HIV: Don’t Live in Ignorance (Part 2 of 2)

In part 1 I put forward some reflexions triggered by my reading of Lord Fowlers’ new book AIDS Don’t Die of Prejudice and ended with a somewhat depressing view on our ability to quell the HIV epidemic without a major shift in how we respond to it. Part 2 will look at some of Lord Fowler’s ideas to revive the fight and make a difference, starting with a recent shift in paradigm about the role of antiretrovirals (ARV) used for the treatment of HIV infection..

The role of ARVs in prevention (both for the infected and the uninfected) is now acknowledged with the caveat that “the solution involves immensely more than the provision of antiretroviral drugs” (Fowler’s quote, emphasis mine). On the one hand, the idea of treatment of the infected for the prevention of infection in the uninfected (T4P, TasP) has made huge stride since it was proposed as early as 1995. But the logistic and financial challenges remain key obstacles.Beside the approach rests on first being able to diagnose infected people. On the other, the concept of Pre-Exposure Prophylaxis (PrEP) is slowly gaining pace but again rests on people coming forward for testing and on the willingness of health services to provide it.

Lord Fowler’s 10 propositions can be summarised as follow:

  1. Embark in new, revitalised, prevention initiatives
  2. Set increasing testing as a highest priority for Public education
  3. Implement a sensible sex and relationship education
  4. Offer treatment to HIV infected people as soon as they are diagnosed, irrespective of their CD4 count
  5. Invest into research towards a vaccine
  6. Tackle corruption “which scare so many nation today”
  7. Decriminalise sex work
  8. Introduce harm-reduction in drug policy
  9. Attempt a new dialogue with Churches and Faith leaders
  10. “Politicians must start leading again”

Lord Fowler notes with surprise that there is no demonstration outside the White House in Washington or down Whitehall in London calling for more prevention. The focus on prevention is important and his criticism of today’s HIV prevention campaign is that “no one has had the wit (or the money) to develop an effective campaign for the second decade of the twenty first century” (p.225).

Looking at prevention in London today and at our collective inability to reduce the number of new infections among gay men year on year, tackling the issue of an inexcusable 3,500 new infections each year for the past 10 years is both a major concern and a challenge for prevention marketing.

Comparing the evolution of HIV prevention campaigns to Coca Cola’s marketing strategy, Lord Fowler notes that “like other campaign, [past campaigns] needed to develop and be consistently put to the public. Coca-Cola would not mount a major campaign one year and then go off the air for the next quarter of a century.”

AIDS Tombstone It starts with me
1986 2013

But campaigns did not go off the air, and prevention evolved.

Campaigners realised that their marketing needed to be more focussed on those most at risk, and campaigning has gone a long way since the tombstone of the late 80s. However, there is a real possibility that their targets have become impervious to their consistent message of “use a condom consistently” and that in a global and fast-moving environment campaigners are struggling to reach their targets (think about prevention for Black gay men which are disproportionately affected by HIV).

Unquestionably there is no demonstration in front of Whitehall, but why should there be when the NHS provides free services at the point of care, when treatment is a pill a day and when a cure is allegedly no longer on the horizon but at the corner? Further where are the incentives for more public outcry when we do not have organised advocacy to lobby for new prevention initiatives to be rolled out, when prevention is centrally commissioned and centrally delivered, when new preventions tools exist but are not accessible?

Who would be calling for, and responding to, more prevention when more prevention is reduced to more testing and more condoms?

However, and to their credit, what can prevention campaigners do when they are stuck between the hammer and the anvil of a disease that we should still worry about but is nowadays chronic and manageable? Funding for prevention activities is always a burning issue, as much as the decision to devolved HIV prevention to local authorities, which will most probably relegate it at the bottom of their list of priorities. But there is also a crucial lack of rigorous evaluation of what is being done, of consultation with target audiences, and of beneficiaries themselves getting involved in prevention, which all could inform future witty prevention campaigns; though we should be wary of being too witty, at the risk of being inefficient.

