The greatest paradox of the HIV pandemic is that, although the virus itself is relatively new, those who are affected die of opportunistic infections that have assailed the human population for generations. Many of these infections are preventable or treatable, and although their impact can be alleviated by the provision of antiretroviral (ARV) medications, in areas where these are unavailable, opportunistic infections wreak significant damage.
The Holy Grail of “universal access” dominates the discourse surrounding HIV and AIDS: The notion is that all of the six million affected people who require ARVs should have access. Laudable in itself, this is proving a protracted and complex process, for it is not simply a matter of availability. According to Garrett (2005),
Introduction of ARV treatments to needy nations is essential. But it is not risk free. Nations in the grip of the pandemic may need to make dangerous choices regarding prioritizing of access to the drugs, and risk alienating populations not granted access to the vital drugs … And any implementation of HIV treatment efforts will require costly investment in health infrastructure, possibly at the expense of other social programs. (p. 12)
Garrett pinpoints the essential complexity of ARV provision—not as simply a matter of availability, but as part of a distribution and monitoring infrastructure. This difficulty introduces a feeling of unease for those used to a Western, rationalist view of disease management, especially one as high-profile as HIV. If there is a pathology that will benefit from medication, then the drive to provide that medication should be the raison d'etre for all activities from that point onward.
This approach generally works in wealthy countries, but as Garrett suggests, elsewhere the picture is far less clear. Garrett's report considers the notion that interventions in countries with a high prevalence of HIV must assume that ARVs will not be available for some time. It describes a campaign to galvanize civil society to ensure that a broad spectrum of care is available for people living with HIV/AIDS in the absence of ARVs. By so doing, survival can be maximized until these treatments are available.
The spread of HIV continues, and recent statistics and reports (UNAIDS/WHO, 2004) confirm that it is low to middle income countries that are most severely affected. In addition, where HIV is endemic, significant social and economic consequences are either current or expected in the coming years, as highlighted in the recent report of the United Nations Development Programme (2005).
Countries including China are just entering the AIDS arena. Countries including India that currently have medium levels of HIV are expected to have a rapid increase in new infections. Countries including Uganda that made significant progress in stemming the tide of HIV seem to be adopting a much more principled—and some would argue, less effective—stance against the virus.
In some regions, HIV is out of control. Treatments are available, of course, if required, but of the current six million people who require them, only one million currently have access (World Health Organization [WHO], 2005a). The remaining millions are therefore exposed to a range of opportunistic infections and, depending on their location, a high level of mortality and morbidity. In the developing world, the primary risk to health for people living with HIV is tuberculosis (TB).
Although an ancient, treatable, and preventable disease, TB remains one of the greatest threats to global health generally. There are an estimated eight million new cases of TB and two million deaths per year (WHO, 2005b). A significant number of these can be attributed to primary HIV infection. HIV diminishes the effectiveness of cell-mediated immunity, and by altering the pathogenesis of TB, causes a coinfected person to become sicker with TB much more rapidly than a person who is HIV-negative. Around 10 million people are coinfected with HIV and TB; 90% of these are in developing countries.
Antiretroviral Medications: Is Access the Answer?
Nelson Mandela, speaking during a press conference at the International AIDS Conference in Bangkok, said, “TB is often a death sentence for people with AIDS. It does not have to be this way” (World Health Organization, 2004). And of course, the lethal effects of TB as well as other opportunistic infections associated with HIV can be ameliorated by access to ARVs.
However, universal access is still many years away. The World Health Organization's “3 by 5” campaign report (WHO, 2005a) suggests some improvement in the number of people receiving ARVs (currently at around one million). This is clearly short of the three million people who were the target of the campaign, and far short of the six million people estimated to currently require ARVs. For the reasons suggested by Garrett (2005)), plus factors such as stigma, underdeveloped community involvement, and the need to integrate with current programs (Furber, Hodgson, Desclaux, & Mukasa, 2004), scaling up will never be straightforward. Some projects have achieved success distributing ARVs in resource-poor settings, as described by Farmer et al (2001), but the challenges remain.
