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In 1987, an HIV diagnosis was catastrophic. Until March of that year, no drugs proven to prolong the lives of HIV-positive people had been approved for use, and thousands worldwide had already died after contracting the virus.
In the UK, the loudest media coverage of the HIV/AIDS epidemic came from tabloids spreading scare stories as fact, which is why a lot of people actually believed you could catch HIV via a toilet seat or by sharing a cigarette. This, of course, was dangerous in its own right: with so much misinformation out there, it was difficult for people to access the information they really needed.
Lord Norman Fowler, then Conservative health secretary, saw to it that this changed. In 1987, Fowler and chief medical officer Sir Donald Acheson persuaded Margaret Thatcher's government to send a leaflet titled "AIDS: Don't Die of Ignorance" to every household in the UK. The booklet laid out—too graphically, by the standards of some in Thatcher's cabinet—exactly how you get HIV and how to protect yourself against it.
They supported the campaign with a TV ad that looks a bit like a spoof horror trailer if you watch it now: a pair of hands engraving "AIDS" into a gravestone while John Hurt does a scary voiceover. But there's no doubt it was effective: it terrified people into talking about and practicing safe sex, and other countries—including America, whose government hadn't conducted any national campaign by that point—started to follow the UK's lead.
Nearly 30 years later, Lord Fowler still does his bit in the fight against HIV/AIDS. In 2011, he chaired a six-month investigation into how the UK has dealt with preventing and treating the virus, and in 2014 released the book AIDS: Don't Die of Prejudice after traveling to nine countries around the world and finding HIV/AIDS sufferers treated with ignorance, prejudice, and intolerance.
During the filming of VICE UK's new documentary, CHEMSEX, we sat down for a chat with Lord Fowler. Below is that interview edited for length and clarity.
The "AIDS: Don't Die of Ignorance" advertisement released in 1987
VICE: To start, can you give us a rundown of what you did and the challenges you faced in raising awareness about the AIDS epidemic in the 1980s?
Lord Norman Fowler: The first thing you've got to remember about the 1980s—and the late-1980s particularly—is that although there was a very big increase in the number of people with HIV, there were no drugs and no way of actually tackling the issue. HIV was a death sentence, and therefore you had hospital wards full of young men, mainly, who were dying. The only thing you could really do was try to prevent new people from becoming infected.
Public education was obviously a big thing—communicating that this was how you got HIV, that you could avoid it by taking pretty sensible precautions. As far as drugs were concerned, again, if you contracted HIV from shared needles, the obvious thing to do was provide clean needles. And that's exactly what we did, but it wasn't without controversy, because many people said, "OK, you give them clean needles, surely that's just encouraging drug taking and crime." In 2011 we did a select committee report on this. I asked the chief constable, "Has there been any increase in crime because of the needles?" Not one of them said there had.
And what about the sexual side of things? What were the key challenges in getting across the sexual health messages?
What we in the health department thought we had to do was get a direct message to the public. Again, not everyone approved of that message. I don't think Margaret Thatcher was that keen on the message. But my view was that if we got over a direct and punchy message, then people would take notice. The leaflets we sent to every household in the country were entirely explicit about how you got HIV, and again there were some complaints about it, but these policies had the impact of bringing down HIV and sexual disease rates. The tragedy is that the lesson hasn't been learned: that you do need good prevention if you're going to tackle not just HIV, but sexual disease generally.
Yeah, last year we saw a record high of men who have sex with men (MSM) being diagnosed as HIV positive in the UK.
I think the oomph has gone out of the campaign. People are complacent. There's the view that "we've now got the drugs—it would be a pity if you got HIV, but, you know, no big deal." That's an attitude that should be challenged. We don't put anything like enough emphasis on prevention in this country. The figures we got out of the government were that they were spending £800 million [$1.27 billion USD] to a billion pounds [1.5 billion USD] a year in treatment and care for those with HIV, and that the department of health were spending, centrally, £4.9 million [$7.4 million USD] [on prevention]. We said, "This is ridiculous, you've got to spend more." So what do they do? They cut if further, to £4.5 million [$6.8 million]. I mean, you can't expect anything other than an increase [in cases] if you don't take prevention seriously.
What's happening now with chemsex is that all the issues you dealt with separately—the drugs, the needle issue, and the sexual health issues—are all interrelated. How do you think that changes potential preventative strategies?
The short answer is that you've got advertising agencies who look at this, who study it, and then make proposals. My campaign [in the 80s] of slightly shocking people and saying, you know, "If you don't do this then you're going to die," clearly that isn't the campaign you'd run now. There's no neat answer to your question, except to say that you've got to measure the position as it is today and make the appeal that is relevant today, particularly to young people.
What would you say to those who argue that sex education is redundant in an age where people are exposed to sex so early through technology—where, for gay men on apps like Grindr, it takes something like four to six conversations to be introduced to chems, and six to eight conversations to be introduced to injecting?
It's not just sex education, but also relationship education, and you need to start that at a relatively early age. My belief is: if you give people knowledge, then most of them will make the right choices. If you don't give them knowledge, you're going to find that a lot of them might make the right choices, but that a lot of them will not. We called the original campaign "Don't Die of Ignorance" because people were ignorant of how terrible the consequences of their actions could be. The effects aren't as terrible [now], and that is one of the challenges, but I've not yet met anyone with HIV who thinks it's just a matter of no consequence. It is a matter of consequence: it has all manner of impacts on your life, and that needs to be communicated.
