Access to good quality antiretroviral treatment has

transformed the prognosis for people with AIDS in the

developed world. Although it is feasible and desirable

to deliver antiretroviral drugs in resource poor

settings,few of the 95% of people with HIV and

AIDS who live in developing countries receive them.

The World Health Organization has launched a

programme to deliver antiretroviral drugs to three million

people with AIDS in the developing world by

2005, the “3 by 5” initiative. We identify some of the

challenges faced by the initiative, focusing on delivery

of care

Desclaux, A.

Furber, A.S.

Hodgson, I.J.

Mukasa, D.S.

English

PubMed

White Rose Research Online

This is a repository copy of Barriers to better care for people with AIDS in developing countries .White Rose Research Online URL for this paper:http://eprints.whiterose.ac.uk/518/Article:Furber, A.S., Hodgson, I.J., Desclaux, A. et al. (1 more author) (2004) Barriers to better care for people with AIDS in developing countries. BMJ, 329 (7477). pp. 1281-1283. ISSN 0959-8138 https://doi.org/10.1136/bmj.329.7477.1281eprints@whiterose.ac.ukhttps://eprints.whiterose.ac.uk/Reuse Unless indicated otherwise, fulltext items are protected by copyright with all rights reserved. The copyright exception in section 29 of the Copyright, Designs and Patents Act 1988 allows the making of a single copy solely for the purpose of non-commercial research or private study within the limits of fair dealing. The publisher or other rights-holder may allow further reproduction and re-use of this version - refer to the White Rose Research Online record for this item. Where records identify the publisher as the copyright holder, users can verify any specific terms of use on the publisher’s website. Takedown If you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing eprints@whiterose.ac.uk including the URL of the record and the reason for the withdrawal request. Education and debateBarriers to better care for people with AIDS in developingcountriesAndrew S Furber, Ian J Hodgson, Alice Desclaux, David S MukasaWHO’s “3 by 5” initiative to increase access to antiretroviral drugs to people with AIDS indeveloping countries is highly ambitious. Some of the biggest obstacles relate to delivering careAccess to good quality antiretroviral treatment hastransformed the prognosis for people with AIDS in thedeveloped world. Although it is feasible and desirableto deliver antiretroviral drugs in resource poorsettings,1 w1 w2 few of the 95% of people with HIV andAIDS who live in developing countries receive them.The World Health Organization has launched aprogramme to deliver antiretroviral drugs to three mil-lion people with AIDS in the developing world by2005, the “3 by 5” initiative.2 w3 We identify some of thechallenges faced by the initiative, focusing on deliveryof care.Continuum of careIdeally, care for people with AIDS should start with vol-untary counselling and HIV testing. However, only 10%of people who need testing in low and middle incomecountries have access to services, and therefore most areunaware of their serological status.w5 Care shouldinclude psychological, social, and economic support aswell as broad based medical care incorporatingnutritional advice, prevention and treatment of oppor-tunistic infections, and palliative care.3 w6 In manycountries, this continuum remains to be set up.The 3 by 5 initiative considers access to antiretrovi-ral drugs as an opportunity to improve care andenhance prevention efforts.4 However, the focus onantiretroviral drugs risks distracting resources andattention from a broader model of health care. Arecent survey of palliative care for people with AIDS indeveloping countries showed that services were ofteninadequate.5 Pain management was especially poor.India’s decision to rapidly provide free antiretroviraldrugs to 100 000 people with AIDS in the six stateswith the highest HIV prevalence created considerabledebate, partly for this reason.6 7Countries need to take the opportunities presentedby the WHO initiative to improve their public healthinfrastructure. Care for patients who do not requireantiretroviral drugs is based on regular clinical followup. But this kind of care, related to a chronic diseasemodel, is far from the acute disease model presentlydominant in the healthcare services of developingcountries.8 Setting up this new model requiresequipment, human resources, data management, andthe use of communication tools that are both efficientand protect confidentiality.Stigma and discriminationThe issue of confidentiality is crucially important inview of widespread AIDS related stigma and discrimi-nation. According to UNAIDS, AIDS related stigma is“the process of devaluation of people living with orassociated with HIV/AIDS.”w7 Despite more than 20years of awareness of AIDS, the