The major focus in both national and international responses to HIV pandemic is now on ensuring that as many positive people as possible have sustainable access to the specific drugs. But, whatever their medical efficacy they can only ever provide a partial solution to what has become a ‘post modern plague’ in so many of the poorest parts of the world. The coming decades are likely to be ones of increasing need and declining resources. Hence optimistic suggestions that drugs alone will soon bring an end to the pandemic will need to be treated with the greatest caution
by Lesley Doyal*
Emeritus Professor, School for Policy Studies
University of Bristol, UK
Why ’Big Pharma’ Alone Cannot End the AIDS Pandemic
Debates about the pharmaceutical industry have received new impetus over the past decade with the introduction of antiretroviral therapy (ART) for many of the millions diagnosed as HIV positive. Though these drugs do not offer a cure they do hold out the possibility of major improvements in wellbeing and life expectancy for those who are able to access them.
The major focus in both national and international responses to the pandemic is now on ensuring that as many positive people as possible have sustainable access to these drugs. But as we shall see, whatever their medical efficacy they can only ever provide a partial solution to what has become a ‘post modern plague’ in so many of the poorest parts of the world.
When ART first became available in the mid 1990’s, it was confined to high income countries with sophisticated health care systems. Some commentators argued against attempts to extend access to the poorer parts of the world on the grounds that lack of adherence would cause what they called ‘antiretroviral anarchy’. However many others campaigned against such a ‘double standard’, demanding a more equitable distribution of drugs (Chan 2015 ch3).
Early attempts to achieve more widespread dissemination were, of course, limited by the high cost of the drugs themselves. This led inevitably to lengthy battles with pharmaceutical firms over pricing as well as issues of intellectual property (Chan 2015). But aided by the production of substantial quantities of generic drugs in countries such as India and Brazil the wholesale price of first line drugs fell markedly after 2001. This made possible a dramatic increase in the number of people receiving treatment. By 2011 this figure had risen to a record 9.7 million compared to just over 8.1 million in 2011 – an increase of 1.6 million in one year alone (WHO,UNICEF& UNAIDS 2011). But many problems still remain.
First, there are still marked inequalities in access to ART. The most obvious of these are differences between rich and poor countries. Currently treatment in the US and Western Europe is accessed by more than 50% of all those known to be in clinical need. In Eastern Europe however the figure is only 21% and in the Middle East and North Africa it falls to only 11% (UNAIDS Fact Sheet 2014).
These inequalities partly reflect the wealth or poverty of individual countries and the strength or weakness of their national care systems. But lack of fairness is also evident within countries with members of marginalised groups being disadvantaged compared with their HIV positive counterparts. Studies from different parts of Africa, for example, have shown that men who have sex with men (MSM) are significantly disadvantaged while in the USA and Europe, injecting drug users (IDU’s) will also face additional challenges. In many settings, similar obstacles face male, female and transgender sex workers (Global Commission on HIV and the Law 2012).
If these inequalities are to be tackled, more attention will have to be paid to the social, cultural and economic obstacles facing disadvantaged groups or positive individuals who cannot make their way successfully through what has been called the ‘treatment cascade’ or care continuum.
Who tests and who does not?
The first stage of accessing care is of course testing, and many fall at this early hurdle. A recent estimate suggests that in the most affected African countries, only about 10-12% of people have been tested for HIV and know the result (Obermeyer and Osborn 2007). Worldwide, it is estimated that only about 40% of positive people are aware of their status. This reflects in part the lack of testing facilities. Though the number has increased significantly in recent years they are unevenly distributed with only around 5.5 per 100,000 people in low and middle income countries (WHO, UNICEF & UNAIDS 2011).
But even when facilities are available a wide range of factors may prevent individuals from testing. Of course many will simply be afraid of discovering that they have a serious and potentially fatal illness. But both women and men also report that they are afraid to test on the grounds that if they are found to be positive they may be treated badly by partners, family members and the wider community (Frank 2009).
In most settings women are more willing to be tested than their heterosexual partners. This is partly because they are offered (or required) to test in the context of their use of reproductive services. But it also reflects the reluctance of many men to threaten their masculine identity through appearing weak and vulnerable. As a result many are tested at a later stage than their female counterparts and hence will frequently have a worse prognosis (Skovdal 2011).
