The Uncounted by Sara L.M. Davis
My rating: 5 of 5 stars
In today’s world in particular, there are days when it seems as though we are drowning in information. Too much data. Too much ‘stuff’ to process and make sense of. That feeling is only partially true, however. Across various areas and arenas, we know far too little, particularly when we focus on issues surrounding health and human rights. All too often we take the absence of information or data or evidence as a sign that we may relax a bit.
We desperately need to shift that thinking. The Uncounted, by Sara ‘Meg’ Davis provides a road map for how we may begin to shift our thinking and perspectives in order to adjust how, amongst whom and what we collect data in a relatively simple way, and in a way which may pay huge dividends, particularly amongst those most in need and previously most neglected in policy planning and financing.
‘The Uncounted’ is a fantastic read, one which profoundly challenges the notion that in the absence of information or evidence we don’t need to worry about issue X. That is, if we carefully examine those variables for which we have no data or evidence, perhaps upon digging deeper and enlisting assistance from those more acutely and intimately aware than we are, we will find previously hidden information and data. And, that data and information are likely to radically shift how we design programmes or policies on various issues. We will no longer be able to simply dismiss an issue as unproblematic. Quite simply, ‘The Uncounted’ provides a profound argument for carefully considering how we examine and apply the absence of evidence as an indicator.
‘The Uncounted’ is rich in ethnographic descriptions, documenting the various assumptions made by multilateral agencies charged with dispersing funding to and establishing guidelines for countries in how they respond to HIV, tuberculosis and malaria (e.g., The Global Fund to Fight AIDS, TB and Malaria, UNAIDS, WHO, PEPFAR, etc) and local-level agencies and individuals best situated to argue for expanding programmes and funding schemes within communities. For those unfamiliar with such agencies, Dr Davis disentangles these various personalities and agencies rather neatly, making it clear who does what and whose voice is perhaps most necessary in deciding upon programmes and policies to address HIV in particular. Following the progress and steps necessary to count the uncounted within the Caribbean region provides evidence for how we can begin to shift our thinking and truly ensure full inclusion of all individuals affected by HIV and specifically those least likely to date to receive crucial services and support.
Reading ‘The Uncounted’ during a global pandemic proved rather surreal,not simply because some of its key characters are also playing a crucial role in current events vis-a-vis Covid-19. As our global health-related realities have been thrown into chaos this year with the emergence of Covid-19, I’m curious to see how various elements of Dr Davis’ careful and thorough work play out. Whilst focused primarily on HIV, and the very real oversights in counting typically hidden populations such as men who have sex with men, transgender people, sex workers and people who use drugs, certainly many individuals, and perhaps the most vulnerable, will go uncounted in the wake of Covid-19. Will health, social, and economic policy makers and planners at local, national, and international levels solicit the perspectives from those at the community levels most intimately associated with the epidemics and acutely aware of problems in providing treatment, care and support to those affected in order to understand who, what, why and where? Or will they rely on the absence of evidence as evidence of absence simply because individuals are not counted by the powers that be? How will key populations be accounted for? Will they?
My hope is that the powers that be across power structures would heed the advice and road maps provided by Dr Davis. The reality is that in some places, that advice and those road maps are not being considered. And, in those places it seems as those Covid-19 is raging unchallenged. [Insert heavy sigh here.]
‘The Uncounted’ provides this cynic with a bit of hope, however, particularly with regards to HIV. Hope that we expand our perspective ever so slightly, yet in a way which we can make a huge difference to communities and key populations who may have previously faced stigma, discrimination and institutional neglect, and who may finally receive the crucial support to transform structures that place them at the response to HIV. It won’t be easy, but it is necessary. And, to my mind, long overdue.
Clearly, we can no longer that that ‘absence of evidence as evidence of absence’.
View all my reviews
Category Archives: HIV
On World AIDS Day 2018
This World AIDS Day, as with many in the past, I am hopeful. More cautiously optimistic than equally hopeful, however. Thirty years ago, the first World AIDS Day passed, allowing us to collectively raise our voices to raise awareness of HIV. Globally and locally.
