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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.

~rjt

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HIV: Don’t Live in Ignorance (Part 1 of 2)

A reflexion on Lord Fowlers’ AIDS Don’t Die of Prejudice.

Whilst looking for an opening sentence for this musing, I wondered who could be interested in Lord Fowler’s book on Aids in the year 2014. I checked the Amazon website and found that Fowler’s travelogue was ranked 41,471 on Amazon UK Bestsellers list. Number 1 at the time of writing was a yet to be published adult version of a kindergarten activity book by a social media histrion who challenges his “readers” to complete a journal of pointlessness and do virtually nothing with pride. I shall come back to that.

Lord Fowler’s book is not an history of the response to HIV/Aids but an overview of how HIV is being dealt with more than 30 years since the discovery of the virus that causes Aids. In an engaging and lively narrative (gossips included) Lord Fowler recounts his journey through time and space, pinning the story on what is happening in nine cities across five continents where the epidemic is partially controlled, still uncontrolled or on the verge of exploding to expose the sheer nonsense that drives the response to the epidemic.

That in 2014 the virus and Aids are still a problem worldwide would surprise many who are not long-time familiar with HIV and who may hear every week that a cure is around the corner. But what is even more surprising is how little our perception of the virus and of those living with it or at risk of being infected with it has changed since 1981 when the first case was formally reported. This is even more tragic in those countries which have been most affected by Aids.

siw-dont-die-ignorance
Iconic 80s billboard (Photo: Johnny Stiletto)

The opening chapter is set back in the late 80s, when little was known about the disease other than that it was mostly sexually transmitted and that there was no cure or treatment. “It was not a time be too delicate” wrote Lord Fowler recalling his struggle to get pass the Iron Lady’s objections to a national campaign of information based on straightforward messages. Today these would fall on deaf ears and would be perceived as unnecessary and inefficient scaremongering (rightly or not).

At the time, and still now, a common and shared fear of those in charge of preventing the spread of HIV was that straightforward sexual health advice, which often requires explicit language. would incite people to engage in risky sexual behaviours or in activities that they would not otherwise engage in (such as anal sex, much to the annoyance of then Lady Thatcher and now Pastor Martin Ssempa). It was a “regrettable necessity” in the words of the General Home Affairs Committee which finally approved the campaign back in 1986.

Despite tried and tested approaches providing the evidence that being direct works, the public and those most at risk were deprived of valuable information because it may give them ideas that conservative Britain preferred them not to know (or that a section of conservative Britain ignored existed or prefered to ignore existed). This patronising stance would find many emulators in the following 30 years, often men who knew little about sex such as Church leaders. Nowadays prevention that is too direct is still frown on, even by those it aims to help and even in “progressive” countries. But the first victims are often kids who are deprived of a knowledge that could make a crucial difference as they grow up.

One of the key issues of disagreement then and now was the framing of the epidemic? Was it a public health issue or was it a moral issue? In sub-Saharan Africa or in Central Europe and Asia, HIV is still perceived as a disease of those perceived as morally corrupt, such as sex workers and drug users or as sexual deviants such as gay men and transgender people. Though in all honesty the same beliefs can be found in the Western world.

The failure to understand HIV as a global health issue pervades the historic response to the epidemic and continue to hinder the implementation of evidence-based responses to it. The conservatism that prevents sex education at school (better left to parents who have themselves be taught little about it), the opposition to equal rights whatever one’s sexuality, the perception of sex workers and IDUs as social pariahs, and above all the lack of political will to tackle misconception, stigma and discrimination are found from Entebbe to Kiev, Moscow to Washington DC, London to New Delhi to name only a few places visited by Fowler.

But it is not just politicians who are failing the public. Churches and spiritual leaders have a huge responsibility in the propagation of the virus with their dogmatic position on condoms and their opposition to equal rights for LGBTs. In Uganda, Russia, or Ukraine, religious organisations whatever their denominations, have done more to spread Aids than to stop it. And when religious leaders such as Archbishop Orombi , former leader of the Anglican Church of Uganda wrote in 2007 that “the younger churches of Anglican Christianity will shape what it means to be Anglicans. The long season of British hegemony is over” (p. 83 and source here), there is little hope that a modern, more liberal form of Christianity would be able to affect the political and social response to HIV in an over-zealously religious sub-Saharan Africa. On the contrary, it would only be perceived as another attempt by the West to re-colonise Africa. It is saddening to see former European colonies gaining their political independence, often after long struggles, to remain victims of religious colonialism and be proud of it.

