Clinical posts from members and guests of the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) from various international medical and scientific conferences on HIV, AIDS, viral hepatitis, and sexual health.
5 days in Washington: feathers, faith and financiers
The Opening Ceremony: First, a rant…there is a history to AIDS and Sunday night in Washington that history was reconstructed. It was reconstructed as one of common cause and compassion, driven by our collective faiths and heritage and the deluded notion that we have all been in this together, fighting the good fight, supporting each other in some sort of quasi evangelical quest for social justice, wherein we are blind to difference and saved by science and gods.
Every International AIDS Conference has its own local flavour, and that is appropriate; I know I am in America, a land far less cynical and irreligious than my own. But I am here, I was told, because of the fight. And I am here, I was told, because of my faith. Fighting together, fighting AIDS, fighting discrimination, fighting the naysayers who don't think treatment is prevention, who don't think we are all the same in some god's eyes. Fight on brothers and sisters! I am accompanied, I was told, by my brothers and sisters of faith, walking into the light of an AIDS free generation. An Elder of the local indigenous people waved a feather at me and a preacher called me a crusader; call me ungrateful but I resent having my motivations, my reasons for why I work in this field, presumed and attributed to someone else's idea of what makes this meaningful.
Again, I was told that I am "standing at a unique point in history", "at a defining moment". Oh, really? ... Still? ... These people have been telling me that I am standing at a unique point, 'facing a (perpetually) closing window of opportunity' for over twenty years now. When exactly is that window of opportunity going to shut? The mood of this conference would not be one of diminishing opportunity; quite the opposite, there would be more optimism of 'cure' and truly achieving an AIDS free generation than ever before. But this does not, it seems, suit the drama and theatrics of an opening night ceremony, devoted to the drama of AIDS.
The Mayor of this fair town assured me that 'AIDS knows no boundaries and crosses borders at will'. Well, yes sir, it does but the fact is it stays where it likes, stays where it meets least resistance and while it might occasionally cross into the leafy streets of Georgetown or Dupont Circle, it actually has taken up residence in your beltway and Black neighbourhoods with a vengeance that should shame you. Fact is, you have a better chance of accessing testing, getting into care and onto treatment and staying in care and on treatment in the Highlands of Papua New Guinea than you do if you are Black and gay, Black and injecting, Black and selling sex, Black and transgender, Black and any or all of the above, and you live in this city. Several presentations at this conference would show us data demonstrating this. But I digress, turns out the Mayor is "personally committed to finding a cure".
I watched the theatricality of it all, the orchestrated pause-for-applause speeches, wondering if anyone was going to say what we know to be true; 30 years of political inertia have left this remarkable country with an HIV and AIDS epidemic that should have and could have been avoided.
And then came the World Bank. That doyen of development enlightenment and community based sensitivity. Its President positively bounded to the microphone to add his rhetoric to this increasingly bizarre occasion of pseudo- electioneering and revivalist fervor. "Dear, dear friends", he stated, "I can actually see the end of AIDS." And then something happened that should have brought this house down -on his head. "Remember", he said, "what ACT UP stands for." I was jolted by this, offended then angry. How dare he! This blow-in, this gauche man; how dare he and the World Bank appropriate 'what ACTUP stands for'. How dare he tell me to remember what it stands for? And as disorienting as this all was, he was cheered. All this in a hall whose walls are draped in sections of the Quilt. Where were you, feather wavers, preachers, money men, where were you twenty years ago, when everybody died? Why did those of us who somehow stayed well, have to care for them so often by ourselves? Where were you when my boyfriend, my housemates, my friends and acquaintances died early, lonely, rejected deaths? I acknowledge that things have changed, but this does not require or warrant a re-writing of our history. We have a history and it is rich in failures, triumphs and mundanities. It is not one of feathers, faith and financiers. These are arrivistes, and while they may be welcome now, they do not own what happened. I was reminded of what happened on Friday night at a production of Larry Kramer's play, 'The Normal Heart'. It should have been the Opening Ceremony.