This morning, as I scrolled through my news feed, in addition to the traditional AIDS red ribbon tree of life I’ve posted for years on this day, another image gut-punched me, just as it did the first time I saw it and every time since.
This image of the San Francisco Gay Men’s Chorus reminds me why this day isn’t so much a simple celebration of how far we’ve come, but of how vigilant we must remain in our resolve to continue to respond to this most pernicious virus. But, more so, we must resist and overcome the various prejudices and judgements attached to HIV. Far, far too many have died senseless, needless and agonising deaths only because we refused to act to prevent further infections, because we isolated and demonised those living with HIV, and because we refused access to live-saving and life-preserving treatment for those who desperately needed it.
Why?
Fight AIDS, not people affected or living with HIV. Fight the damn virus and the cultural, social, political and economic institutions which continue to allow it to spread and allow people to die when, today, they don’t need to. Fight the injustices borne through stigma and fear that allow the virus to flourish.
Do not fight the individuals most affected and least wanted by society.
HIV doesn’t care where you live, what you look like, what you do for a living to simply survive. Nor does it care who or how you love.
Today, and every day, we must collectively remember what inaction and isolation do to those affected when society shuns them and deems them unworthy and undesirable. Every. Single. Day.
So, on this World AIDS Day, here’s to all those affected and living with HIV, and here’s to all those who continue working damn hard and often thanklessly to ensure no one is left behind and that we can all live in a world more just and more equitable. For all.
And, here’s to those we failed. Your memory lives on and you will not be forgotten.
On World AIDS Day 2017
1 December every year is World AIDS Day.
This year’s theme is ‘My health, my right‘. That is, one’s right to health represents a fundamental human right, and one’s right to health encompasses and extends to rights to sanitation and housing, nutritious food, healthy working and living conditions, education and access to justice. All of which are accessible free from stigma and discrimination, and free of violence.
I may no longer devote much of my working life to issues surrounding HIV. But, I still very much believe in continuing to focus on the response to HIV and ensuring that no one is left behind in our local, national, regional and global responses to HIV and various other related issues.
On this World AIDS Day, much like each and everyone before it, my thoughts are with all those living with HIV first and foremost. My thoughts are also with those who have died far, far too young and long before they needed to. Their faces remain at the forefront of my mind on many days, but particularly today.
I also extend my thanks and gratitude to all of those who tirelessly continue to devote their voices, time and indefatigable energy to making sure others are not left behind. All those who work on HIV-related issues ensure that people living with HIV continue to receive the attention they need, at times desperately so. From activists to policy makers to aid workers to healthcare professionals, those working on HIV also ensure that those affected by HIV are placed at the centre of discussions on HIV policy, funding and programming, and highlight the necessity of inextricably linking access to health as but one fundamental human right.
Health. Gender equality. Freedom from harm. The freedom to make decisions about one’s health and one’s own life. Respect and dignity. These are but a few of the words which come to mind on each World AIDS Day. And, they represent a world we can look forward to, hopefully sooner rather than later.
Here’s to all those living with, affected by and responding to HIV. You deserve so much more than one day each year. You are worth so much more than one day on a calendar. May we collectively never forget your worth.
Fact: Child brides exist
A particularly gruesome headline can bring attention to issues which otherwise garner far too little coverage. This morning, one such headline has been on my mind:
There is some question regarding the veracity of the reporting in the wake of regional outrage. True or not, child brides as young as 8 years old exist in many parts of the world. Very few of those lives spark any interest at all and never appear in headlines until tragedy (of another sort) strikes.
Girls Not Brides estimates that each year 14 million girls are wed before they turn 18, the age which is internationally recognised as the point at which a girl transitions to womanhood. One in seven of those 14 million girls marry before reaching the age of 15.
It isn’t just that girls under 18 marry, which is troubling. It’s that the majority of those young girls are forced to do so, and more often than not are greeted with husbands who are much, much older. A rather chilling collection of photographs and a short film (below) by Stephanie Sinclair vividly illustrate the reality of child marriage for many young girls across cultures.
