POZLife: Life from the Infected and Effected point of veiw.

‘We didn’t realise the enormity’

Posted by pozlife on June 7, 2006


By Jane Dreaper

Health correspondent, BBC News

Twenty-five years ago, a group of doctors in California filed a report about a mysterious problem affecting gay men.

Men holding hands

HIV/Aids was first identified among the gay community

It was the first time that the fatal disease of the
immune system – or Aids, as it came to be known – was brought to the
attention of the medical community.

The initial medical report amounted to just two sheets of A4 paper – and just several hundred words in total.

When the American doctors in California reported five
cases of previously healthy gay men suffering a bizarre immune
disorder, they had no idea of the significance of their discovery.

Map of current worldwide HIV infection rates

Professor Andrew Saxon was among that team, and is still
working in immunology: "We actually called this Gay Related Immune
Deficiency. Thank God that name didn't stick.

We thought it was something related to the gay lifestyle – and we had no idea it was a virus

Professor Andrew Saxon

Timeline: 25 years of Aids

Have Your Say

"We thought it was something related to the gay lifestyle – and we had no idea it was a virus.

"We were specialists in immunology, rather than public health, and so we didn't realise the worldwide enormity of this."

'A certain destiny'

The five men mentioned in the original report all died within two years of its publication.

Professor Saxon said: "I knew them all personally because I helped take care of each of them.

"They were the end stage of HIV and we had nothing to treat them with."

Tombstone - the 1980s Aids awareness campaign

The 'Don't die of ignorance' campaign was used to alert the UK public to Aids

As the American doctors filed their report, similar cases were emerging in France.

More cases emerged in countries around the world over
the next few years, leading to public awareness initiatives such as the
UK's campaign in 1987 which used images of tombstones and icebergs.

It was a potent reminder of how a condition – initially labelled a gay cancer – was a potential threat to everyone's health.

The announcements warned: "The virus can be passed
during sexual intercourse with an infected person… If you ignore
Aids, it could be the death of you – so don't die of ignorance."

Gary Wall was by then more than familiar with Aids – because people he cared about were dying from the disease.

"Friends were being diagnosed at an alarming rate – altogether 32 close acquaintances and friends have died of Aids."

Gary was infected with HIV during his first gay sexual
encounter in 1982, and began to suspect he was carrying the virus as
the 1980s progressed.

He was diagnosed with Aids in 1995.

Feelings of guilt

"Having an HIV diagnosis is quite serious in itself – but there's a definite end to having Aids," he said.

This virus isn't going away

Dr Simon Portsmouth, St Mary's Hospital

The paper that described Aids

"When you're told you have Aids, you know there's a certain destiny.

"I was told that I would not live to see the millennium, and not to prepare for my 40th birthday, which was in 2002."

In fact, Gary is now 44. He has a number of voluntary
jobs – including work for a leading Aids charity, the Terrence Higgins
Trust – and he enjoys a good quality of life.

Although initially sceptical about the way in which the
anti-retroviral drugs were launched in a blaze of publicity 10 years
ago, Gary acknowledges the way they have transformed care for HIV
patients – and how they helped him, once he decided to start taking

Gary has responded to HIV by becoming an expert patient
– he meticulously researches all aspects of his treatment and manages
his condition as carefully as he can.

He sometimes feels guilty that he's alive when so many friends have died.

"We certainly didn't know that by the beginning of the
21st century we would be able to be treated for this – and it would
become a chronic condition as opposed to a terminal condition," he

Young 'taking risks'

If the infection is picked up early enough, people
getting an HIV diagnosis now will often be told they can enjoy a normal
life expectancy – and their medication might be as basic as two pills a

That's the good news. But early hopes that the virus behind Aids could be eradicated haven't been fulfilled.

In 1984, United States government scientists announced they had identified HIV.

They were predicting that in two to three years they would find a vaccine to prevent Aids.

But even now, some experts feel it's best not to hazard
a guess as to when there might be an HIV vaccine. There's intensive
research, but no magic breakthrough yet.

One of Britain's busiest HIV clinics is at St Mary's
Hospital in West London. Soothing classical music plays in the
background on the day ward there, where patients have blood tests and
sometimes transfusions.

Dr Simon Portsmouth, one of the consultants, said:
"About half of our patients are gay men. It seems that some younger gay
men are probably taking more risks.

"And many other patients are from African communities in London. Again, this seems to be increasing."

HIV is a virus with relatively few genes – but it mutates rapidly as it spreads through the body.

Dr Portsmouth is concerned that many cases among those
two key groups of people go undiagnosed. And resistance to the
anti-retroviral drugs is a problem too.

"About a third of the patients we look after have drug resistance," he said.

"And about 10% of people in London have drug resistance before they even start their treatment."

Twenty-five years on, HIV is very much still with us.

But as someone who began working in this field when
there were daily deaths on the wards, Dr Portsmouth tries to remain

"This is one of the few areas of medicine where things really have changed in the last 10 years.

"The depressing thing is that this virus isn't going
away. More people are taking risks and people are still coming to us
far too late and are untreatable."

Gary, on his way to his next appointment at St Mary's, paid tribute to the doctors there for keeping him alive.

I asked what message he'd give to people reading about HIV.

"Don't get HIV," he said. "I'm managing to survive but it's not always pleasurable and I sometimes wonder what it's all for.

"Don't put yourself in this position."



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