Year 31 of the HIV epidemic. World AIDS day. The time of the year to publish reports and plans with a new impetus to address the HIV/AIDS epidemic. This year the theme is “Ending AIDS”. The field has never been shy of trigger words and turgid plan and 2012 is no exception with PEPFAR’s new blueprint “creating an AIDS-Free Generation” and UNAIDS’s annual report “Zero new HIV infections. Zero discrimination. Zero AIDS-related deaths” to name only two.
To conform to the seasonal custom, here are “Five strategic orientations towards ending HIV”.
1. Learn about the epidemic, and then foster learning about it.
Many believe that education is the (ultimate) answer to end the epidemic or will play a major role ending it. Unfortunately educating people has become an end to itself and education has been reduced to providing people with accurate information with the assumption that well informed people will make the “right” decisions. The approach often overlooks the necessity for that information to be relevant, to be delivered appropriately, and to reach those who need it. Not much attention is given to people’s ability to make the right choices (or act it), and what is or could be “right” is rarely set out.
Further problems with “education only” is that it is a passive, top-down approach delivered by some assumed to know better to other assumed to know less. It is monolithic, devoid of relational dynamic in which knowledge is dumped.
The willingness of recipients to be educated is rarely considered. Many do not want to be defined by a problem that education will solve. Many do not want to know (more) about HIV than what they already know. Many think they already know enough, if not all. And what good is education when you can’t share your knowledge because of your personal circumstances (gender-based violence comes to mind) or apply it because you do not have access to material requirements to make it work?
On the other hand learning is a personal demarche coming from within the individual, a quest towards self-betterment. The will to learn expresses the desire to improve one’s knowledge with the purpose of improving one’s ability to manage better in a challenging and difficult world. Whilst education is delivered and left to the individual to use or not, learning is fostered with better chance that what has been learned will be put to use because it comes from within and when there is a will there is away.
2. Take action based on sound scientific evidences.
This should go without saying, but not without limits. The best evidences in the world will never be enough to convince those who have the power to effect change and to act on evidences, if they get the better of acting otherwise. Further, programmers and planners need to put their money where their mouth is. Funders and governments ideology often negates a world full of good intentions.
Still, evidences however logical or rational they are, should not prevail over or ignore the will and agency of people on the ground, the cultural and political context and sensitivity in which they are to be used. Forcing interventions down the throat of individuals and populations on the ground that they are based on sound evidences can only lead to rejecting these evidences and the further spread of the virus. This is true for both technological interventions but also behavioural, cultural and political changes.
3. Invest in social science research.
Learning about the epidemic is not only a matter for those at risk of infection, but first and foremost for those who aim at ending the epidemic. HIV prevention has made tremendous progresses in the last three years. New prevention technologies and approaches have arisen, sometimes surprisingly. Many were quickly branded as the solution to all our problems, and call for immediate roll out issued. But we should never forget that all these new tools are of no use if a) they are not commonly available and affordable, b) they are rejected by those who would benefit most from them. The story of the female condom still haunts the field of prevention and emphasises the need to conduct thorough social science research from an early stage in parallel to basic and clinical science, as this will be key to the successful introduction, reception and roll out of new prevention technologies and biomedical interventions.
4. Make funding work.
More money is welcome but better use of existing money would make a tremendous difference. Knowledge improves every day, even if slowly. Funding needs to be flexible to adjust to important developments but also to sudden changes. Too often funding comes with unnecessary if not damaging ties. Beside funders deciding what kind of research is worth doing or not (an issue in itself, the best science should be funded), restrictions on how, where or with whom funding can be used and protectionist procurement rules that make delivering a project insanely costly must be removed.
There is too much red tape around funding and project management. Rules, accountability, transparency, though necessary, have created a management industry that guzzles money that could be put to better use delivering interventions and projects. Unbending funding rules have led to losing opportunities to do better science. Projects with innovative potential are constrained by the strait-jacket of rules and regulations which care more for reporting and accountability to funders than for results for beneficiaries and future research. Funders, institutional and philanthropic need to empower the people and the research they have decided to support.
5. The end of AIDS starts with a political statement and ends with political action.
The span of the HIV epidemic is largely the result of a political inability to recognise the importance of the epidemic, and to act at the right time, in the right place, with the right approach. Political action means much more than improving diagnosis, delivering more drugs and counting saved lives. Political action means getting involved at the highest levels to ensure that human rights are respected, that key populations are not discriminated against, that diplomacy goes beyond economic interests to include people’s interest. Aid conditionality is a fiercely debated approach, but aid without tie will not deliver better. There is no potential trickle down effect with an epidemic the size and extent of that of HIV. We must acknowledge that behind many violations of human rights and failure to act is a thirst for power and clinging to it. Political action takes place above and beyond the epidemic.
This year World Aids Day is not so different from last year’s WAD, but we can make the next WAD different if we start with a different narrative of the epidemic and engage in different conversations. Biomedical improvements and technological innovations won’t be enough on their own. Diagnosis and treatment will not be enough on their own. Even goodwill will not be enough. To bring the HIV epidemic to an end requires deep cultural changes and to achieve these, we need to have more than a conversation; we need to have different conversations about HIV and how to address it.
|NotesHIV rather than AIDS is used as the former is clearly identifiable and the agent causing the latter. With the advent of combination therapy fifteen years ago, AIDS is becoming less common and less visible, especially in the developed world (it is another story in the rest of the world). It is ending the transmission of the Human Immunodeficiency Virus that will lead to the end of AIDS. Targeting AIDS is addressing the effect, not the cause and this is another failure of the many metaphors used in HIV prevention.
Another noticeable and worth reading report, though very much focussed on biomedical and technological interventions, is AVAC’s “achieving the end one year and counting”, if only because it observed that we are already failing to achieve the goals others report are setting now.
My personal experience of the failure of education is in the seroconversion of three friends in 2012. None of them were uneducated, all knew about HIV and its transmission, and all had long conversations about it with me. Still, they became infected. Education and the million put into developing and implementing old and new prevention technologies won’t change this. As noted by Bisi Alimi “There has been billions of investment in HIV treatment and prevention but we are still riddled with shame and anger. Even though research has shown that living with HIV is no longer a death sentence, we still live in ignorance.”
Despite PEPFAR willingness to work with the civil society to reach out to Key Populations, the organisation still requires its recipients to abide to the anti-prostitution pledge and there remained confusion surrounding PEPFAR support for family planning services (in particular condoms).
Owen Barder from the Centre for Global development posted on how 70% of $5 million of food aid to Cambodia in 2012 was spent on freight and logistics. Similar waste can easily be found in HIV programmes.
Accountability is essential as much in donor country and recipient country. In poor country NGO are a source of income for may locals. it’s importance is not being downplayed here, but it should not be confused with bean counting.
AVAC Mitchell Warren noted in a Tweet today that HIV has been politicised. This is true and not necessary a bad thing. HIV is political, and what Warren was probably wanting to highlight is the bad politicisation of HIV. Interestingly, Mitchell makes a number of points that echo some of the views expressed above and I am glad we share these.