In addition to the horror of rape, many girls who are married off far, far too young face a host of risks to their health and well-being. Most likely already living in poverty, they are more likely to experience complications due to pregnancy and childbirth given their age, and they are at risk for sexually transmitted infections including HIV. Unable to emotionally and physically deal with married life, domestic abuse and violence are also likely making the transition from girl to woman a living nightmare.
For some young brides in Afghanistan and India, their situation is so unimaginably horrendous that self-immolation is preferable to returning to abusive, much older husbands.
Whether the headline of a single 8-year-old Yemeni girl is fact or fiction, the International Centre for Research on Women estimates that child marriage will be a reality for more than 142 million girls over the next decade globally if current trends persist. No continent is immune to this reality, and no single culture, religion, or ethnicity is ‘to blame’. It happens everywhere.
Whether that headline is true or not, hundreds of thousands of young girls have suffered emotionally and physically as a child bride on their wedding nights. Some wedding gift, eh?
Hope Where There Is None
For more than eight years, Moscow, Russia was my home.
As cliche as it is, I learned more about myself in that time than I ever thought possible, met amazing people along the way, and discovered a place that had been mythological in my post-Cold War imagination. As a child of the ’80s, Russians were ‘the enemy’. At moments during my stay there, they took on that persona to a tee. However, that was the exception, and I loved my life in Moscow and wouldn’t trade any of the time I spent there. So many individuals welcomed me as the ‘silly American’, and I miss the daily interaction with them despite the difficulties inherent in contemporary Russian life.
Perhaps that’s why it pains me to hear of how little things have changed in the five years since I left. Russia has the dubious distinction of being one of the few remaining countries in which the HIV epidemic continues to expand. What’s more, it has occupied one of the worst of all statistics as the country with the fastest growing epidemic in the history of the global pandemic. That is not an accolade any country should aspire to and most governments would take action to remedy it quickly.
That hasn’t been the case in Russia. In fact, the opposite holds true.
Primarily fueled by the sharing of unclean injecting equipment and compounded by one of worst tuberculosis epidemics in the world, the Ministry of Health has maintained its hostility towards ‘Western’ or ‘foreign’ evidence-based practices and prevention methods which could save a generation of young Russians and prevent the further spread of HIV. Many small-scale local-level projects were funded not by domestic sources by but international agencies such as the Global Fund to Fight AIDS, Tuberculosis and Malaria. Distributing clean paraphernalia and informational materials on safer sex and drug use, providing counseling and social support services to those who had no where else to turn, and delivering training seminars to local-level healthcare professionals to introduce international experiences and human rights-based approaches have helped immensely. Yet, as obvious as it might be, Russia is huge and reaching every corner without governmental support is impossible. Furthermore, as the funding from international sources has dried up, many of those local-level initiatives have had to close and left a gaping hole for those least accepted and cared for in Russian society.
It’s quite simply heartbreaking.
Much of our news in the West focuses on the Russian elections. However, there are many other unheard stories, both of unimaginable determination and heroism, as well as of tragedy and despair. The Andrey Rylkov Foundation has made it their mission to work towards a humane and just approach to drug use and fight for the rights of those who most need it, and listen to and respond to those most ignored. Engaging with drug users, they provide harm reduction services in and around Moscow. They also work to highlight the extreme positions of the Russian government towards drug treatment and harm reduction strategies which have been proven to help prevent HIV. Spend 20 minutes from your day and watch this video about what they do and why.
Is there hope? There must be. Is failure an option? Not really. Life in Russia is not easy. But, working with individuals who are considered social outcasts, undesirable, and many perceive the best solution is to simply ‘let them die’ is unimaginably difficult. But, it’s well-worth the struggle if it improves the conditions for even a few individuals at a time.
So, as insignificant as it may be, I just want to thank Anya and all those who continue to do this type of work. Keep fighting the good fight!
World AIDS Day 2011
There are very few days anymore when I do not think of HIV or those who have been lost to the epidemic in the last 30 years. Alas, it is World AIDS Day so I’d like to dedicate at least a tiny space on my wall to this occasion. That is not to say that AIDS occupies a tiny space in my mind or heart.
