Thou shall not bear silent witness: the role of international activism in HIV.

Twenty-five years alter its discovery, HIV has proven to be a problem that is truly exceptional, medically, socially, and politically. HIV has galvanised partnerships across public policy, human rights, and medicine--constituency collaborations that would have been previously inconceivable. This unprecedented attention has been largely matched by investment in clinical research. That there are 24 licensed antiretrovirals for the treatment of HIV infection from 4 different classes of drugs, presenting myriad therapeutic possibilities, is testament to the political and social tenacity of the response to the epidemic. No other medical discipline or disease can boast such tangible results. At the heart of this phenomenon is the remarkable legacy of AIDS activism.

Even after all of these years, it is sobering to consider how much we as an activist community have learned and adapted in our fight against AIDS. In this moment of introspection, not only should we reflect on what the next 25 years may bring, but more importantly, we should define our place in this future and whether we are motivated and equipped to adequately address the impending challenges of HIV treatment and prevention in the developing world. The gaping chasm of inequality that stares back at us from other continents should be evidence enough to mobilise us. Consider this perverse transposition--80% of people with HIV in the developed world have access to antiretroviral therapy, while slightly less than 80% of those living in poorer countries that need HIV treatment do not. (1) And while the rest of this essay primarily addresses our advocacy efforts in the developing world, I accept as paramount and as a fundamental objective the necessity of working toward a "100% access" goal in our own developed countries.

HIV activism has reached a critical hiatus. This is an opportune moment in which to evaluate priorities for the role of treatment activism in the global context, as decisions that we make now will shape our impact over the next 2 decades. What we have achieved is duly acknowledged, but the challenges that face us are uniquely different from those we have previously encountered. Two major challenges lie ahead: first, to continue with treatment and prevention activism, pushing forward the scientific agenda on which we have so ably delivered, and second, to ameliorate the conditions of those who suffer the multiple, compounding indignities of poverty, disease, and discrimination within both our own research-rich nations and those distanced by geography and circumstance. The latter is a far more daunting challenge. In this regard and with some notable Non-Governmental Organization (NGO) exceptions, our interventions have been sorely inadequate.

At this historic juncture, I take this opportunity to share some perspectives from my personal experience as an AIDS activist, a member of both European and US advocate forums, and a community treatment journalist. My learning has also been shaped by professional networks in the HIV scientific, policy, and clinical communities, including my work with international NGOs. Physicians, scientists, governments, industry, and donors all have a uniquely nuanced role in the world of HIV, but I focus here on the Western activist community's neglected potential for addressing issues critical to the developing world. In particular, there is a need to establish well-informed, responsible strategies for intervention that recognise the evolving new world order in which a few powerful individuals and non-governmental agencies have the potential to dominate the global public health agenda. As such, I propose a critical self-analysis in several important arenas: 1) the knowledge and skills needed for our constructive contribution; 2) the implications of the finding and political alliances we may deliberately or inadvertently cultivate; 3) the need for a coherent policy framework based on local realities of people with HIV in the developing world; and finally, 4) a shift from the established self- and individual-advocacy approaches to models that encompass broader public health perspectives.

Science and the activist

The HIV agenda embraced by Western activists over the past 2 decades has been predominately a clinical one, with a singular emphasis on pushing the best drugs rapidly through licensure, into the clinics and to the patient. To a great extent we have achieved our clinical goals. With so many drugs on the market, our emphasis now should be on fewer but better drugs with higher genetic barriers to viral resistance that help compose safer, simpler, and more tolerable regimens. Charles Boucher, a virologist from Utrecht Medical School in the Netherlands, charts a demographic chronology of the virus. He draws a distinction between 2 divergent populations affected by HIV. The first population encompasses those infected early in the pandemic and treated historically with suboptimal mono- and dual-therapies. These patients harbour multi-drug resistant viral strains less responsive to existing treatments; a constant supply of new treatments is essential to battle their rapidly resistant virus. For the second population--those newly-infected with either wild-type or a transmitted virus with low-level resistance that is increasingly detected at baseline by routine monitoring--the treatment needs are different from the drug-resistant patients. Yet despite the epidemiological evolution and success of antiretroviral therapies, we have yet to modify our activist approach. We demand drugs with novel mutational pathways and faster approval from FDA.