The occasion was not entirely dispiriting; the joint recipients of the inaugural amfAR Elizabeth Taylor Inaugural Award for Recognition of Efforts to Advocate for Human Rights in the Field of HIV, were doctors Arash Alaei and Kamiar Alaei, the Iranian brothers imprisoned for providing care and treatment to people with HIV in Iran. At previous World AIDS Conferences we have badged ourselves, signed petitions and marched to free these men. The brothers spoke humbly and eloquently, thanking everyone for the support they received and committing themselves to the principles of social justice and human rights for people affected by HIV. They were an inspired and inspiring choice for this award. Well done amFar and well done IAS.
Day 1: Perspective is restored; in the plenary Anthony Fauci references Larry Kramer and 'The Normal Heart'; tells America “we can take examples from the developing world” when it comes to linking treatment and people to care; that we all “must marry the biological with the behavioural”; that we may now have the science, “but what will make it work?”
Phill Wilson, Founder and ED of the Black AIDS Institute, delivers one of the weeks' very best addresses. And calls it like it is: America has the largest epidemic in the developed world; 1.1 million people living with HIV, 75% of which are male and 25% female; 62% of which are MSM, 15,000 new infections each year, and with a prevalence rate of 3%, this city qualifies as a generalized epidemic, worse than that in Port au Prince, Haiti. But far more disturbingly, he continues, gay, black men in this city at age 25 have a 1 in 4 likelihood of being HIV+; by age 40, they have an almost 60% likelihood of being HIV+. This is America he is talking about. He then shows a slide that will re-appear and be referenced in other sessions throughout the coming week; the Gardner et al model from the University of Columbia of the 'cascade' of retention in care in HIV programs in this country. This model demonstrates that while we may be impressed by the percentage of people who know their status, this does not reflect the percentage that receives or remain in care, suppress virus and stay healthy. Wilson speaks passionately and eruditely; he too affirms that “we need to integrate the behavioural with the biomedical”; it is not, he states, an either or, but a 'both and and'. “If biomedical interventions worked alone, the epidemic would be over already.” And for civil society and NGOs in the field, his message is that they too must re-tool with the knowledge and understanding of the science, the research, the evidence, in order to move forward.
And then came Hillary Rodham Clinton. Introducing her, Michel Sidibe notes that while her responsibilities include what is happening in Syria, in Afghanistan, at the human rights commission, her presence at this conference is testament to her regard for the international HIV and AIDS agenda, her remarkable work promoting the right to health and the rights of women and girls. Her address is impressive, informed and an exemplary display of what we mean when we say that leadership matters.
Two afternoon sessions focus on social protection schemes, funding HIV programs and sustainability; themes that will resonate in presentations and discussions throughout the coming week. Linda Richter's work at the Human Sciences Research Council in South Africa looked at the results of 14 African studies, including both the RESPECT study in Tanzania and the Zomba study in Malawi, analyzing the impacts of incentive schemes in HIV programs. While these schemes were focused on issues including treatment adherence, adolescent HIV prevention and PMTCT, all studies reported positive findings extending to increased school retention rates, increased autonomy for women and better nutrition amongst children and families in general. The potential of such interventions was noted given that estimates based on data from several countries, including India, Thailand, China and Tanzania, put direct patient cost of HIV treatment at anywhere up to 100% of annual income. Conditional cash transfer schemes in Latin America are delivering similarly positive social and economic benefits. These are being replicated in Kenya, Malawi and South Africa, where amounts of $20, $11 and $35 per month respectively all showed increased expenditure on health, education and livestock. Caveats to these findings include variable outcomes and thresholds according to amounts paid -$10 per month in Kenya delivered little benefit and increased spending on tobacco and alcohol amongst men, $20 per month delivered health, education and investment benefits largely managed by women. Impacts on national social protection programs need to be investigated and further research is underway. Governments in many places have been wary of supporting such schemes, but Richter argued for their potential where increased numbers of people will be on ART for life and in need of effective social protection mechanisms. Concerns of 'graduation' were raised in question time; do such schemes promote dependency and entitlement? Michael Samson from the Economic Policy Research Institute, South Africa, reported that the evidence shows that this is not the case. Social protection schemes serve to encourage labour market activity as well as deliver health benefits.