The window of time between becoming infected with HIV and the need to receive ARVs because of a serious decline in a person's immune system is likely to be many years in some places. In the meantime, people will be exposed to a range of other infections, primarily TB. With the current dash for ARVs, is this window receiving attention or is a hidden crisis developing in which relatively mundane interventions are being overshadowed? In the case of TB for example, is sufficient access to effective treatments and care being maintained? This would certainly go some way toward improving the quality of life for people living with HIV/AIDS. It is this refocus on ensuring a wide range of care and treatment options that is the crux of a campaign launched globally in March 2005: AIDS Care Watch (ACW).
AIDS Care Watch: The Global Stage
ACW is a global civil society campaign that aims to highlight the need for a comprehensive package of care to bridge the gap between HIV infection and access to ARVs. The campaign is not intended to provide treatment but to be an avenue for treatment advocates worldwide to unite and fight for a comprehensive care package for people living with HIV/AIDS.
The campaign is also not anti-ARV. It holds in contempt those who eschew ARVs in favor of, for example, nutritional supplements as the main treatment for AIDS, as is being debated currently in South Africa (Boseley, 2005).
ACW asks an essential question that goes to the core of the HIV anomaly: Why should so many people living with HIV die of preventable diseases in the wait for ARVs? What provisions are necessary to keep people alive on the long walk to treatment? ACW and its partners—currently over 300 in number—propose a number of key features in the day-to-day lives of people living with HIV. If these features receive sufficient attention, they can maximize the potential for health in the lag between diagnosis, monitoring, and ARV provision by the following methods:
- Treatment for TB and other opportunistic infections
- Improving health and treatment literacy, ensuring that people living with HIV/AIDS are aware of treatments, alternatives, and disease progression
- Highlighting the need for quality home-based care
- Increasing the reach and effectiveness of voluntary counseling and testing
- Provision of clean water and adequate nutrition
- Maximizing harm reduction for injection drug users
- Ensuring that traditional healing and treatment approaches are available
- Reducing HIV stigma, especially in the health care setting
Clearly, these interventions are not novel, and it is highly likely that at least one is part of other current programs. However, the campaign, with the current drive to provide ARVs, contends that is vital to ensure that a full continuum of care is maintained. The campaign's main goal is to reduce the number of preventable HIV/AIDS-related deaths. The campaign hopes to achieve this by enabling campaign partners to do the following:
- Recognize and support the efforts of frontline workers
- Identify critical opportunities and needs for health systems improvements
- Hold relevant institutions and organizations to account regarding their explicit commitments they have made for the provision of HIV/AIDS care
It is the latter point that makes 2005 such an important year for global HIV strategies. Since publication of Malcolm Gladwell's text (Gladwell, 2000), the term tipping point has become synonymous with rapid change arising from the confluence of a small number of highly influential factors. This year, four elements are present that could suggest that this is a time ripe for tipping one way or the other. These include the following:
- Publication of the Millennium Goals Report (United Nations, 2005), a section of which specifically relates to HIV/AIDS. Although the goals are seen increasingly as unachievable in the timescale suggested, they provide for the first time a series of benchmarks against which progress can be measured.
- The Human Development Report (United Nations Development Programme, 2005).
- The benchmark date of the WHO's “3 by 5” initiative (WHO, 2005a).
- Preparation for the review of the declaration by the United Nations General Assembly Special Session on HIV/AIDS in 2001, which states that countries are required to complete their preliminary report by December 2005
Other events during 2005 that were significant included the United Nations Special Summit in September and the G8 Gleneagles meeting in July. These meetings were not seen as entirely successful in terms of their stated goals, but they did continue to keep poverty, development aid, and HIV/AIDS on the global agenda.
The ACW campaign suggests that now is the time to focus and lobby for sufficient attention to be paid to the living conditions of people living with HIV/AIDS rather than on the provision of ARVs alone.
