Derek Bodell stepped down as chief executive of the National Aids Trust (NAT) in December. He tells Martin Flynn how things in the HIV sector have changed, and warns of a current lack of shared vision
 Photos: Nikki Kastner |
I’ve been at NAT for nine years and I need a change. We’ve just completed a strategic review at NAT which means that the new chief executive, Deborah Jack, is coming in with a new mandate and a new opportunity. I’m going to work for a New York-based consultancy called Global Health Strategies, where one of the main things I’ll be working on is to develop a climate for the delivery of HIV and TB vaccines.
I grew up in Leicester and originally trained as a social worker. I worked in Newcastle for 10 years and moved to New York in 1986. I worked in a poor black area in Brooklyn doing child protection; about 60 per cent of our work was HIV-related. I also volunteered with Gay Men’s Health Crisis, the first HIV community group.
When I came back to the UK in 1988 I took up a job with the Health Education Authority (HEA) on their new Aids programme.
NAT was created in 1987. At that time the Department of Health (DoH) was having some difficulties with the HEA. Norman Fowler had enormous influence in HIV campaigns at that time and leaflets about Aids were delivered to every household in the country.
The HIV sector was growing phenomenally in the late 1980s. There were lots of new community organisations being set up, many coming out of the lesbian and gay movement. NAT was put together by the DoH. It received early support from Robert Maxwell, so I suppose you could say that NAT was born out of a strange alliance between Norman Fowler and Robert Maxwell!
NAT’s board was made up of the great and the good, lord this and lady that, and the intention was to raise money for HIV organisations, to raise public awareness around HIV and Aids and to commission research. The remit was very wide, but it had very limited resources.
My experience of working with NAT while I was still at the HEA was of an organisation that was very busy all over the place. It had a huge public profile. You couldn’t pick up a newspaper in those days without seeing an Aids story, most of them hysterical and negative.
NAT realised that the best way to deal with this was to try and make the general public more aware of the facts and main issues around the disease. They countered some of the negative stories about Aids by placing information ads next to the negative articles in the national press. Remember that this was a time when people living and dying with HIV were slated in the tabloids and harassed in their homes.
One of the things we tried to do was make a distinction between HIV and Aids. Aids had become such an enormous fear and to most people at that time Aids equated death. Many of the banner headlines screamed ‘Aids Kills’ in 50 point type. We tried to make a distinction between someone living with HIV and someone with an Aids diagnosis.
Many saw NAT as imposed by the government rather than growing out of the HIV community. What has changed during my time here is that there is now a lot of respect for NAT and the fact that it now works collaboratively with many other organisations. Partnership-working across the HIV sector has become a priority of how we do our business.
One of my regrets is that we weren’t able to use the £1 million we got from the Diana Memorial Fund back in 1998 more effectively. We were given two years of revenue funding and we responded by expanding dramatically and it very nearly sank us. The Diana Fund grant wasn’t ongoing and after we got it, our ability to pull in other funds was much tighter. Anyone leaving an organisation would like to think it had more money in the bank, but NAT is not a rich organisation despite what many think.
One brief of my successor is to develop much stronger campaigns, to increase political activity and engage with politicians, while having good analysis and sound evidence for what we’re saying and producing.
One thing we’re researching is the degree to which HIV stigma is related to homophobia and racism. We may have to broaden our stigma campaign to tackle issues around homophobia and racism. We’re also running an ad in the Economist focusing on the experience HIV positive people have in disclosing their status when they’re being interviewed for a job.
We’re also pushing the HIV vaccines agenda, and should be working more on the possibility of cheap microbicides. We’re talking about developing a community advisory board on vaccines in this country, to reflect more clearly the HIV community views.
The issue of the number of HIV organisations in this country is a difficult one. You have to remember that the HIV sector is still only 20 years old and that many local groups came out of real needs in a time of certain death from this disease. The fundamental problem is that there isn’t a shared vision about what we want to achieve and how best to get there.
You get the THT view which is that a single all-singing, all-dancing organisation is the best way forward. But the results of the review that NAT has just carried out with organisations around the country do not agree with this.
I think that THT has worked well in bringing service providers together, and it’s been absolutely vital for many of the regional organisations. One of the criticisms is that THT has got away from the community and become like an American not-for-profit business, though that’s also one of its strengths.
NAT has looked at a merger with THT. Our board looked at all the options. But one of the things which was very clear was that we have a very different culture to THT in the way we work. We’ve also had a resounding ‘no’ coming back from the consultation we’ve just carried out with our stakeholders.
The next major shift in the HIV sector will be less about merger and more about organisations coming together with a clear commitment to a vision we all share. We face much broader challenges in this country over the whole sexual health agenda and the degree to which HIV is going to be seen as a priority. A way forward that we back is a new vehicle for bringing organisations together - perhaps an overall UK HIV Foundation.
There is however a recognition that genuine meshing together is rare. In Britain we have lots of specialist organisations at a national level: the UKC, NAM, the African HIV Policy Network, BHIVA, the Medical Foundation for Aids and Sexual Health, Crusaid, Sigma Research, all of whom fulfil specialist roles and have their own networks. They have solid funding from the people they work with, have developed confidence over the years, and in many cases have international contacts and reputations.
Given the different cultures and specialities of these organisations you need to ensure that their trustees take responsibility for ensuring that they come together on the right basis. There has to be some shared vision about what we actually want to achieve, and it has to be on the basis of respecting each other’s skills and work, on a very different basis than merger.
The DoH would see just one overall body as the way forward, though you can argue that having specialist community based HIV organisations gives people different choices and opportunities.
The competition between organisations is a serious issue. We’ve looked at a more co-ordinated response with the media. A lot of organisations believe that their funding base is dependent on their media profile and that they are seen to be doing things.
I’d like to see a new independent piece of research into the various options. The skills base in the HIV sector has improved considerably, but sometimes funders have been guilty of giving money to organisations that are ill equipped or unprepared for their responsibilities which they’ve then struggled with.
Derek, millions of pounds are spent on targeting HIV negative gay men through the CHAPS campaigns, but next to nothing is aimed at the growing number of HIV positive people in this country, especially Africans. What’s your view?
We’re at a crossroads with this. Up till now we’ve had targeted
prevention in this country. In the late 1980s and early 90s the general population
work did reach people who weren’t openly gay. And the gay bar surveys
showed that the numbers of gay men who actually go to the gay bar and club ‘scene’ is
not that high. So we need to reach all the other gay men or they may be missed
out completely.
Although the DoH is not very keen on an HIV campaign aimed at the general population, maybe we need something again to raise the profile of HIV within the context of doing more about sexual health across the board.
There is a challenge to include people living with HIV in prevention work and to recognise that if you’re living with HIV for years you have particular needs and survival skills as well. But the problem in this country is that if you’re living with HIV and you’re living well, no one wants to know that!
There is going to be a whole new campaign targeted at Africans in this country and there’s no doubt that if there’s more money available it could be well used.
NAT should be able to move from strength to strength. Perhaps in general, we may need a new federation of UK Aids organisations that recognises the particular and unique contributions that each of the organisations can contribute and that plays to their strength. And people need the confidence that things will get done and get done properly.
I’ll miss NAT. It’s been one of my toughest jobs. The politics of the sector and the politics of the HIV issues are tremendous. But I’ve met and worked with some of the most creative and committed people in any job I’ve done, and many of them will still be here.
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