At a 4.30 session on 'Challenges and Approaches to Sustainability, and Money', Sharonan Lynch, from MSF New York, outlined the predicament of the Global Fund as well as the predicaments the Fund is generating among recipient countries. The Transitional Funding Mechanisms replacing Round 11 allow for no new ART or DRTB treatment projects; not only have donor commitments have been shrinking over the last 4 years but the size of Global Fund Rounds have been diminishing as well; Round 8 - $2.8 b, Round 9- $2.4b, Round 10- $1.7b. While a new funding window will open in September this year, it will be over 2 years since the last successful Round was launched. Lynch noted that one of the impacts of this recent history is the perceived risk of disruption to ART and PMTCT scale-up amongst countries intending to apply. In our own region, there is good cause for such apprehension, where interruptions to previous Rounds have caused just such disruptions.
Day 2: I spend most all of this day in meetings, starting at 7am and ending at 9pm with the satellite session and launch of the joint AusAID – UNAIDS report, 'HIV in Asia, transforming the agenda beyond 2012'. This report presents a critical review of how national responses across a number of Asian countries need to re-prioritise and re-allocate resources in ways that will have maximal impact on their epidemics: essentially those resources need to be targeted to most affected and at risk populations and their needs. A panel of experts from policy, community, science and leadership from across Asia responded to the report and its findings and recommendations. While the report was commended overall, panelists nonetheless challenged some of its assertions and noted generalizations and omissions. Nevertheless, this report is a valuable contribution to informing better and more cost-effective programs in our region and AusAID and UNAIDS are to be commended for this collaborative venture. As Don Baxter and others in the audience noted, its value now depends on both of those agencies taking it to the highest levels of government and donors and on civil society taking up the report and critiquing and implementing its recommendations. We will be discussing this report at the October Australasian HIV/AIDS Conference in Melbourne.
Day 3: Despite another 7am meeting, I am determined to see sessions today. It does not happen; I spend the entire day in a constant round of meetings culminating as an observer at the first Conference Coordinating Committee meeting for IAS 2014 in Melbourne. And this excites me. Despite tiredness and elusive sleep, a couple of colleagues and I seek out a blues bar in Georgetown and are rewarded with a sublime show by saxophonist Maynard Keys and his band (check them out on YouTube) authentic jambalaya and the margarita from hell.
Day 4: While DC swelters outside in hot and humid summer, the air conditioning in the labyrinthine convention centre is arctic. As a colleague observes, more of us are starting to come down with conference 'kennel cough'. But today I am going to and staying in sessions. The plenary is given over to issues and perspectives from affected/key/most at risk/vulnerable/marginalized populations. Most of whom cannot be with us today; thank you US immigration. Nevertheless, a panel of articulate presenters, including Cheryl Overs, speak about what all the new world of cure, treatment as prevention, an AIDS-free generation, mean for gay men and men who have sex with men in Uganda and similar countries, sex workers everywhere, and young Black transgenders in the US. Or anywhere for that matter. And what is striking about each of these presentations is that for each of the speakers, it was a dedicated, specialized health service or intervention that literally saved their lives or the lives of their subjects. This must cause donors, governments and all who preach against the so called verticalisation of HIV services to pause; it is not necessarily and always a benefit to force HIV and related programs into mainstream health services. We must re-think the policy mantra of integrating HIV treatment and care into primary and public health care services simply because it 'makes economic sense', rationalizes bureaucratic and administrative sectors and supposedly leads to sustainability. None of these are necessarily true and all of them depend on setting and context. Overridingly, this mantra sounds good to donors; the donor dollar goes further, it is presumed. But what of the populations who most need those HIV services? We know, and are being presented with further research at this conference, that unless and until HIV services and dollars reach key affected populations – MSM, SW and IDU in the main – this epidemic will not end. And we also know that most of these populations in a large part of the world cannot access and are excluded from mainstream health systems. Placing HIV into public clinics and hospitals in many places means that these people will still miss out. And as our speakers this morning have shown, they will die. That is what happens. And ASHM members should be aware that this is precisely what is occurring in a number of our regional countries where not only are you shut out of mainstream health services if you are gay, a sex worker or using drugs, but simply because you have HIV. But I wonder if any of the donors or mainstreaming advocates in this vast hall are even hearing this message.
At the later morning session, 'Show Me the Money' we hear good news and bad; while international investment in HIV is flat-lining, for the first time domestic investment has exceeded international investment. Between 2006 and 2011 there has been a 50% increase in the levels of investment by national governments in their own programs. Both China and India now support over 90% of their HIV programs. 'Shared responsibility' is music to donors' ears.
