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2005-02-01-Hard choices about honesty
Despite former minister Chris Smith's honesty about living with HIV, many people still keep their positive status to themselves or lie about it, and feel they have good reason to.
Campaigners hope Mr Smith's announcement will encourage more people with HIV to be open about it, while educating the wider public that the condition does not prevent people leading a full life.
Although attitudes have changed greatly since he was diagnosed 17 years ago, and the reaction from others can be hugely positive, many people withhold it from family, friends and lie on official documents.
HIV charity Terrence Higgins Trust says some people have been sacked, evicted and refused access to services such as fitness centres and dentists surgeries, just for being HIV.
And it is not just the fear of discrimination that holds people back.
HOW HIV CAN BE PASSED ON
Fact: Blood, semen, vaginal fluids including menstrual blood, breast milk
Fiction: Saliva, sweat, urine, through skin, through air
Fact: Sex without a condom, injecting drug use, mother to baby, organ transplant
Fiction: Kissing, holding hands, sharing a drink
"I've told nearly all my friends and I'm very open about it but I haven't told my parents," says Trevor, who is in his 50s.
"That's not because I have any shame about it and I know they'd be very supportive, but I think they're at an age where they don't understand and think it's a death sentence.
"Every time I got flu or a cold, they'd worry I was going to die with Aids and that's not the case provided you live a healthy life. I don't want them to have that pressure, so my decision is about protecting people I love."
Not all relatives are sympathetic anyway, according to Positively Women, a charity which supports women with HIV. "Disclosure by a woman to her male partner can lead to violence because of the accusation that she has brought HIV into the household," says director Elisabeth Crafer.
"We try to encourage couples to be tested together but often women will have no knowledge of their status until they're diagnosed ante-natally and then they have a difficult decision to make about disclosure."
Disability legislation governs people who are receiving HIV treatment and outlaws discrimination in areas such as employment, education and access to services. This year it will be extended to cover people from the moment they are diagnosed.
But the change comes too late to protect Ben, a carer who found himself on shifts excluded from his colleagues when his union and employer, a national charity, found out about his HIV status. He thought his complaint about this was not being taken seriously and eventually left.
Legally there is no compulsion for people to tell their employer but some decide to when they begin their treatment. But the progress in medication, which can keep people alive for many years, has empowered people with HIV to make the decision of disclosure on their own terms, says Ms Crafer.
Yet some attitudes and working practices have not caught up, sometimes creating a dilemma about telling the truth.
For example, all people entering the US who have HIV must obtain a special visa waiver in advance, which is marked in their passport.
Some people have cancelled holidays because they didn't get the paperwork in time, despite applying for the visa two months before they went, says Lisa Power of the Terrence Higgins Trust.
Many people are unaware they need a visa, so lie on arrival or are turned away. Others are put off applying because they fear refused entry, hostile questioning or future discrimination, she says.
So they make a false declaration - which can be punished by a life ban - and may even leave their HIV treatment at home in case it is found in their luggage. The US Embassy says the waiver is routinely issued and the policy is due to public health and financial concerns.
Life insurance is another tricky area. Although companies have begun to provide cover for people with HIV, some people still lie about their status so they can get a mortgage.
There is no obligation to tell a GP and some people have been refused dental treatment after volunteering their status.
Research by the BBC in 2003 found nearly one in four dentists which were contacted refused to commit to treating a person with HIV, despite no risk of transmission if standard safety procedures are followed.
With all these disincentives to be open about HIV, honesty can be even harder than it seems.
A selection of your comments appear below. Thanks for contributing to the debate.
In 1989 the stigma of HIV/AIDS was so intense that when my very own mother was diagnosed with it was kept so secret that not even all my siblings were told. After incredible hardships my beloved mother died three years later under a veil of total secrecy. I am proud to see so many educational and support groups out there teaching people and helping people know that nobody has anything to be ashamed of because of their HIV status. I wish that my family and friends had these resources available to us 16 years ago. Maybe then my mother's death would have been viewed in a much more honourable way.
Craig M. de Thomas, NYC, USA
I have been HIV+ since I was 22, and I am coming up to my 24th birthday next week, My friends, family, GP and employer all know my status and I have had a great response of them all, its just been a matter of explaining to them exactly what it is and what to expect, and how I am not going to die next week. I still get a negative response of some people, but they have just not been educated about HIV, and not being educated about HIV and not knowing the facts mean that they could be the next one to get it.
Pete, Manchester, UK
Religion should truly stand up and take its blame for the AIDS crisis in Africa. The Pope continues to tell the world that using condoms (aka safe sex) is a sin and should be discouraged. Not everyone can live the catholic dream of only remaining with your first partner for life and having endless children. Religion has stigmatised the disease and made people take unnecessary and uneducated risks.
I maintain the hope that I might be able to work normally one day, but sometimes I'm too exhausted to spend more than a few hours awake - the treatment is no picnic and if you've ever been very ill [with HIV/AIDS] you might never fully recover enough to hold down a job. Living in near-poverty is bad enough without being told to get a job and weather discrimination - how typical of Blair's government to pick a defenceless section of society to appeal to! disaffected Tory voters that want to feel they're doing something excitingly aggressive at election time - have a pogrom.
I have been HIV+ for 12 years, am married and have two healthy children aged 5 and 2. Provided you take sensible precautions (c-section, don't breast feed) the risk of transmission from mother to baby can be as low as 1%. With regard to honesty - I have been open with family and friends but haven't told my employer because I don't think they need to know or my dentist because I am too embarrassed and worried about confidentiality. I would prefer to be more open because having had two beautiful healthy children I think I am a positive role model, but now I worry about protecting them from taunts in the playground.
It's all very well for the Chris Smiths of this world to "bravely" reveal they are HIV positive. However, what people seem to forget is that these people are so high profile that there is not a dentist or doctor in this land who would refuse to treat them for the fear of the publicity it would generate. The typical citizen, however, will continue to be treated in the same atrocious way. Sadly, I now expect a lot of people with HIV will now admit they have it and suffer for doing so.
By all means let us encourage those who might have the illness to come forward for treatment, but we neglect at our peril the more important message, that risky lifestyles and behaviours leave people vulnerable to a disease without a cure. Without this as our emphasis tens of thousands of our citizens will wonder why no-one told them of the dangers, but for them it will be too late.
John North, UK
Isn't it sad that we treat people with HIV and AIDS as though they are criminals. Receiving a blood transfusion and sex are not crimes as far as I am aware. Drug abuse is but those people need help. It would be nicer if we knew more about it then I don't think we would all be so afraid. I can not blame people who are HIV positive for hiding it. I think I probably would too.
Emma, Winchester, UK
I must reveal my HIV status to US Immigration? The answer is reciprocity: I think we must require all Americans hoping to enter the UK to have a visa if they suffer from any form of long-term serious illness. This includes obesity, dementia, and severe personality disorders, which all of 'public health and financial concern'. If we say nothing about this prejudice (and racism: this questioning would be illegal of a US citizen), it won't go away.
Ronald A. Fisher, UK