It’s a bit bittersweet this December 1st. We are for the first time in the history of the epidemic painfully close to prevailing in our aim of reaching zero new infections, zero discrimination and zero deaths Treatment is now proven to be effective with less toxicity and, as an immeasurable added bonus, also prevents the transmission of the virus. The price of drugs have decreased dramatically in the last decade and thanks in large measure to programmes funded by The Global Fund to Fight AIDS, Tuberculosis and Malaria and PEPFAR millions of people who previously did not have access to treatment are now enjoying healthy lives once again.
These are great bits of news individually and collectively. They give hope to many. And, yet, there is also much to be less pleased about.
Within the last few weeks, The Global Fund has had to cancel its next round of funding amid very real and shocking financial shortfalls. Why? Because countries including my own which previously promised to contribute to the Fund have not come through. Without those commitments honoured, there is no way to fund programmes in some of the hardest hit and most impoverished regions of the world. Without those funds, those who have been placed on treatment may now find that the medications which have restored their health and improved their quality of life may no longer be available. Without those funds, in short, individuals will die. Senselessly and needlessly.
Thus, on this World AIDS Day, I find myself conflicted. I’m hopeful and angry at once. And, that to me is the essence of this epidemic.
Despite these bittersweet truths, I am mostly and profoundly grateful to know each of those whose stories collectively and individually are far more meaningful and profound than the simple slogan for UNAIDS and World AIDS Day this year or the economic reality of AIDS programming we face today.
So, here’s to all those living with HIV and to those we have lost far too soon. In particular, I’d like to thank those who have shared their stories with me—you have touched me in ways I cannot ever hope to express and honoured me in ways I’m not entirely sure I deserve. I remember you every day and not simply on World AIDS Day. Here’s also to the often invisible and forgotten individuals who dedicate their lives thanklessly to providing much-needed treatment, care and support to those affected by HIV.
‘Rights Here, Right Now!’
The XVIII International AIDS Conference gets underway in Vienna this week.
This week, an estimated 25,000 individuals from across the globe who all work in one way or another on issues related to HIV will descend upon the fine city of Vienna for the XVIII International AIDS Conference.
The theme for this year’s event is ‘Rights Here, Right Now’, which refers to the connection between HIV and human rights.
How far have we come in meeting the needs of those affected by HIV in the past 25 years or so? Where is more work yet needed? How do national responses compare to one another? What success stories exist and how may they be adopted to other contexts? And, what human rights violations continue to undermine the responses to HIV, locally, nationally, regionally and globally?
These are a few of the questions that come to mind before the event. The first of those in particular has been on my mind lately.
I recently caught the Frontline special report from 2006, The Age of AIDS. This sobering documentary chronicles the early days of the epidemic in the US, and then provides an overview of the global epidemic. It is available to watch online, and I encourage everyone to spend the time doing so.
What struck me is that many of the same issues that plagued the responses in the early stages of the epidemic continue to undermine our work. Stigma, discrimination, drugs pricing policies and treatment availability, and a lack of basic information at times. Strong leadership along with political will and determination could remove and/or minimise these barriers. And, would go a long, long way in honouring the human rights of those living with and affected by HIV.
There is a moment in the documentary when Dr Jonathan Mann, one of the early pioneers in the response to the global pandemic, states, ‘It’s about basic equity, simple justice’. This short yet poignant declaration was in reference to addressing the stigma and discrimination and horrendous human suffering experienced by those who literally had no hope and faced certain death in the early stages of the epidemic.
It is still about equity. And, it is still about social justice more than 25 years on.
In the current economic climate, many programmes which have allowed millions of individuals who had no hope and were close to death access to live-saving treatments (which have improved their overall quality of life) will come to an end. As programmes lose vital funding from development aid programmes, the real tragedy is that individuals will suffer. Individuals will die. Most of those individuals will be those who live in lesser developed countries and have no where else to turn for assistance.
Is that fulfilling the commitment to universal human rights we have argued and fought for?