Safety, tolerability, and effectiveness of new regimens remain paramount, as does the need to improve investments in diagnostic technology. There is a special role for treatment activists who are highly research- and treatment-literate and therefore able to interiface effectively with industry and investigators. We have learned that industry, and even the clinical community, perceive the needs of patients differently than we do as patient advocates. For this reason, scrutiny by informed activists who understand the complex language of viral resistance, pharmacokinetics, and chemokine receptors will continue to be important in bringing forward sustainable, effective therapies and prevention technologies to treat and prevent HIV.

In addition to continuing our inquisition of the science and trial designs put before us, we can also assume greater responsibilities in effecting change. Those in leadership positions at NGOs consistently reflect the structures of those in power in the US and Europe. Our focus should be the marginalised communities within our resource-rich countries, those communities who bear the disproportionate burden of HIV here are not yet strongly reflected in our activist circles, at scientific conferences, as speakers, or as community journalists. Advocates from these communities should be incorporated into our ranks.

Global health and the international activist

In UNICEF's famous words, "there shall be no silent witnesses." Yet we continue to be observers in the unfolding catastrophe of HIV in the developing world. Our success as activists in pushing forward HIV treatments in the developed world is unmatched by our actions to support the world's most vulnerable populations. There are shining examples of agencies that have delivered exceptional results. Organisations such as Medecin San Frontieres (Doctors Without Borders) have demonstrated a coterminous approach to activism and health service provision; by delivering health care in rural, isolated regions, they have only strengthened their contribution and credibility. But in large part, treatment advocates active in the Western hemisphere have failed to mobilise their skills, resources, and attention beyond our community sub-groups.

If we do decide that the developing world deserves our attention--and as yet there remain only a handful of organisations entering this global advocacy movement--we have a number of challenges with which to contend:

* Do we have an inherent moral imperative to intervene? If so, what is our role and with what legitimacy or authority do we deem to intervene?

* Do we have an accurate understanding of the situational realities of people living with HIV in the developing world?

* Without a coherent policy framework, how will we organise ourselves and take our place alongside our activist peers in the developing world?

* Can we make the transition from the well-rehearsed individual and self-advocacy paradigms to population, public health-focused advocacy that requires different knowledge, sensitivities, and world-view?

To intervene or not to intervene

Given our collective histories and the role that our respective governments and market dynamics have played in creating the vast disparities in health in the world, the moral imperative seems self-evident. However, this responsibility does not give us legitimacy. Indeed, our motive for intervening is, and should be, called into question. Sergio Haddad, President of the Brazilian Association of NGOs, states the problem as one of perception: "Northern partners view Southern social problems as charity issues," he notes. (2) He amongst others has called for greater scrutiny of funding sources that support NGOs. But more than that, he suggests that what is needed are coherent "principles to influence public policy" rather than the fragmented and self-indulgent agendas of individual agencies.

In an article titled Belligerent Funding, Hugo Slim, a Trustee of Oxfam and international adviser to the British Red Cross, contemplates the "'moral implications' of accepting (or not accepting) funding" from suspect sources. (3) His own analysis explores actions by governments who pursue military intervention followed by the offer of subsequent relief, in this case by the British government. He concludes that in fact it may be immoral not to accept money from agents who have been instrumental in shaping the debilitated circumstances of war-torn, poverty-ravaged countries.

