- Open Access
The increasing chronicity of HIV in sub-Saharan Africa: Re-thinking "HIV as a long-wave event" in the era of widespread access to ART
© Nixon et al; licensee BioMed Central Ltd. 2011
- Received: 8 March 2011
- Accepted: 20 October 2011
- Published: 20 October 2011
HIV was first described as a "long-wave event" in 1990, well before the advent of antiretroviral therapy (ART). The pandemic was then seen as involving three curves: an HIV curve, an AIDS curve and a curve representing societal impact. Since the mid-2000's, free public delivery of life-saving ART has begun shifting HIV from a terminal disease to a chronic illness for those who can access and tolerate the medications. This increasing chronicity prompts revisiting HIV as a long-wave event. First, with widespread availability of ART, the HIV curve will be higher and last longer. Moreover, if patterns in sub-Saharan Africa mirror experiences in the North, people on ART will live far longer lives but with new experiences of disability. Disability, broadly defined, can result from HIV, its related conditions, and from side effects of medications. Individual experiences of disability will vary. At a population level, however, we anticipate that experiences of disability will become a common part of living with HIV and, furthermore, may be understood as a variation of the second curve. In the original conceptualization, the second curve represented the transition to AIDS; in the era of treatment, we can expect a transition from HIV infection to HIV-related disability for people on ART. Many such individuals may eventually develop AIDS as well, but after a potentially long life that includes fluctuating episodes of illness, wellness and disability. This shift toward chronicity has implications for health and social service delivery, and requires a parallel shift in thinking regarding HIV-related disability. A model providing guidance on such a broader understanding of disability is the World Health Organization's International Classification of Functioning, Disability and Health (ICF). In contrast to a biomedical approach concerned primarily with diagnoses, the ICF includes attention to the impact of these diagnoses on people's lives and livelihoods. The ICF also focuses on personal and environmental contextual factors. Locating disability as a new form of the second curve in the long-wave event calls attention to the new spectrum of needs that will face many people living with HIV in the years and decades ahead.
- Participation Restriction
- Biomedical Approach
- National Strategic Plan
- Widespread Access
- Standard Public Health
What sets HIV and AIDS apart from other epidemics is that there are additional curves to consider. The three curves in Figure 1 were conceived before the widespread availability of antiretroviral therapy (ART) [1, 2]. First is the HIV curve, which was envisaged to precede a second curve, the AIDS curve, by 8 to 12 years. For the HIV curve, in the absence of a cure the only way to leave the pool of people with infections is by dying. The second curve, AIDS, reflected people who were becoming ill and, often, dying. The third curve represented impacts, which included orphaning, food insecurity and other societal concerns.
The innovation in this multi-curve approach was disaggregating the idea of a long-wave event into some of its constituent processes. This orientation drew attention to the need for long-term engagement in responding to the HIV epidemic. It also indicated an intergenerational problem because: (a) one outcome of the disease was increased orphaning as parents had children and then died prematurely, leaving those children to possible insufficient socialization, thus breaking the bond between generations; (b) inadequately socialized children were more likely to adopt risky sexual behaviours, thus replenishing the disease susceptible population age cohort . Finally, this conceptualization of HIV as a long-wave event cautioned that most standard public health interventions for communicable diseases would be problematic given the ill-fit with funding streams and sheer magnitude of the problem.
Free public access to life-saving ART became available in parts of Africa in the mid-2000's, in contrast to many resource-rich countries where ART had been available from 1996. Despite this delayed start, by the end of 2009, 37% of people eligible for ART in sub-Saharan Africa were receiving treatment, compared with only 2% in 2002. As a result, AIDS-related deaths in Southern Africa dropped by almost one-fifth between 2004 and 2009 . The advent of widespread access to ART in Southern Africa marks the dawning of a new era in the history of HIV as vast numbers of people living with HIV may expect to live far longer . Indeed, the clinical, immunologic and virologic effects of ART for people living with HIV in resource-poor countries are well-documented [6–8]. Most people who can access and adhere to treatment can expect improvements in CD4 count and viral load, fewer opportunistic infections and overall reductions in HIV-related morbidity and mortality. HIV in high-prevalence, resource-poor countries is on the path toward becoming a chronic illness [9, 10].