However, it would be hypocritical to point a finger at the shortcomings of countries struggling to come to term with rapid development, the spread of democratic processes and the West’s vision of what a tolerant and modern society should be, when the rich and developed West (or North) is itself struggling to carry out at home what it preaches abroad and when it is proselytising in Africa. In many respects, the epidemics in Washington DC or in Lewisham is on a part with the epidemic in a number of African countries. Nothing to brag about. Syringes and needles exchange programmes are still banned in many US states, gay men are still being hounded out in the UK as much as in Russia, hanged in Iran, and sex workers are still criminalised pretty much everywhere but Australia.

The polity failing, it is international non-governmental organisations that have been leading the fight. Lord Fowler’s book is a reminder that although these seems to have been around for ever many institutions are at best a generation old. UNAIDS was established in 1994 and launched in January 1996. The Global Fund started to operate in January 2002 and PEPFAR was born out of “compassionate conservatism” in 2003. These organisations, though not always perfect (PEPFAR anti-prostitution pledge will remain a dark spot on the historical success of the programme), are nevertheless playing a key role in taming the epidemic and without the vision and leadership of a few men of good will the world would be a much worse place.

In a strange turn of events, Fowler notes that a few liberal heroes, such as Bill Clinton and Nelson Mandela, will bear the blemish of inaction for not having done much whilst they had an opportunity and the power to do so. But the US public and polity were more interested in their president’s sexual behaviour than in the sexual health of the nation. As for Mandela, managing the country’s transition out of Apartheid was understandably a more urgent issues on his agenda. Both men have however done much since they left power.

However, there was no pretext for his successor Thabo Mbeki for doing nothing and certainly no excuse for him and his health minister Manto Tshabalala-Msimang to actually worsen the epidemic. Between 1994 and 1999 Mbeki was serving as deputy President with Aids in his portfolio. The consequences? In 1990 there were fewer than 100,000 people living with HIV in South Africa, a decade later there were almost four millions; the result of political immobilism, scientific and cultural denialism, and political opportunism.

And this is a remarkable constant of the response to HIV/Aids: political will, or lack thereof. The response to Aids has been and still is “to do virtually nothing with pride” in many countries or worse, to pander to interests groups and to human fear. Fear, which manifests itself through stigma and discrimination against women, sexual minorities, the infected and many others perceived as social misfits. Fear, stigma and discrimination are recurring themes during Lord Fowler journey. Fear that sexual education will pervert children, fear that being up-front will send the wrong message, fear that gay men will pervert society’s institutions, fear that sex workers and IDUs will spread the virus amongst the good people if they are not controlled, jailed or even killed.

And the response?

Ignore the evidences, ignore that stigmatisation and discriminating restrict access to healthcare and increase risk of transmission, ignore that needles and syringes exchange programmes are an effective means to reduce the number of new infections amongst IDUs, ignore that human rights provide safety and security to those most at risk. On the contrary, go full steam for a knee-jerk reaction, criminalise all those most at risk or affected with HIV, criminalise transmission, sex-workers and gay men, strip and beat IDUs until they say that they will not inject (p.132).

The brutality and cruelty with which we treat each other, especially the most fragile elements of our society, is frightening.

However, we should not just focus on stigma and rejection, we need to look beyond the words and remember that they are born out of people, human beings, maybe far away, but maybe our neighbours and even ourselves. It is people who object to interventions based on evidence. It is corrupt people who divert funding for treatment and prevention. It is people, men and women, who abuse and beat gay men in Russia as much as in the streets of Edinburgh. It is people who object to their children being taught the basics of sexual health. It is people who let others, religious leaders or populist jingoistic politicians, to think for themselves.