New prevention tools such as Pre-exposure Prophylaxis (PrEP) but also broader approaches to testing in various settings need to be offered (GP surgery, A&E, home sampling and even home testing with an appropriate and safe governance). HIV testing has to be normalised in as many settings as possible and become an opt out process. Campaigners for more testing still needs to fight for this simple change. Though those unaware of their status form an heterogeneous group that is at times highly infectious, and reducing the number of undiagnosed people living in ignorance of their status will be essential, this will not be all either. Continued investment in research towards a vaccine is required steered by a more joined-up approach within the scientific community. More research is needed into other innovative tools such as microbicides but also more research into areas beyond biomedical interventions, such as research into motivators of behaviour changes and into the impact of social policies. There is room, and still hope to engineer a different response to HIV.

Lord Fowler called for a revolution to come from within to effectively change global attitudes (p.89). This is particularly important in a country like the UK which offers free testing and first class care to all, without discrimination. Everybody is always up for more prevention, whilst at the same time thinking that it is not for us but for other. This sort of otherness has shrouded HIV for more than 30 years and remains an obstacle to effective prevention. Many still think they are not at risk, even amongst gay men, many still believe that they would know if someone has HIV. These beliefs are often accompanied with much ignorance about the virus and how it is transmitted (thanks to a non-existent sexual health education at school) and also of how the management of the disease has changed since 1981. Attitudes have not changed and many still don’t test because they believe a positive diagnostic means the end of their life (listen to a recent converter here). There is an important work of communication and information to do around the management of what has become a chronic disease.

Going one step further, challenging the most reactionary elements and intolerance of homosexuality will remain fundamental (Lord Fowler’s points 2, 3, 7 and 8). This could and should be achieved through bold policies. If it was possible under Thatcher’s Tory government 30 years ago, there is no excuse for not doing it now. “We should remember that most major failures have come about because of a lack of political leadership, a lack of political courage, or a refusal to look at the facts” wrote Lord Fowler. Policies from prevention to treatment have to be evidence based, they have to involve those to whom they will apply, they have to challenge public apathy, complacency and prejudice. Australia has been leading the way with its approach to sex workers and IDUs, but on the other hand has not been as successful with gay men. This only highlights the need for a comprehensive approach to prevention.

In part 1 I was wondering who should read Lord Fowler’s travelogue through stigma and discrimination. I am ending it with a simple answer: Everybody.

Those working in the field of HIV will not learn much more than what they should already know (and if they do, then they should seriously consider some self-questioning), but they will be reminded that there is a big picture and that there is no silver bullet to end HIV. The bigots may feel reassured that they are not alone in this world, but may also be challenged in their positions. The politicians will be reminded that they can effect change, whether it is in their interest or not, but that history will remember their words and deeds. The public at large will be presented  with an overview of today’s issues, which are not so different from those of yesterday. Altogether, Fowler’s book will remind us that the HIV epidemic is not over yet, why, and will inspire us to find out how each of us could contribute to end it.

In 2011, whilst commemorating the 30th anniversary of the first reported cases of AIDS, Drs. Fauci and Whitescarver wrote that “Thirty years later, we are gratified by the progress that has been made in understanding, treating, and preventing HIV/AIDS”. It is a shame that we have made little progress in reducing stigma and discrimination against those most at risk of HIV infection and against those living with HIV. We may be winning the scientific and medical battle but we are on a stand-off when it comes to winning the social battle towards accepting minorities at risk and those infected.

What should be leading us in the next 20 years is an approach based on human rights. This has been shown to be a successful approach for treatment and it should prove to be a successful one for prevention. But at the end of the day, as Lord Fowler wrote, “If we go forward then we must overcome one last barrier which still stands in our way: the barrier of prejudice, which can defeat all our efforts”.

It is our individual responsibility not to live in prejudice lest we want to die in ignorance.


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