This increasing chronicity prompts revisiting HIV as a long-wave event. First, the advent of widespread ART means that the HIV curve will be higher and will last longer since people continue to become HIV-infected but are also living longer on treatment . As a result, progression to AIDS on an individual level is far less predictable, although estimates can be made of treatment failure at a population level. The advent of better drugs at lower prices, especially second-line regimens, could further change the shape of the curve.
If patterns in sub-Saharan Africa mirror experiences in high-income countries, people on ART will live far longer lives but with new experiences of disability [12–18]. Disability, broadly defined, can result from HIV, its related conditions, and from side effects of the medications . This shifting experience has stimulated innovative responses from rehabilitation, health and social sectors in many resource-rich countries [20–25]. However, it is likely that HIV-related disabilities in resource-poor settings will be more acutely disabling given the limited availability of rehabilitation, chronic health care services and social support grants.
Individual experiences of disability will vary greatly. At a population level, we anticipate that disability will become a common part of living with HIV, and may now be understood as a new version of the second curve. Whereas the second curve in the original conceptualization represented the transition to AIDS, in the era of treatment we can expect a transition from HIV infection to HIV-related disability for people who can access and tolerate ART. Many of these individuals may eventually transition to AIDS as well, but after a potentially long life that includes fluctuating experiences of illness, wellness and disability over time. This shift occurs in a milieu where increased resources are unlikely to be available in significantly greater quantities than they are now to support these elevated demands in terms of health infrastructure, rehabilitation and disability services, palliative care provision and/or medications to mitigate the effects of chronically disabling conditions.
The advent of ART in resource-poor settings has marked a dramatic shift in the epidemic giving rise to the potential onset of vastly elevated levels of HIV-related disability. Indeed, clinicians working in HIV may be familiar with patients whose clinical markers (e.g., CD4 count and viral load) indicate that they are doing well, yet they are struggling to manage. The reverse can also be true. This disconnect points to the importance of considering not only biomedical concerns (e.g., diagnoses, clinical markers, symptoms, drugs) but also the life-related impacts of HIV and its related conditions, which we term HIV-related disability. This shift also occurred in resource-rich countries in the 1990's upon the advent of treatment in those settings. However, the experience in Africa will be distinct in at least two important ways. First, the scope of the problem in terms of both absolute numbers and prevalence in many African countries dwarfs the experiences of many resource-rich countries. Second, the service delivery models for addressing disability-related concerns are stretched, fragile or non-existent in many African settings.
This analysis is reminiscent of the policy challenges flagged by Barnett and Blaikie in 1990 regarding the magnitude of the problem and the insufficient preparedness of the health system for responding to impending needs. Locating disability as a new form of the second curve in the long-wave event illuminates this concern today and in the future. It opens up new thinking about longer-term responses to these challenges in the era of ART. For example, reconceptualizing HIV using a disability lens highlights the need for engagement and education of many social sectors, some of whom may not as yet be engaged in the HIV response. This will include people involved in rehabilitation and/or disability efforts at the community, clinical practice, and policy levels . The recently released World Report on Disability advocates for the adoption of the ICF as a universal framework for disability data collection across health conditions, offering a useful starting point as the HIV field shifts to consider HIV-related disability . In terms of health systems, attending to the increasingly chronic nature of HIV offers links to existing efforts to recognize and address the increasing burden of chronic diseases . Finally, national strategic plans to address HIV also need to take into account HIV-related disability and the diverse policy and programme responses required to address these coming changes in the experience of the disease . Disability will affect many people living with HIV in the years and decades ahead, and concomitant responses from health, social and other sectors will be central to promoting health, quality of life and productivity.