As we assume a role in international advocacy, it is not only funding that is relevant but also our official and informal alliances. In the fractured, ideologically nuanced world of international politics, we may struggle with our own cultural limitations and usefulness. In treading the tortuous path of intervening in other countries' affairs, we must do so with clearly articulated motives, scrupulous principles, transparency in our governance and administrative systems and, above all, a constant reflexive awareness of our funding masters and their agenda. The "clientilistic" relationships that governments have formed with international NGOs are well-intentioned, and to some extent necessary, but they can be a relationship fraught with danger. Too easily, NGOs are perceived to have been co-opted to deliver the prevailing government agenda, whether by design or more often, by benevolent ignorance.

Arundhati Roy, in a vociferous critique of the role of NGOs, writes, "Though they may not be the same agencies (as those of Western governments), they are certainly part of the same political formation ..." (4) She sees NGOs as an extension of the neo-liberal project, as mannequins of the state, motivated by guilt, animated by zeal, but ultimately serving to "... defuse political anger and dole out as aid or benevolence what people ought to have by right. They unwittingly reinforce racist stereotypes and reaffirm the achievements ... the compassion--the tough love--of Western civilisation. They're the secular missionaries of the modern world."

Given this just critique, how do we counteract this? How do we take our place as responsible global citizens with skills, resources, and conviction, and do so in a manner that is fair and worthwhile? This brings us to a more sensitive introspection--is our intervention even wanted? Developing world NGOs have sometimes expressed the opinion that we may be interfering without adequate reference to local realities and due diligence. Witness the recent and very public clash between the Treatment Action Campaign (TAC) of South Africa and Act-UP Paris regarding conduct in the DART (Development of AntiRetroviral Therapy in Africa) trial in Africa. (5) The issue became one about information and representation--whose priorities were being expressed, how these were formulated, and the terms of engagement for intervention.

But good intentions aside, such contretemps rest largely on the notion that organisations that intervene at arm's length sometimes jeopardise the hard-earned investments or relationships cultivated by local NGOs. Advocates from developing countries sometimes receive external activist intervention with muted enthusiasm, perceiving us to be morally supervising, dictating terms from New York, London, or Paris, rather than participating as equal or advisory partners. Indeed, as individuals and agencies, we are rarely humbled by our outsider status, consistently refusing to accept that we will always know less about the local situation, all the while basking in the luxury that we can ultimately return to our comfortable existence.

And it's not only Southern NGOs, but research and clinical colleagues from the developed world, who challenge our competency, legitimacy, and value. Professor Joep Lange, writing in PLOS Medicine, accuses us of "uninformed demagogy and intimidation." (6) When respected physicians such as Professor Lange feel this way, we have to strive even harder to develop our role as credible partners in the global health planning and negotiating arena.

Our place in the new world order

Beyond issues of legitimacy, there is a structural challenge that should immediately focus our efforts. It follows a famous maxim that the world is made up of a hundred people; that is, our lives are shaped by the influences of a few very powerful individuals. In the field of HIV, I would argue that the world is getting smaller still, throwing into sharp relief the function and sustainability of historically established organisations endowed with the responsibility for global health. The Bill and Melinda Gates Foundation, one of the largest donors of research and capacity in resource-poor countries, has a commendable record of intervention on HIV and neglected diseases. Along with other giant donors, such as the Clinton Foundation and the Soros Foundation Network, they have the potential to influence the global public health agenda, in some ways distorting it. This has created a very real conundrum in modern public health. Given that these organisations invest unprecedented funds towards improving public health, and that they do so publicly, what implications are there for international health agencies tasked with planning and implementing global health? And how must activists seeking to engage with these charitable organisations define their contribution in this new world order?

