When the drugs do work

Jane Elliott
BBC News Online health staff

Gus has been HIV positive for 17 years

Just a few years ago Gus Cairns was preparing to die.

He is HIV positive and after a particularly bad bout of illness doctors told him he had only three months to live.

He planned his own funeral and wrote his obituary.

To test the health of the immune system, doctors measure the number of specialist CD4 cells in a cubic millimetre of blood.

A normal count in a healthy, HIV negative adult can vary, but is usually between 600 and 1200. Gus's count fell to just 10.

Future

Now, five years on, the future is a viable prospect, and Gus, Editor-in-Chief of Positive Nation the UK's only generic sexual health and HIV/Aids magazine is planning his retirement and pension. And his CD4 count is up to a much healthier 350.

He hopes that through the inspiring stories featured in his magazine and by telling his story people will come to realise that HIV is not always a "death sentence".

Gus, 47, credits combination therapies for his new lease of life.

I do not think HIV is going to be the cause of my death directly Gus Cairns

"These days the whole world has changed for us.

"We are still facing an uncertain future, but it is not to do with the length of life we have, but to do with the quality of life.

"People with HIV will probably not live average life times, but their lives will probably not be drastically reduced.

"When I think of the future, I think of what I am going to do about a pension and my savings and where I am going to be when I am 60."

Survivor

Gus, who has been HIV positive for 17 years, said that living with a "death sentence" had taken its toll on his health.

"I was part of a generation whose life was affected by having a supposed terminal illness, but who didn't then die.

"It was difficult to rebuild my life.

"It is a huge rite of passage. It is the Lazarus effect. You close yourself down and it was only after I recovered that I realised that psychologically I had prepared myself to die.

"I became withdrawn and did not want to go out and my boyfriend was worried about me."

It also coincided with the death of Gus' dad and he spent six months on Prozac.

"There is an element of post-traumatic stress disorder. Someone said that at this time being HIV was like living through a war. People around you were dropping like flies and you did not know who was going to be next.

"Somebody said recently that Gus Cairns is a survivor.

"It is as if you have a whole lot of catching up to do. It is as if you have fallen to the bottom of a ladder and then you have to start climbing it again.

"I still get annoyed that my mid-30's were effectively taken out of my life. The part of my life when I should have been building my career ladder was taken out," he said.

Toll

Gus said that although people focused on the number of people who died from Aids, the true toll of the disease must also include the number of people who suffered from depression and anxiety because of their diagnosis.

He said that he had suffered few physical side effects.

"I have been particularly lucky, but the long term side effects are a worry.

"Most people worry about the effect the drugs will have on their cholesterol levels.

"But I do not think HIV is going to be the cause of my death directly."

Gus explained that statistics show that patients with HIV have a greater risk of getting osteoporosis or cancers than people without HIV.

He said there was a 50-fold decline in the number of Aids deaths in Europe, but that there were still vast numbers of deaths in poorer countries where the combination drugs were unavailable, or too expensive.

Others deaths were of people who had been diagnosed too late, or had contracted other illnesses such as Hepatitis C, which can cause problems for HIV positive patients.

Outlook

Jack Summerside, at the Terrence Higgins Trust, agreed that better treatment had improved the outlook for people with HIV.

"Since effective drug treatment for HIV has been available in the UK, deaths because of HIV have fallen from about 1700 a year to fewer than 400.

"For someone who is diagnosed with HIV today, this means a very different outlook on life compared to 10 years ago.

"Most of those who die because of HIV in this country are people who do not find out they are infected until it is too late to benefit from the drug treatments.

"This shows the importance of knowing as soon as possible whether you are infected if you have been exposed to HIV.

"Medicine is still a long way from finding a cure, and taking the drugs properly is vital for them to work effectively."