Acknowledgements and Funding
The input from AW and JHH was supported, in part, by the DFID-funded ABBA Research Partners Consortium; the views expressed are not necessarily those of DFID.
- Barnett AS, Blaikie P: AIDS in Africa: Its Present and Future Impact. 1990, London: John Wiley and CoGoogle Scholar
- Barnett AS, Whiteside A: AIDS in the Twenty-First Century: Disease and Globalization. 2002, Hampshire, UK: Palgrave MacMillanView ArticleGoogle Scholar
- Barnett AS: A long-wave event. HIV/AIDS, politics, governance and 'security': sundering the intergenerational bond?. International Affairs. 2006, 82 (2): 297-313. 10.1111/j.1468-2346.2006.00532.x.View ArticleGoogle Scholar
- Global Report: UNAIDS Report on the Global AIDS Epidemic 2010. [http://www.unaids.org/documents/20101123_GlobalReport_Foreword_em.pdf]
- Mahy M, Stover J, Stanecki K, Stoneburner R, Tassie JM: Estimating the impact of antiretroviral therapy: regional and global estimates of life-years gained among adults. Sex Transm Infect. 2010, 86 (Suppl 2): ii67-71. 10.1136/sti.2010.046060.PubMedPubMed CentralGoogle Scholar
- Sow PS, Otieno LF, Bissagnene E, Kityo C, Bennink R, Clevenbergh P, Wit FW, Waalberg E, Rinke de Wit TF, Lange JM: Implementation of an antiretroviral access program for HIV-1-infected individuals in resource-limited settings: clinical results from 4 African countries. J Acquir Immune Defic Syndr. 2007, 44 (3): 262-267. 10.1097/QAI.0b013e31802bf109.View ArticlePubMedGoogle Scholar
- Fairall LR, Bachmann MO, Louwagie GM, van Vuuren C, Chikobvu P, Steyn D, Staniland GH, Timmerman V, Msimanga M, Seebregts CJ, Boulle A, Nhiwatiwa R, Bateman ED, Zwarenstein MF, Chapman RD: Effectiveness of antiretroviral treatment in a South African program: a cohort study. Arch Intern Med. 2008, 168 (1): 86-93. 10.1001/archinternmed.2007.10.View ArticlePubMedGoogle Scholar
- Akileswaran C, Lurie MN, Flanigan TP, Mayer KH: Lessons learned from use of highly active antiretroviral therapy in Africa. Clin Infect Dis. 2005, 41 (3): 376-385. 10.1086/431482.View ArticlePubMedGoogle Scholar
- Russell S, Seeley J: The transition to living with HIV as a chronic condition in rural Uganda: working to create order and control when on antiretroviral therapy. Soc Sci Med. 2010, 70 (3): 375-382. 10.1016/j.socscimed.2009.10.039.View ArticlePubMedGoogle Scholar
- Russell S, Seeley J, Ezati E, Wamai N, Were W, Bunnell R: Coming back from the dead: living with HIV as a chronic condition in rural Africa. Health Policy Plan. 2007, 22 (5): 344-347. 10.1093/heapol/czm023.View ArticlePubMedGoogle Scholar
- United Nations General Assembly: Political Declaration on HIV/AIDS: Intensifying our Efforts to Eliminate HIV/AIDS. United Nations 2011, A/65/L77 Article 33Google Scholar
- Rusch M, Nixon S, Schilder A, Braitstein P, Chan K, Hogg RS: Prevalence of activity limitation among persons living with HIV/AIDS in British Columbia. Can J Public Health. 2004, 95 (6): 437-440.PubMedGoogle Scholar
- Rusch M, Nixon SA, Schilder A, Braitstein P, Chan K, Hogg RS: Impairments, activity limitations and participation restrictions: Prevalence and associations among persons living with HIV/AIDS in British Columbia. Health and Quality of Life Outcomes. 2004, 2: 46-10.1186/1477-7525-2-46.View ArticlePubMedPubMed CentralGoogle Scholar
