I start by drawing the chamber’s attention to my entry in the register of interests, where it is listed that I am a member of the Terrence Higgins Trust. The trust is named after Terrence Higgins, who was the first person to die of AIDS in the United Kingdom, succumbing to the disease in London’s St Thomas’ hospital aged just 37.
I am very grateful to all members who have decided to stay in the chamber to listen to or participate in the debate, which is designed to mark world AIDS day, which is tomorrow. I am particularly grateful to HIV Scotland for all the work that it has done ahead of tonight’s debate and, indeed, ahead of tomorrow’s lunchtime reception in Hemma, which members are most welcome to attend.
Having cornered several friends across the chamber and encouraged them to speak tonight, I know that we are in for an excellent debate. For Labour’s part, Anas Sarwar will pick up the global and international development dimension of the battle against HIV and AIDS. Monica Lennon will discuss issues to do with HIV services for drug users, and Daniel Johnson will talk a little bit about Waverley Care here in Edinburgh and some of the work that the University of Edinburgh is doing to find a cure for the disease.
That leaves me with plenty of scope to reflect on how we got here. I have had a long-standing interest in HIV/AIDS—an interest that predates my experience of knowing dear friends who are HIV positive; being at ease with my own sexuality; and understanding the history of the lesbian, gay, bisexual and transgender community’s relationship with the disease. My interest also predates all the fundraising efforts on our television screens to tackle the spread of AIDS, as it savaged, and continues to savage, sub-Saharan Africa.
I am very much a child of the 1980s, having been born in 1981, which was the year in which AIDS was first clinically observed. It was not called that at first. The working title, so to speak, was 4H—named after the four groups most likely to get it: heroin users, homosexuals, haemophiliacs and Haitians. That was replaced with GRID, which stood for gay-related immune deficiency—a name which, fortunately, had a very short lifespan.
We are all aware of the UK Government TV campaign of the time, which warned of a disease that was spreading—a disease for which there was no cure. There was a terrifying advert that started with an explosion and ended with a giant tombstone with the word “AIDS” engraved on it and the slogan “Don’t die of ignorance”. A leaflet version of that advert was posted through every letterbox, on Margaret Thatcher’s command.
I personally recall watching Mark Fowler try to tell his mum and dad in “Eastenders” that he had a virus—that it was just one of those things; that it did not mean that he was ill, just that he could get ill—but all they could hear was “AIDS” and all they could think of was the death sentence that came with it.
What I did not, and could not, appreciate, though, was how HIV/AIDS was affecting this dear city that I now have the great privilege to represent. We cannot, and should not, forget that Edinburgh was, during the 1980s, the AIDS capital of Europe. If Edinburgh was the capital, Muirhouse was the epicentre. It was a community with deep-rooted poverty, appalling houses and mass unemployment that was exploited by drugs, and the heroin brought HIV. A study of around 230 drug users from Muirhouse in the 1980s showed that 52 per cent of them were HIV positive. Sharing needles was literally a game of Russian roulette, as was brought vividly to life for all of us who have seen Irvine Welsh’s “Trainspotting”.
Such a density of cases forced the Scottish AIDS Monitor into existence, and soon support services that we now know as Waverley Care were established. In 1991, Milestone house was opened as a hospice for people dying of AIDS. On Friday night, I attended a Waverley Care event to raise funds to keep it going, 25 years on. The difference now, of course, is that it has evolved from caring for those who are dying to assisting so many more people in living their lives positively.
In preparing for tonight’s debate, I took some time to look properly at some of the press cuttings from the 1980s. It is hard now to grasp the outrage that was sparked when Princess Diana was photographed holding the hand of a man who was dying of AIDS in Canada. How brave and groundbreaking it was of her to say, in 1986:
“HIV does not make people dangerous to know. You can shake their hands and give them a hug. Heaven knows they need it.”
She seemed to know instinctively that what was needed was compassion and understanding, not fear and ignorance. How applicable that is to so many of the problems that we face in the world today.
The first debate in the House of Commons on HIV/AIDS took place in November 1986—serendipitously, 30 years ago almost to this very day. Having read the full Hansard report, I would like to share some excerpts with members.
The Secretary of State for Social Services, Norman Fowler, was the first to speak. He told members that AIDS was a “serious threat”, and highlighted that there were 565 cases in the UK and 284 people had died. He said:
“The likelihood is that it is a problem for at least the next 10 years, probably for the rest of the century ... Even if no one else becomes infected from tomorrow, there are still the estimated 30,000 carriers”.
Little did he know that, just five years later, there would be 10 million people living with HIV. Today, the figure stands at 36.7 million people.
Sir David Price MP rose to ask for some clarification from the minister. He asked whether the disease could be transmitted through saliva or tears. What about breast milk? Was it safe to hug, to kiss, to cry or shake hands? He concluded:
“There is no ... evidence to treat them as lepers, although some elementary precautions should be taken.”
Anna McCurley MP—the Tory member for Inverclyde, no less—suggested that homosexual surgeons, dentists and even people working in the food handling industry should withdraw from their jobs and be compensated by the Government for doing so in order to reduce the risk of transmission. My dear friend Gavin Strang, who served as the Labour MP for Edinburgh East for 40 years, was the first to demand specific help for prostitutes such as counselling, alternative work, free condoms and dedicated healthcare. Those are just four of the demands that he saw as necessary, having seen at first hand the disease take hold of Edinburgh.
Frank Dobson warned that the threat facing the heterosexual community was underplayed. He said:
“That is partly because of the ... presentation by The Sun and other newspapers of AIDS as a gay plague. The people responsible for that sort of reporting must bear a great deal of the blame for helping heterosexuals to believe that AIDS was no threat to them.”—[Official Report, House of Commons, 21 November 1986; Vol 105, c 800, 818, 860.]
I could read from the report of the debate all night, but I suspect that the Presiding Officer is keen for me to conclude at some point soon, not least to let other members have a go. I will tweet the link to the full report of the debate so that folk can read it for themselves.
Fast forward 30 years to today, and we have made vast progress. HIV is now one of the most scrutinised viruses in the world, and we probably know more about its transmission, spread, management, treatment and prevention than we know about any other disease, yet we have no vaccine and no cure—but we are close. Medical advances have given us antiretroviral therapy, which has transformed the lives and life chances of people who are living with HIV. Testing is critical, because early detection combined with early adoption of antiretroviral medication means happy, healthy lives. In fact, someone on antiretroviral medication may now have a viral load that is so low that the disease becomes undetectable again, and the risk of transmission to others is so small as to be statistically unquantifiable.
An HIV infection is no longer a death sentence. People who are living with HIV today say that it is not the infection that is the hardest thing to live with—it is the stigma, and the fear of how people will treat them. Fear and ignorance are two concepts that were the drivers behind how this country spoke about and dealt with HIV and AIDS in the 1980s, and they still exist today. However, we know that they can be defeated by education, whether that is formal education for pupils in schools; the information that is given to those working in saunas; informal conversation, compassion and understanding; or nights like this and days like tomorrow.
In marking world AIDS day this year, I conclude that, while so much has been done to tackle HIV, there is so much more to do. I pay tribute to all those individuals in HIV Scotland, THT and Waverley Care who have made tackling HIV and AIDS their life’s work.