Aids 25 years on

Terrence Higgins was the first Briton officially to die from the disease. His partner says that we are still doing too little, too late...

Rupert Whitaker said that health professionals needed to think beyond simply providing drugs for HIV patients.

His boyfriend, Terrence Higgins, was the first British man to die from Aids, and became the focus of campaigning when the Terrence Higgins Trust charity was set up in his name.

Speaking from his London home on the eve of the 25th anniversary of the medical discovery of the condition, Dr Whitaker said: "In this country, there is a lack of joined-up thinking and an attitude of 'just take the pills and you'll be fine', which is quite frankly rubbish." He added that though people were managing their condition with drugs, they were unable to tackle the psychological consequences of living with HIV.

"The potential of retrovirus drugs is being squandered, and treatment has to be tied in with prevention. After 25 years, the NHS still has a closed mentality and the top priority has to be to get a multi-disciplinary approach to join up the dots within clinics and between clinics and communities."

Globally, 3 million died from Aids in 2005 and only one in five people who need life-saving drugs actually get them. The UN announced last week that more than £20bn will go into tackling the disease by 2010.

Poignantly recalling his lover, Dr Whitaker said: "Terrence had a sleeveless pink sweater which looked terrible on him, but it is one of my abiding memories and brings out all my fondness for him.

"Once he went into hospital, it was very quickly downhill from there. He was never himself again and we didn't know what was going on. I wasn't even respected as having a relationship with him and was told to read the medical journals to find out what he died of. There is at least some nominal respect for gay relationships now."

The Terrence Higgins Trust was born, he said, "out of love and also real grief". Dr Whitaker also developed Aids and was not expected to survive: "I managed to hang on for a long time and the first anti-Aids drugs came in just in time."

Determined to join the ranks of those researching the disease, he spent over a decade in the US where he gained a double doctorate in psychological and biological medicines. The development of anti-retroviral drugs a decade ago was a turning point. "I know it is what saved my life. But thinking that they are the only answer is one reason the epidemic is continuing.

"There is a great deal of responsibility that is not being taken by governments and a lot of hot air being produced," said Dr Whitaker, who was recently shortlisted to join the Government's expert advisory group on Aids. "Keeping the enormity of the problem in mind is hard but very necessary. HIV is destroying whole societies in developing parts of the world."

While the disease has not been forgotten in the UK, its profile has been somewhat neglected. In 2004, there were 7,275 new reported cases, almost double the number reported for 2000. A third of the estimated 65,000 people living with HIV in the UK are unaware they have the disease.

Dr Whitakersaid his life had become defined by the death of Mr Higgins: "The experience was life-changing and deeply traumatic. But no matter how difficult, you can always find a way to make a rose grow out of the rubble. My whole life has been channelled to making a difference. First, as an immunologist and, now, in behavioural medicine where I am trying to break down the barriers that exist."

While prejudice has lessened, it still lingers on, he said. "Last year, I had an opportunity to start a family with somebody and went to the Chelsea & Westminster Hospital, where I was told there was a question of child welfare because of my sexuality, and advised to go to Spain where they wouldn't ask any questions."

The constant threat of living with a fatal disease has a profound effect on any sufferer's outlook, he said. "It is like a mouse being toyed with by a cat - can you escape it or is it going to get you this time?"

Speaking out: What leading figures said yesterday about Aids...

Kofi Annan, UN

Aids is "the greatest challenge of our generation, with more new infections, deaths, women and girls infected than ever before."

Annie Lennox

"This is beyond an emergency, this is just insanity. This is a genocide of a preventable disease that we are talking about."

Stephen Fry

"Enough is never enough in the fight against HIV. We must all do more and do better and do it now to beat this pernicious virus."

Bill Clinton, ex-president

"Aids is a hot political issue in a lot of places where people are uncomfortable talking about how it's communicated. Denial only makes it worse, everywhere."