- O'Brien KK, Davis AM, Strike C, Young NL, Bayoumi AM: Putting episodic disability into context: a qualitative study exploring factors that influence disability experienced by adults living with HIV/AIDS. J Int AIDS Soc. 2009, 12 (1): 5-10.1186/1758-2652-12-5.View ArticlePubMedGoogle Scholar
- O'Brien KK, Bayoumi AM, Strike C, Young NL, Davis AM: Exploring disability from the perspective of adults living with HIV/AIDS: development of a conceptual framework. Health Qual Life Outcomes. 2008, 6: 76-10.1186/1477-7525-6-76.View ArticlePubMedPubMed CentralGoogle Scholar
- Anandan N, Braveman B, Kielhofner G, Forsyth K: Impairments and perceived competence in persons living with HIV/AIDS. Work. 2006, 27 (3): 255-266.PubMedGoogle Scholar
- Heaton RK, Franklin DR, Ellis RJ, McCutchan JA, Letendre SL, Leblanc S, Corkran SH, Duarte NA, Clifford DB, Woods SP, Collier AC, Marra CM, Morgello S, Mindt MR, Taylor MJ, Marcotte TD, Atkinson JH, Wolfson T, Gelman BB, McArthur JC, Simpson DM, Abramson I, Gamst A, Fennema-Notestine C, Jernigan TL, Wong J, Grant I, CHARTER Group, HNRC Group: HIV-associated neurocognitive disorders before and during the era of combination antiretroviral therapy: differences in rates, nature, and predictors. Journal of Neurovirology. 2011, 17 (1): 3-16. 10.1007/s13365-010-0006-1.View ArticlePubMedPubMed CentralGoogle Scholar
- Wit SD, Sabin CA, Weber R, Westring Worm S, Reiss P, Cazanave C, El-Sadr W, D'Arminio Monforte A, Fontas E, Law MG, Friis-Moller N, Phillips A: Incidence and risk factors for new-onset diabetes in HIV-infected patients. Diabetes Care. 2008, 31 (6): 1224-1229. 10.2337/dc07-2013.View ArticlePubMedPubMed CentralGoogle Scholar
- UNAIDS: Disability and HIV Policy Brief. 2009, Accessed online 15 January 2011 at: [http://data.unaids.org/pub/Manual/2009/jc1632_policy_brief_disability_en.pdf]Google Scholar
- Worthington C, O'Brien K, Myers T, Nixon S, Cockerill R: Expanding the lens of HIV services provision in Canada: results of a national survey of HIV health professionals. AIDS Care. 2009, 21 (11): 1371-1380. 10.1080/09540120902883101.View ArticlePubMedGoogle Scholar
- Wellesley Health Centre: A Comprehensive Guide for People Living with HIV Disease, Module 7: Rehabilitation Services. 1998, Toronto: Health CanadaGoogle Scholar
- Canadian Working Group on HIV and Rehabilitation: E-Module for Evidence-Informed HIV Rehabilitation. 2011, [http://www.hivandrehab.ca/EN/information/care_providers/documents/CWGHR_E-moduleEvidence-InformedHIVRehabilitationfinal.pdf]Google Scholar
- Worthington C, Myers T, O'Brien K, Nixon S, Cockerill R: Rehabilitation in HIV/AIDS: development of an expanded conceptual framework. AIDS Patient Care STDS. 2005, 19 (4): 258-271. 10.1089/apc.2005.19.258.View ArticlePubMedGoogle Scholar
- Hanass-Hancock J, Nixon SA: The fields of HIV and disability: past, present and future. J Int AIDS Soc. 2009, 12: 28-10.1186/1758-2652-12-28.View ArticlePubMed CentralGoogle Scholar
- Escovitz K, Donegan K: Providing effective employment supports for persons living with HIV: the KEEP project. Journal of Vocational Rehabilitation. 2005, 22 (2): 105-114.Google Scholar
- World Health Organization: ICF: International Classification of Functioning, Disability and Health. 2001, Geneva: WHOGoogle Scholar