But it is also people who may engage in behaviours that put them at risk (I refuse to use the word reckless – I don’t think it is ever a reckless decision). They do it for a number of reasons, one being the dangerous new belief “that all is needed these days is one pill a day” whether it is for prevention or for treatment or the naïve belief that people will tell you if they have HIV (And then what? Shun them off?). We should not ignore our individual responsibility in the epidemic and the role we can play to end it. We will need a revolution and it will have to come from within wrote Lord Fowler. That revolution will not happen if we keep living in ignorance.

In part 2 I will be looking at some of Lord Fowler’s propositions that could make a difference.

~rjt

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WHO recommends PrEP for MSM: Time for the UK to take note and act?

In a surprising move, the World Health Organisation has come out in support of Pre-Exposure Prophylaxis (PrEP), recommending Men who have Sex with Men (MSM) to consider its use for HIV prevention alongside the use of condoms. It will be a huge challenge for countries where resources are limited and where delivering drugs for treatment is already a challenge, but what does it mean for countries like the United Kingdom with its world class National Health Services and an epidemic characterised by half of new HIV infections diagnosed amongst gay men and where PrEP, despite proven efficacy, remains unavailable?

The problem with PrEP is not that we don’t if it works – it does, with a 42% risk reduction when compared to a placebo in trial with MSM and potentially more than a 90% risk reduction when taken strictly as indicated. It is not that we don’t know if PrEP is cost-effective – mathematical modelling as shown that for each case of HIV infection averted an estimated £280,000 – £360,000 in lifetime cost-treatment could be saved. It is not that we don’t know if PrEP has side effects or an impact on sexual behaviour – several studies have provided data on safety (it is safe) and behaviour change (no changes noted so far in trial) and drugs used of PrEP have been used successfully and safely for treatment for many years.

The problem is that the health commissioners have to be convinced that it is worth spending money providing PrEP on the NHS (In 2013 the cost of daily Truvada was £418.50 per month, not including care). And convincing the commissioners seems to rest on the results of the PROUD Trial.

PHE reaction to WHO on PrEP

So what is the PROUD trial and when will its results be available?

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Is a Pill Enough to Fight HIV?

The New York Times started a debate on Pre-Exposure Prophylaxis (PrEP) for the prevention of HIV infection by asking five prominent researchers and HIV advocates to discuss whether promoting the use of antiviral drugs was a good public health strategy, or if it will encourage more to have unprotected sex.

Beside being over-simplistic, the framing of the question sets the tone, direction and probably outcome of the debate. The question could have been whether PrEP will reduce the number of new HIV infections but instead it sets the intervention against a backdrop of moral and behavioural choices, that of good, responsible worth to be encouraged and supported pubic health interventions (read condoms), versus encouraging bad, irresponsible, reprehensible unprotected sex. Can the two really be part of the same question?

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Clinical Research: I am HIV positive and very much healthy, thank you.

The participation and contribution of healthy human volunteers in clinical research is key to the successful development of new approaches to HIV prevention. But what is a “healthy volunteer”?

The successful development of a HIV vaccine or of a New HIV Prevention Technology (NPT, such as microbicides, or Pre-Exposure Prophylaxis) as well as behavioural interventions rely on volunteers’ willingness to participate in research studies, giving and committing their time, and sometimes putting themselves at risk, for their benefit but also for that of others.

Early stage HIV vaccine research is one of the areas of clinical research where the immediate benefits from participating in a study is far to be obvious. Indeed, Phase I vaccine research is mostly concerned with the safety of new vaccine candidates and their ability to trigger an immune response, rather than with their effectiveness. Human participation in this type of research is one of the most altruistic, as ethical guidelines proscribe remunerating volunteers who engage in research for more than the time they give and discomfort they may experience during the course of the research.

These early phase studies typically recruit “healthy volunteers” into trials that are often long and demanding and with outcomes and benefits that may not materialise before many years. Recruitment is then an ongoing challenge which is more demanding than recruiting volunteers for research conducted with people affected with a disease, more accessible through care and for whom there may be a more direct and immediate benefit if the research is successful.

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