‘Medical triumph’ of prolonging HIV positive lives

When the first case of HIV was diagnosed in Los Angeles in 1981, science had no answers to the serious and incurable Human Immunodeficiency Virus.

No one could have foreseen the millions of people worldwide who would become infected by this global epidemic.

Thirty years on however, and the virus is no longer a death sentence.

Thanks to improved drug treatments, which can control the infection, people diagnosed with HIV in the early stages can now expect a relatively normal life span.

Thirty-seven year old Kampamba, who lives in Bristol, found out she was HIV positive 15 years ago. She thinks she was infected by a boyfriend who did not know he had the virus.

The drug regime she follows to control HIV is “fantastic”, she says, because there are no side-effects although she sometimes feels tired.

Her greatest joy is her 15-month-old son, who is not infected with HIV.

“I did everything I could to prevent the infection passing to him. The ARV (antiretroviral) drugs helped that process and I also refused to have a normal delivery just to make sure.

“And I didn’t breastfeed him either, which could have helped to transmit the infection to him.

“Knowledge is power – if you know what you are doing with HIV, you can lead a full life.”

Mark Barham became HIV positive 14 years ago after a one-night stand with a man who then revealed to him that he had Aids.

He started ARV therapy four months later, and has been taking them ever since. But initially the drugs were not kind to him.

“I wasn’t good at taking them because they gave me a head to foot rash, night sweats and three months of diarrhoea. I lost two and a half stones in weight.

“Now my body is used to them and there are no side effects.”

Mark says he feels healthy. He ran a 10k a few weeks ago and did the 10k walk for life as well.

He is training as a counsellor and buddy for people who have just been diagnosed with HIV in Reading – something he says he would have loved when he was first diagnosed.

The key to keeping people with HIV alive for longer are the antiretroviral drugs. They are not a cure, but they can stop people from becoming ill for many years.

The drugs have to be taken every day for the rest of a person’s life to keep the amount of HIV in the body at a low level.

This stops any weakening of the immune system and allows it to recover from any damage that HIV might have caused already.

The combination of several anti-HIV drugs in one pill, called combination therapy, has been used to treat HIV patients since the 1990s and has improved treatment dramatically.

Dr Ian Williams, from the British HIV Association, says the side effects are still there but they can be controlled.

None of the drugs are perfect but they have definitely become more tolerable, and there are fewer problems with toxicity, failure and resistance.”

Gus Cairns, from NAM, National Aids Manual, which provides facts and information on HIV and Aids, says treatment of HIV “has been an incredible medical triumph”.

“In the early 90s, HIV was an incurable disease which was killing fit young people.

“People are scared of the virus in different ways now. It’s a shameful thing to have, rather than a scary thing. People are not scared of dying any more.”

But antiretroviral drugs are only at their most effective if the infection is diagnosed early, before symptoms appear.

Any delay in starting treatment could be crucial. Health Protection Agency figures show that three out of five of HIV positive individuals that die are diagnosed too late to gain the most health benefits from their treatment.

Dr Ian Williams said: “We want to get people diagnosed earlier so that they can start therapy at the right time.

“There is a move to do this – and we should acknowledge that we need to increase testing in GPs’ practices and hospitals.”

In the UK, the fact there have been fewer deaths from Aids has resulted in a steady rise in the number of individuals living with HIV in recent years.

The Health Protection Agency estimates that by 2012, diagnosed and undiagnosed cases will reach 100,000.

Last year there were 3,800 people diagnosed with HIV who got the infection in the UK – and this number has doubled over the past decade.

So although HIV has become a manageable chronic disease, Dr Paul Cosford, executive director of health protection services at the HPA, says it is still a concern.

“Unfortunately in the last few years new diagnoses of HIV infections acquired within the UK are on the upward turn in men who have sex with men and the 30 year anniversary is a timely reminder that this infection is still very much an issue.”

So is the prevention message failing to get through to certain communities?

Gus Cairns, from NAM, says the UK is not as good at HIV prevention as other countries.

“There’s something we’re not quite getting right. It may be something to do with soft-pedalling on messages about HIV.

“We did take our eye off the ball on prevention. Not enough money has been put into it.”

Yet hard-hitting public awareness campaigns like those which were broadcast on TV in the 1980s featuring an iceberg and the voice of John Hurt, are clearly unaffordable in the current economic climate.

They sent out a terrifying message which fed some of the stigma still surrounding HIV and Aids today, says Deborah Jack, chief executive of the National Aids Trust.

“Fear and ignorance made the stigma enormous but although much more is known about the disease now and treatments have improved, there is still a lot of ignorance around.

“The majority of people don’t have stigmatising attitudes, but a small minority do.”

And fear of that stigma can stop people from being tested, from talking to their family or partner and from seeking help.

We need to start talking about HIV again, she says.

“So often HIV is invisible.”

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