- World Health Origination, World Bank: World Report on Disability. 2011, Geneva: World Health OrganizationGoogle Scholar
- Rosenbaum P, Stewart D: The World Health Organization International Classification of Functioning, Disability, and Health: a model to guide clinical thinking, practice and research in the field of cerebral palsy. Semin Pediatr Neurol. 2004, 11 (1): 5-10. 10.1016/j.spen.2004.01.002.View ArticlePubMedGoogle Scholar
- Eide AH, Jelsma J, Loeb M, Maart S, Toni MK: Exploring ICF components in a survey among Xhosa speakers in Eastern & Western Cape, South Africa. Disabil Rehabil. 2008, 30 (11): 819-829. 10.1080/09638280701390998.View ArticlePubMedGoogle Scholar
- Kaeloboga JJ: HIV-Associated neurocognitive disorders in Botswana: A pilot study. 9th AIDS Impact Conference. 2009, Gaborone, BotswanaGoogle Scholar
- World Health Organization: HIV/AIDS and Mental Health. 2008, Geneva, WHOGoogle Scholar
- Smart T: HIV/AIDS and mental health: A clinical review. HIV and AIDS Treatment in Practice. 2009, 145: 1-22.Google Scholar
- Nixon S, Cott C: Shifting perspectives: reconceptualizing HIV disease in a rehabilitation framework. Physiotherapy Canada. 2000, 52: 189-197.Google Scholar
- Canadian Working Group on HIV and Rehabilitation: About Us. 2011, [http://www.hivandrehab.ca/EN/about_us/index.php]Google Scholar
- Myezwa H, Stewart A, Musenge E, Nesara P: Assessment of HIV-positive in-patients using the International Classification of Functioning, Disability and Health (ICF), at Chris Hani Baragwanath Hospital, Johannesburg. African Journal of AIDS Research. 2009, 8 (1): 93-106. 10.2989/AJAR.2009.8.1.10.723.View ArticlePubMedGoogle Scholar
- Van As M, Myezwa H, Stewart A, Maleka D, Musenge E: The International Classification of Function Disability and Health (ICF) in adults visiting the HIV outpatient clinic at a regional hospital in Johannesburg, South Africa. AIDS Care. 2009, 21 (1): 50-58. 10.1080/09540120802068829.View ArticlePubMedGoogle Scholar
- Myezwa H, Buchalla CM, Jelsma J, Stewart A: HIV/AIDS: use of the ICF in Brazil and South Africa - comparative data from four cross-sectional studies. Physiotherapy. 2011, 97: 17-25. 10.1016/j.physio.2010.08.015.View ArticlePubMedGoogle Scholar
- Gaidhane AM, Zahiruddin QS, Waghmare L, Zodpey S, Goyal RC, Johrapurkar SR: Assessing self-care component of activities and participation domain of the international classification of functioning, disability and health (ICF) among people living with HIV/AIDS. AIDS Care. 2008, 20 (9): 1098-104. 10.1080/09540120701808820.View ArticlePubMedGoogle Scholar
- Nixon SA, Forman L, Hanass-Hancock J, Mac-Seing M, Munyanukato N, Myezwa H, Retis C: Rehabilitation: A Crucial Component in the Future of HIV Care and Support. Southern African Journal of HIV Medicine. 2011, 12 (2): 12-17.Google Scholar
- Allotey P, Reidpath DD, Yasin S, Chan CK, de-Graft Aikins A: Rethinking health-care systems: a focus on chronicity. The Lancet. 2011, 377 (9764): 450-451. 10.1016/S0140-6736(10)61856-9.View ArticleGoogle Scholar
- Hanass-Hancock J, Strode A, Grant C: Inclusion of disability within national strategic responses to HIV and AIDS in Eastern and Southern Africa. Disability and Rehabilitation. 2011,Google Scholar
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