stigmatisation of peo-ple living with HIV remains strong, albeit manifestedin more sophisticated ways.9References w1-w20 are on bmj.comFRIEDRICHSTARK/STILLPICTURESPublic Health GISUnit, School forHealth and RelatedResearch, Universityof Sheffield,Sheffield S1 4DAAndrew S Furberclinical lecturer inpublic healthSchool of HealthStudies, Universityof Bradford,BradfordIan J HodgsonlecturerCentre deRecherche Cultures,Santé, Sociétés,Universitéd’Aix-Marseille,MaisonMéditerranéennedes Sciences del’Homme, 13094Aix en ProvenceCedex 2, FranceAlice Desclauxprofessor of medicalanthropologyUganda Red CrossSociety, PO Box 494,Kampala, UgandaDavid S MukasaHIV and AIDStrainer and counsellorCorrespondence to:A S FurberA.Furber@sheffield.ac.ukBMJ 2004;329:1281–31281BMJ VOLUME 329 27 NOVEMBER 2004 bmj.com on 23 June 2005 bmj.comDownloaded from WHO asserts that access to antiretroviral drugs willrapidly reduce stigma,2 and this is true at a global leveland, to an extent, at individual level. The disappearanceof “body marks” such as slimness or Kaposi’s sarcomais felt as a real relief.w8 Once HIV is perceived as achronic but treatable condition, one of the factors thatamplify stigma—fear of contagion and inevitabledeath—is lessened. However, stigma is much more thanfear of contagion. It is also a tool used by cultures toexclude those felt to have broken extant rules. Thedominant stereotype of people living with HIV is astigmatising one that casts them as immoral,10 leadingto what Goffman suggests is a spoilt identity.11 In ourview, the downgrading of HIV to a manageable diseaseis unlikely to change this perception of HIV aseffectively as WHO suggests.Antiretroviral drugs may also be stigmatising.Patients taking antiretroviral drugs in Senegal oftenhide their medicines. Although most of their familiesare supportive, some relatives still reject them.Neighbourhood or professional relationships still con-vey a danger of rejection, especially in contexts of con-flict or competition.w9Recent research suggests that use of testing servicesand disclosure of status is constrained because of“anticipated and actual stigma experienced by peopleliving with HIV.”w10 In tandem with the development ofAIDS care and support for health workers, the 3 by 5initiative should promote training programmes forhealthcare workers on medical ethics and humanrights. Since antenatal clinics, sexual health services,and tuberculosis treatment centres have been sug-gested as entry points for AIDS care, it is importantthat the stigmatising effect of AIDS does not deterusers of these services.12Systems of deliveryAlthough the 3 by 5 initiative has already broughtsome important technical advances, such as the devel-opment of simplified treatment regimens and moni-toring protocols,13 some issues related to the delivery ofantiretroviral drugs remain. Some experts have arguedthat the best way to deliver highly active antiretroviraldrugs treatment (HAART) is likely to be throughdirectly observed therapy (DOT), so called DOT-HAART,w11 in order to support adherence.Lessons need to be learnt from the use of DOTs intuberculosis.14 Although most developing countries haveadopted DOTs for tuberculosis, and some have seenapparent successes,15 not all randomised controlled trialsshow that DOTs confer benefit.w12 w13 Experience inAfrica has been highly variable.16 Treatment completionrates vary from 37% (low) in the Central African Repub-lic to 78% (moderate) in Kenya and Tanzania. Clearlymultiple approaches to delivering antiretroviral drugswill be required to close such gaps.Senegal, Malawi, and South Africa have achievedhigh and sustainable adherence rates for antiretroviraldrugs without directly observed treatment.17 w4 Theimportant factors seem to be the regular supply ofmedicines, efficient health service management, andsupport through “antiretroviral drugs literacy promo-tion” and self support groups.As the quality of life for patients on antiretroviraldrugs improves, frequent contact with healthcare pro-viders may be difficult. In Dakar, missing monthlyappointments to obtain antiretroviral drugs was thefirst reason for non-compliance among patients intheir second year of treatment.w14 Most patients hadreturned to their jobs, often requiring stays far fromhome, especially for sailors and retailers. A visit to thehospital to obtain antiretroviral drugs often takesseveral hours, which is inconvenient for all patients.Community involvementDelivering antiretroviral drugs to three million peoplein developing countries by 2005 will require hugeincreases in trained staff; an estimated 100 000 trainedhealth providers and treatment supporters will berequired by the end of 2005.w15 The initiative plans toinvolve community based organisations and includepeople with AIDS at all levels. Administering such aworkforce risks diverting scarce healthcare managersfrom