Michel Kazatschkine, a friend to ASHM, delivers a paper on the current funding landscape, and sounds a warning. While many here are congratulating national governments for stepping up to the plate and funding far greater proportions of their own HIV programs than ever before, Kazatschkine points out that just as countries in the global south are showing resilience and ability to scale up, international funding support is wavering. This sends a mixed message to political leaders and risks compromising notions of ownership, sustainability and prioritization; experience has shown that international funding is intimately linked to political will and leadership. And political will is fading; little attention was given to matters of health and HIV and AIDS at the last G8 meeting. The G20 is yet to engage as it should. The Eurozone crisis is affecting donations to the Global Fund and in 2013 PepFar is up for re-authorization. The impacts of these developments are already being seen in the field; testing rates are slowing, there are rationing and delays in treatment implementation, progress is being scaled down in many places, and Eastern Europe and Central Asia are being neglected. Domestic funding may be increasing but this is only at the level of funding as a numerator and this is largely restricted to the BRICS group of countries (Brazil, Russia, India, China, South Africa); as a denominator it has decreased. What is needed is an increase in this funding as both a numerator and a denominator. The decrease in international funding is, Kazatschkine notes, a paradox after more than 10 years in which health assumed a priority in the global agenda. In conclusion, he recommends making the case for more HIV and AIDS money with stronger evidence of program benefits and a tax on financial transactions, such as that announced at the beginning of this conference by the French President, which will take effect on August 1. More multilateralism is needed and not less; multilateralism can decrease transaction costs, aligns money with agreed goals and is consistent with 'shared responsibility'. Consequently, it is the logical platform for delivering on global public goods.
A late afternoon session, 'HIV Diagnosis and HAART Initiation-Don't Be Late' reminds people that in much of the world, late stage presentation is still very much the norm (and this resonates in our own region). Brenda Crabtree notes that between 24% and 77% of presentations in developing countries are with AIDS defining illness. This is sobering information when plenaries and other sessions are trumpeting the 'light on the hill' of cure and an AIDS free-generation… Many, many people are still late to test and late to engage with care; consequences of this include increased risk of morbidities and mortality, decreased virological suppression, increased risk of hospitalization. Angela Patterson presents an analysis of the cost effectiveness of more frequent screening of MSM in the US; a population which constitutes 61% of HIV diagnoses in this country and amongst whom, especially younger MSM, incidence is rising. Later Jens Lundgren from Copenhagen presents on the characteristics of late presenters across several countries in Europe and concludes that 'if we had a late presentation rate among MSM less than 20% we'd be doing pretty well.'
Day 5: The kennel cough is getting louder and more common; just as well this is the final day in the freezing halls of the Mount Vernon Convention Centre. A morning session on HIV and TB – something for everyone. In his introductory remarks Mark Harrington says that for all our positive talk of cure- and he is not diminishing this – we must remember that TB has been around with a cure for a lot longer than HIV has been with us. And as many people still die from curable TB as die from incurable HIV illnesses. Alison Grant from the UK starts her address by stating "treatment as prevention is not new, we've been doing it for decades" What is this? Revenge of the pulmonologists? This is, in fact, an excellent session. Speakers cover developments in treatments, diagnostics, HIV co-infection, paediatric issues and look to the next ten years and what can be anticipated. The final presenter is Whoopi Goldberg, a UN Special Ambassador, who speaks passionately about the impacts of TB and HIV on women and children. And who makes us laugh. And at this stage of the conference, that is not necessarily a bad thing.
The End: So there it is; another exhausting and exhaustive International AIDS Conference. 24,000 delegates, Hillary Rodham Clinton, Elton John, Bill Gates, Laura Bush, Sharon Stone, Whoopi Goldberg, Annie Lennox and William Jefferson Clinton. Sessions that stimulated, challenged, shocked, frustrated, angered and excited me. Days that started at 7am and finished at 9pm. Meetings of dubious, productive and exciting outputs. Ideas to emulate, explore, implement and evaluate upon return home. It is also inspiration and the desire to work better, do more, learn more. Many have been saying this conference is 'too American'. And there is cause for this comment, but after 22 years away, this is not surprising. And if the single impact of this conference is to further generate, enhance and sustain a greater response at all levels to HIV in America, then it will have been well worth it. They really need that to happen.
And the next one is ours!