A number of studies have also shown that many are reluctant to test because the centres are perceived to be stressful. Most are overcrowded, with staff themselves under huge pressure and too often insensitive to the needs of those they are testing. Service users in many settings have reported a lack of respect as well as a marked lack of confidentiality especially if they test positive (Angotti 2010; Butt 2011).This will of course , be especially problematic in the small close-knit communities where many of the poorest people who are positive struggle to survive. This reluctance to test clearly presents a major obstacle to the success of any drugs based strategy.
What happens after testing?
Even if they are tested there will often be difficulties accessing treatment for those who are found to be positive. While some will have a CD4 count low enough to necessitate the immediate prescription of drugs others may have to wait until their condition worsens. As a result they may be lost to care in the intervening period. And even if treatment is successfully initiated there can be no guarantee that individuals will be willing and/or able to follow medical protocols.
When individuals do drop out of treatment this lack of ‘adherence’ is too often blamed on the individual’s irrationality or lack of will .However recent research has shown that a wide range of economic and social obstacles may face those who have both the need for the drugs and (at least theoretically) the access (Russell et al 2010; Nguyen et al 2007).
Recent US studies have identified the young, the less educated, the poorest, those who are black or Latino and those who do not have medical insurance as being least likely to continue their treatment (Horstmann et al 2010) Injecting drug users too are likely to drop out more frequently. While discrimination may be an important factor, it appears that in most parts of the world it is material and social deprivation that present the single most important obstacle to successful treatment.
Depending on the financial arrangements in place, antiretroviral drugs may be unaffordable for individuals. And even when they are free there may be charges for blood tests or any other treatments needed for opportunistic infections. There have also been a number of reports of corruption in settings where patients are forced to pay bribes (Zimbabwe Lawyers for Human Rights 2010).
As well as the cost of treatment itself the expenses of transportation to the clinic are frequently mentioned as obstacles to sustainability of therapy. Many studies from rural African settings in particular have highlighted the struggles faced by women in their attempts to balance the competing demands of transport, housing and school fees (Tuller et al 2010).
The cost or unavailability of food is also frequently mentioned as an obstacle to appropriate drug use across a range of settings. Lack of food is likely to exacerbate the side effects of ART as well as increasing the patient’s appetite and making them feel hungrier. Thus the medical requirement that the drugs be taken with meals may be impossible to fulfil in situations where food itself is short to come by (Hardon et al 2007).
The complexity of these obstacles in what are often very poor subsistence economies may well be exacerbated by the irregular supply of drugs and the lack of choice for service users. Being HIV positive is itself a major cause of insecurity with individuals having little knowledge of if and when their health is likely to deteriorate.
This will frequently be worsened in situations where drug supplies are intermittent as a result of inefficiency in distribution, corruption, social conflict or the natural disasters such as floods or earthquakes that are more common in resource poor settings. Not surprisingly, access to ART is often given little or no attention in the context of such crises yet for individuals it is of critical importance to their survival (Veenstra et al 2010).
A number of studies have shown that harm caused by institutionalised insecurity can be very severe and will often lead individuals to drop out of treatment. While they may begin with hope, this will often be dispelled in the case of drug shortages and lack of appropriate testing and monitoring equipment (Bernays et al 2010).
For many this will be highly stressful with increasing levels of insecurity and uncertainty. Not surprisingly patients find it especially difficult to deal with gaps in treatment or with unexplained changes of drug that appear to have no medical rationale. New combinations are often difficult to get used to and may produce side effects that individuals find unacceptable.
Many service users in situations of dependence also report feeling pressured to change their lifestyle as ‘positive living’ is increasingly stressed by heath workers, policy makers and funders (Nguyen et al 2007). A major requirement will be public disclosure of their status which many will be reluctant to do, having spent much of their time and energy trying to maintain secrecy.
Telling partners can be difficult especially for women who may be afraid of a violent response. For men on the other hand the requirement to ‘live positively’ by avoiding alcohol, cigarettes and unsafe sex may mean the loss of what they perceive as central to their masculinity (Mfecane 2007). For both women and men the requirement to always engage in safe sex may also place major constraints on plans they may have for creating a family (Richey 2006).