In the 1980s it was "don't die of ignorance," and the subtitle of your latest book is "Don't Die of Prejudice." Do you think that, even in the UK, we've still got a long way to go until the LGBT community feels...
Secure? Yes, I think we do. Fortunately we don't have to go as far as some countries I've been to, like Uganda or Russia, where gay people are persecuted and prosecuted. So obviously the position here is better than that, and we've made some rather important improvements and reforms—equal marriage being one of them—but if you ask me, "Do you think that homophobia has disappeared in this country?" The answer is, "No, of course it hasn't."
What do you think of the argument that there's a sort of self-destructive streak within the gay community? Obviously drugs have been combined with sex for years, both by gay and straight people, but the way drugs are taken now in the chemsex scene seems like a step beyond all that.
I think these things go a bit in waves. When we started, injecting heroin was a big issue, and then it's sort of evened out. This isn't a question that's possible to answer in a few words, but I think that, in a sense, people are not as concerned about HIV as they were. The idea that you can deal with all this with one pill is, to a certain extent, true—but there are big, big disadvantages to that [way of thinking], which we don't spell out. And because we don't spell them out, people might think, 'Perhaps we can experiment a bit more, going down this particular drugs street.' It's more complicated than that, but this is what we should be looking at, because without putting in any effort, you're not going to win.
I suppose the difference is that, in the 80s, the campaign was for blanket awareness, whereas with chemsex it's a problem that affects a very specific community. How do we turn this into a public awareness issue? Is it a public awareness issue?
It's a very good question. There are a lot of local, slightly disjointed campaigns, which I think would be made a lot stronger if they were done against a background of a general knowledge of what was taking place and what the dangers and the difficulties were. But then you're quite right: you should actually have your local campaigns—your specific campaigns—on the back of that.
You dedicate a significant portion of AIDS: Don't Die of Prejudice to current trends in the gay community, including chemsex. During your research, what did you find most interesting or concerning?
What I find most concerning is the level of prejudice and discrimination toward gay people, against lesbians, against transsexuals, against people who take drugs, and so on. That's by far the most important thing that I write about in the book. And the tragedy is that, in many ways, the prejudice is getting worse, not better. You know, obvious places like Russia, Uganda, Nigeria, Ukraine—a whole range of countries where the position now is actually worse than it was ten years ago.
It's a big human rights issue, but it's also a public health issue. If your aim is to get people coming forward to be tested—and remember, half the people with HIV in the world don't know they have HIV, or are certainly not diagnosed—an enormous barrier to getting tested is the prejudice and discrimination, because you're not going to go forward and get yourself tested if you think there's a prospect that you're going to get prosecuted or ostracized.
But then you have London, which is so much more tolerant than any of those places you listed, where there's more intravenous drug use in the gay community than ever before. Why are there more and more people falling into what the British Medical Journal have called a "public health priority"?
I mean, this is a minority of the gay community. I think this is half the trouble with this debate—that people talk about gay people taking drugs, and then you get this impression that all gay people take drugs and are all into chemsex, which is rubbish.
It is a minority, absolutely, but perhaps not an insignificant minority. And there are these studies—you know, the Lambeth School of Hygiene, the London School of Tropical Medicine—that suggest that the increased sexualized drug-use is having a direct impact on HIV in collections and diagnoses.
I'm not dismissing it, but I think it's worth putting it into context, because if you're not careful you can stigmatize everyone who's gay—which is ridiculous. But I'm certainly not dismissing what's happening. What's happening should be a matter of concern for anyone who is running any policy in this area. You must just try to keep up to date and try to find the right messages for today.
How does it make you feel personally that, in many cases, there's a more flippant attitude toward HIV, especially among young people? I mean, in making this film we've seen it—lots of people who don't care, and actually a community of people who are actively on the hunt to contract HIV, because once they get it they can just take the pills and don't have to worry about getting it any more.
I think that is disastrous. It's disastrous in the sense that it is, again, an aspect of ignorance, because if you contract HIV it isn't consequence free. Even when you've got your anti-retroviral drugs it's not consequence free. And everyone who has got HIV says exactly the same to me: you have all kinds of issues that will come up—mental issues, social issues, all kinds of issues come as a result. To be flippant about it, and to take no care, is just absolute folly. So, somehow, one has got to fight against that.
And that comes back to public education.
Yes. The question is: what are we going to do to challenge that casual attitude? We've got to give it a lot of thought and put a lot of effort into challenging that attitude, because it's in the public interest that we do so; it's in the interest of, particularly, young people that we do so. There's not one solution that you pick; there are a range of policies that you have to follow. But somehow you've got to get HIV and AIDS back onto the agenda, and you've got to get public education back onto the agenda as well.
Thank you very much.
If you or anyone you know is seeking advice about HIV/AIDS, visit the website of the Terrence Higgins Trust.
Chemsex support is available in most sexual health clinics. 56 Dean Street offers one-to-one chemsex support; visit chemsexsupport.com. Antidote (London Friend) offers drug and alcohol support for the LGBT community. Call 0207 833 1674.
CHEMSEX is released in the UK on Friday, December 4. To see a full list of theaters showing the film, click here.
CHEMSEX will be released on DVD and On-Demand in the UK on January 11.
To read the rest of the articles from our Chemsex Week—a series exploring the people, issues, and stories in and around the world of chemsex—click here.