing an epidemic here.'' The AVSF Help Line is operated from Monday to Friday between 5.30 p.m. and 9 p.m. Normally, two volunteers are on duty at any given time. The absolute confidentiality of every call is guaranteed. Their telephone number is 295-0002.

Of 112 calls received: 57 callers were female; 55 were male; 48 requested general information on HIV/AIDS (inc. psychological/social and legal issues) 33 requested testing information; 31 wanted information on HIV/AIDS symptoms; 15 requested information on support services.

CAN I HELP YOU? -- A volunteer answers a call for help on the Allan Vincent Smith Help Line. The service celebrates its first anniversary today.