Journalists Jon Cohen and Laurie Garrett call attention to the phenomenon. Writing in Science, Jon Cohen pronounces in "The New World of Global Health," "A revolution is under way that is fundamentally altering the way the haves of the world assist the have-nots." (7) Laurie Garrett alerts us to the potential alarming consequences of individuals who bring so much resource to the negotiating table that any claim to an equal, empowered transaction is tendentious. "Gates' money sets the agenda for a great deal of public health policy, but it's important to remember what it isn't doing and won't do--the job of the World Health Organization (WHO) and the World Health Assembly ..." (8) Mark O'Keefe, writing in the San Francisco Chronicle, refers to the same issue, describing the "dangerous degree of influence" that these agencies can bring to bear. (9)

The fact that the Gates Foundation and others donate their personal wealth towards ameliorating global public health is commendable, but where is the accountability? It may be worth bearing in mind that, for all its faults, the WHO is a democratically-formed international agency made up of its member states, with established structures of global governance and accountability. In contrast, leaders of private donor agencies have responsibility only to the internal agenda of the foundation. It is imperative therefore, that NGOs themselves participate in the process of defining donor responsibilities to safeguard against any potential transgressions. And for this to be effective, NGOs will need greater transparency, accountability, and responsibilities. In this new world order where articulate, powerful donors sit alongside normative agencies, NGOs have a different but entirely legitimate contribution to make. In this situation, international HIV and public health advocates can define a new position, one in which we are tasked with keeping a check on the extent of powers of donor agencies, just as we would do with our own governments, international normative agencies, or industry representatives.

We have yet to fully develop our role in this respect, but the need for vigilance is becoming increasingly vital. As community-informed representatives, we can establish both legitimacy and practical usefulness with the advocacy and conciliation skills we bring to help balance the differentials of power that influence North-South negotiations. Inherent in these different perspectives of agency responsibilities is the potential for both danger and opportunities for global public health. Certainly the challenge of meeting the burgeoning health needs of developing countries will require a multiplicity of partnerships and approaches, as well as a stringent critique of political motivations.

An end and a beginning

The treatment activist community in the West has been at the forefront of scientific and clinical advances in HIV. Less certain is the impact we have made on the global epidemiology of HIV. The potential for activist contribution on the global scene is matched only by the need and urgency for informed and conscientious intervention that addresses the escalating devastation inflicted by HIV disease. The emergence of big, powerful donors within global health has raised an intriguing spectre, introducing and reconfiguring key players around the public health agenda-setting table. With their insight, advocacy skills, and convictions to direct resources and energies towards those most vulnerable, HIV activists have a critical and much-needed contribution to make in this dialogue. How we fashion that role will require us to ask some important, if uncomfortable, questions as we take our role alongside activist comrades in the developing world. Only then can we hope to improve the conditions for the millions living with HIV, to realise our potential, and ultimately, to define our own place in the global community.

References

(1.) WHO and UNAIDS HIV/AIDS. Progress in scaling-up access to HIV treatment in low and middle-income countries, Treatment data update fact sheet, August 2006.

(2.) Farouk F. A global dilemma for NGOs. Mail and Guardian. May 3, 2002.

(3.) Slim H. Belligerent Funding. British Overseas NGOs for Development (Bond), April 2003. (http://www.bond.org.uk/networker/2003/april03/iraqfund.htm)

(4.) Roy A. Help that hinders. Le Monde diplomatique, November 2004. (http://mondediplo.com/2004/11/16roy)

(5.) Correspondence between TAC and Act-UP Paris on the International Treatment Preparedness list, September 2006.

(6.) Lange JMA. We must not let protestors derail trials of pre-exposure prophylaxis for HIV. PLoS Med. 2005;2:e248.

(7.) Cohen, J. The new world of global health. Science. 2006;311:162-167.

(8.) Garrett L. A snail-like WHO needs a shake-up. Council for Foreign Affairs. May 25, 2005. (http://www.cfi:org/publication/8128/snaillike_who_needs_a_shakeup.html? breadcrumb=%2Fissue%2Fpublication_list%3Fid%3D430%26page%3D3).

(9.) O'Keefe M. Wealthiest in world wield power through philanthropy but is their giving buying influence? San Francisco Chronicle. January 21,2001.

Yasmin Halima is Senior Consultant to the International AIDS Society in Geneva, Switzerland.