It is clear then, that while ART may be effective in ideal circumstances this does not apply to the situation of the majority of HIV positive people in low and middle income countries. As we have seen many have no access at all while others are unable to optimise the potential effects of the therapy as a result of economic and social circumstances as well as the duties, responsibilities and attachments they have to others.
What of the future?
Despite these problems, universalising access to ART remains the central theme of the global response to HIV and AIDS. The notion of ‘Treatment as Prevention’, or TASP, is intended to end the pandemic by ensuring universal access to drugs at an early stage for those diagnosed as positive. It is assumed that this in turn will reduce their infectivity and hence limit the spread to others. But how effective is this likely to be in the wider context of economic recession and growing inequality?
Increased access to treatment will mean a huge increase in the number of people living with HIV who will continue to be in need of drugs throughout their lives. Many will eventually need the much more expensive second and third level drugs. Hence much more investment will be required not just in the production and distribution of drugs themselves but also in the strengthening of health systems and the training and employment of health workers.
However the last few years have seen a continuing decline in available funding. Over the past two decades multilateral, bilateral and philanthropic organisations including The Global Fund, PEPFAR and the Gates Foundation have provided about 60% of all external HIV and AIDS funding to sub-Saharan Africa (Ravishankar et al 2009). The Global Fund has been especially important providing one fifth of all resources for HIV .
The percentage of countries where antiretroviral treatment programmes were adversely affected by reduced external funding rose markedly between 2008 and 2009. Eastern Europe and Central Asia have been particularly vulnerable to the effects of reduced external funding and the economic crisis. Less than a quarter of people in need of treatment in the region are now receiving it with drug stock-outs common and government health expenditure on HIV and AIDS treatment programmes falling sharply.
Not surprisingly the burden of funding is now falling increasingly on individual countries. Domestic spending on HIV care in low- and middle-income countries is already increasing, going from USS$ 3.9 billion in 2005 to nearly $8.6 billion in 2011. Over the next decade the growth rate of a number of the middle income or BRIC countries (Brazil, Russia, India and China) should enable them to meet the needs of their own positive citizens, provided they have the political will to do so.
But the fact remains that for millions of people in the poorest settings, domestic funds will simply not be available. High levels of indebtedness, disadvantageous international trade policies and structural adjustment have limited the volume of national expenditures on health care (AIDS2031 2010). A recent UNAIDS document estimated that the cost of funding HIV treatment will have peaked by 2030 (UNAIDS Fact Sheet 2014). However the coming decades are likely to be ones of increasing need and declining resources.
In the context of growing global inequalities there will inevitably be major questions over the funding of treatment. And even more importantly there is little sign that the lives of those in the greatest poverty will be improved to the point where they can take optimal advantage of available services. Even with improvements in the availability and affordability of antiretroviral drugs, many of those who are HIV positive will not be able to optimise their wellbeing without radical economic and social change (Doyal with Doyal 2013 pp 169-172 and 183-185). Hence optimistic suggestions from New York and Geneva that drugs alone will soon bring an end to the pandemic will need to be treated with the greatest caution.
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For further elaboration of these ideas as well as a broader commentary on the pandemic see Doyal L with Doyal L (2013) Living with HIV and Dying with AIDS: Diversity, Inequality and Human Rights in the Global Pandemic Ashgate
* Lesley Doyal is Emeritus Professor of Health and Social Care at the School for Policy Studies, Bristol University, and has just completed six years as a Visiting Professor at the University of Cape Town. She has published widely in the field of international health and health care with a particular focus on gender. In this capacity she has acted as a consultant for a number of organisations including WHO,UNDAW,Global Forum for Health Research and the British Council.In recent years she has worked extensively in the area of HIV and AIDS using a combination of political economy, ethnographic and intersectional perspectives. Her latest book has been widely acclaimed as the first attempt to provide a global and interdisciplinary approach to life with HIV. Entitled ‘Living with HIV and Dying with AIDS:inequality, diversity and human rights in the global pandemic’ it is published by Ashgate.