A peaceful demonstration will be held Sunday, 18 July, 17.
A peaceful demonstration will urge governments and global leaders to honour their commitments to fund AIDS programmes
00–19.00, at the Vienna Conference Centre, to coincide with the opening ceremony. Governments across across the globe have failed to fulfill their commitments to fund AIDS treatment and other health needs.
And, they must be held to account.
I for one will join others in Vienna to protest the broken promises and threat to upholding the human rights of those affected by the epidemic on Sunday, 18 July. I will be there not for my own rights, but for those who have no other voice. I will be there for those who are not in Vienna.
‘And I am the Drug Policy Alliance’…
I’m often quite happy to miss the ‘news’ on main stream television, particularly when I read of interviews and exchanges such as the recent ‘debate‘ between Fox News and the Drug Policy Alliance.
The Alliance has just released a rather poignant video highlighting the need for a rational, evidence-based and research-informed approach to drug policy. Rather than focusing our efforts and resources on criminalisation and incarceration, we should re-focus our attention on a human-rights based approach to drug use and policy. I fully embrace this approach, which is not at all surprising given what I do for a living.
A smattering of viciousness and derogatory language from Mr O’Reilly and his co-host Megyn Kelly highlight their inability to understand the issues at stake and how damaging and unhelpful the so-called ‘War on Drugs’ has been and remains.
Thus, the message in the Drug Policy Alliance’s latest video was completely and utterly lost on them. In addition, their segments (three, that I could find) were not based on intelligent debate, but on rhetoric and unsubstantiated claims, many of which are simply false.
Drugs have been legal and regulated in several countries to varying degrees for many years now. I spend about 25% of my time in the Netherlands these days, and there is very little in the way of ‘drug-related crime’. In fact, within the last year or so, I was told by Dutch that the state was forced to close prison facilities because they did not have enough prisoners to fill them. That is, prisons were sitting empty rather than bursting to capacity such as those in the US. Think about that for a moment.
John Stossel, also from Fox News, quite rightly made the point to Mr O’Reilly that prohibition drives the behaviour underground. Indeed. The prohibition of drugs has worked much the same way as the prohibition of alcohol—people will find ways around the law and will go to great lengths to hide it from the authorities.
The real shame in driving behaviours underground is that even if an individual does wish to seek help for dependency or any other medical and/or social issues, they are less likely to do so if they believe they run the risk of incarceration or any sort of reprimand. Thus, any programme designed to reduce drug- or substance-related harm, such as needle-exchange programmes, are less likely to reach them. In an age of HIV, this represents a tremendous shortcoming and travesty.
I support and applaud the Drug Policy Alliance in their efforts to advocate for a human-rights based approach to drug use. And I fully support an end to the War on Drugs.
Extra-ordinarily (un)common
I’ve been thinking a lot lately about things which used to seem exceptionally extra-ordinary that have become rather banal and common.
What started this train of thought was the tragic story of a young man from the UK who summited Mount Everest but ultimately died on the mountain after suffering from blindness and not being able to climb down unaided. Rather than risk the lives of the entire team, he was left to die alone on the highest peak in the world.
Many have died there undoubtedly. But, what struck me was how many actually attempt to summit Everest each year now and how many of them die in the process. It seems to me that attempting a super-human feat such as summitting the highest peak on the planet should not be a goal undertaken by just anyone.
But another story of ordinary individuals attempting and succeeding in exta-ordinary feats also serves to inspire me.
Recently, several individuals from a South African-based organisation called Positive Heroes ran an 89-km marathon. What made this such an amazing tale is that all of the individuals are HIV-positive. Further, this was not their first time running the marathon and they’ve managed to incorporate the rigid routine of taking their anti-retrovirals during the marathon.
These are truly positive heroes. They demonstrate in an extra-ordinary way the amazing feats that ordinary individuals can aspire to and use as inspiration to others.
Congratulations to the ultra-marathon runners on their success and victory! And, many thanks for demonstrating the true meaning of extra-ordinary.
A Tropical Fish Out of Water 