AIDS Care Watch: The Role of Health Care Workers
How does the ACW campaign affect health care workers? A holistic model of care has been part of nursing practice for many years. However, for people awaiting ARVs, it is perhaps an even more crucial approach because of the generic health problems they face. As well as in direct care situations, nurses through international organizations such as the International Council of Nurses and powerful national organizations such as the American Association of Nurses in AIDS Care, also a campaign partner, can lobby governments, policymakers, and nongovernmental organizations to turn and face the hidden crisis the campaign believes is emerging in ARV-starved regions.
Perhaps most important for individual caregivers is the issue of HIV stigma. A specific feature of the campaign is to call on these groups to tackle HIV stigma and associated discrimination in care delivery. Across the world, the health care setting, instead of being a safe haven for people living with HIV/AIDS, is characterized by reluctance on the part of staff in the health care sector to care unconditionally (Foreman, Lrya, & Breinbauer, 2003). As a result, people are less likely to access health care services that are available, and they are less willing to even be tested for HIV in the first place (Nyblade et al, 2003). This is a situation that will in the long term also militate against effective roll-out of ARVs. Without testing it is impossible to determine who is infected and who requires treatment.
Many millions of people living with HIV, especially those in the southern hemisphere, are exposed to an environment that, because of their suppressed immune system, poses a great threat to their health. Although a worthy exercise, ARV provision will be delayed in some regions, as suggested by Garrett (2005). In the meantime, it is vital that the benefits of additional interventions are highlighted and expedited in affected areas, in tandem with the scale-up of ARV access. Interventions that are readily available and relatively easy to operationalize must be given immediate attention.
ACW is one initiative that, by galvanizing civil society and providing a conduit for action, hopes to make redundant the question of why so many people living with HIV and AIDS die of preventable diseases as they wait for ARVs.
- More information about ACW can be found at www.aidscarewatch.org.
- For more information about becoming a partner to the campaign, contact Abigail Erikson by e-mail at [email protected].
Boseley, S. (2005, May 14). Discredited doctor's ‘cure’ for AIDS ignites life-and-death struggle in South Africa
. The Guardian. Retrieved October 23, 2005, from www.guardian.co.uk/aids/story/0,7369,1483821,00.html
Farmer, P., Leandre, F., Mukherjee, J. S., Claude, M., Nevil, P., & Smith-Fawzi, M. C., et al. (2001). Community-based approaches to HIV treatment in resource-poor settings. The Lancet, 358
Foreman, M., Lrya, P., & Breinbauer, C. (2003). Understanding and responding to HIV/AIDS discrimination in the health sector
. Washington, DC: Pan American Health Organization.
Furber, A., Hodgson, I., Desclaux, A., & Mukasa, D. (2004). Will “3 by 5” deliver better care for people with AIDS in developing countries. British Medical Journal, 329
Garrett, L. (2005). HIV and national security: Where are the links? A Council on Foreign Relations report
. New York: Council on Foreign Relations.
Gladwell, M. (2000). The tipping point
. London: Abacus.
Nyblade, L., Pande, R., Mathur, S., MacQuarrie, K., Kidd, R., & Banteyerga, H., et al. (2003). Disentangling HIV and AIDS stigma in Ethiopia, Tanzania and Zambia
. Washington, DC: International Center for Research on Women.
UNAIDS/WHO. (2004). AIDS epidemic update: December 2004
. Geneva, Switzerland: Author.
United Nations. (2005). The Millennium Development Goals report 2005
. New York: Author.
United Nations Development Programme. (2005). Human development report 2005
. New York: Author.
World Health Organization (2004, July 15). Remarks by Nelson Mandela: “Confronting the joint HIV/TB epidemics.” 15 July 2004, XV International AIDS Conference, Bangkok
. Retrieved December 6, 2005, from http://www.who.int/3by5/news21/en/
World Health Organization. (2005a). Progress on global access to HIV antiretroviral therapy: An update on “3 by 5” June 2005
. Geneva, Switzerland: Author.
World Health Organization. (2005b). Tuberculosis: Infection and transmission
, Fact Sheet No. 104. Retrieved December 6, 2005, from www.who.int/mediacentre/factsheets/fs104/en/