already overloaded essential programmes.Community based organisations are very heteroge-neous. In countries such as Burundi they have set upwhole AIDS care programmes, whereas in other coun-tries their role is more limited, perhaps relating only tocommunication of prevention messages. Healthcareworkers may find it difficult to accept such organisa-tions as partners, especially if they have promoted tra-ditional medicines for AIDS or faith healing.w16 w17 Anevaluation in Burkina Faso has shown that althoughcommunity based organisations are thought to bemore accessible, more supportive, and more able toguarantee follow up than healthcare services, they havepoor results because of losing patients.w18 Internalpower distribution within the organisations may meanthat people in greatest need of treatment are not theones who get first access to antiretroviral drugs, andthis can result in disaffection among potential users.Training may be insufficient to change the social strat-egies and issues of established community organisa-tions, healers, or groups. Defining criteria to selectpossible partners will be a hard task.Access to treatmentConcern has been voiced that existing criteria for accessare inequitable.18 Presently most programmes providingtreatment do so at different tariffs based on differentways of considering equity. A patient who gets free treat-ment in one programme might be asked for a paymentin excess of average monthly wages in a neighbouringprogramme. Providing free or subsidised treatment on afirst come, first served basis tends to favour richer, urban,and more educated people. Perversely, these are thepeople in whom treatment might be least effective asmany of them will have previously purchased antiretro-viral drugs through private facilities. Leaving decisionsabout charges to front line staff leads to inconsistenciesand may lead to corruption.Criteria for access to subsidised antiretroviral drugsin national programmes differ substantially betweencountries. In West Africa, these criteria are based onsocial characteristics, level of income, profession, socialstatus, and number of dependants.w19 Perceptions ofequity differ at local levels, often related to a commu-nity’s social dynamics. Such variation is difficult tomanage from both a public health and a clinicalEducation and debate1282 BMJ VOLUME 329 27 NOVEMBER 2004 bmj.com on 23 June 2005 bmj.comDownloaded from perspective and doesn’t fulfil requirements for equity atnational or international levels.Introducing user charges is likely to be inequitable aswell as adversely affecting adherence.18 19 Many familieswill already be living in poverty as a result of a reductionin income or paying for AIDS care. Providing free accessto antiretroviral drugs based on rights and not ability topay,19 as occurs in the Senegal national programme, willbe most equitable, will resolve dilemmas over thetreatment of migrants, and will also reduce migration toobtain antiretroviral drugs.ConclusionsThe 3 by 5 initiative faces important challenges inmeeting the desperate need for antiretroviral drugs inmany developing countries,. Constructive dialoguebetween stakeholders with different agendas, includinghealthcare workers, public health managers, commu-nity and faith based organisations, and people withAIDS, will be crucial if the initiative is to succeed. Theprevailing social strategies must be consideredcarefully when setting up programmes and workingrelationships, in order to capitalise on and notundermine the existing social order. In an interview inBangkok, the executive director of UNAIDS noted that“antiretroviral therapy is still a rare commodity, and itwill be for some time. The result of that is always higherprice, and also higher price in terms of power. Who hasaccess to it, and who comes first: it’s a terrible issue.”w20Without addressing this and the other issues we haveraised, the 3 by 5 initiative may fall short of its goals.ASF, IJH, and DSM have received support from Health andDevelopment Networks (www.hdnet.org) to report on interna-tional AIDS events which have helped inform this article. Theviews expressed do not necessarily represent the views oforganisations for which the authors work. We thank the externalreviewers for their helpful comments.Contributors and sources: This article was written after discussionbetween the authors at recent international AIDS conferences inthe light of keynote presentations by WHO/UNAIDS. Theauthors have experience of working in AIDS programmes in Asiaand Africa both in government and non-government sectors. ASFwrote the first draft and is the guarantor. IJH, AD, and DSM allrevised and added to parts of the paper.Competing interests: None declared.1 Mukherjee JS, Farmer PE, Niyizonkiza D, McCorkle L, Vanderwarker C,Teixeira P, et al. Tackling HIV in resource poor countries. BMJ2003;327:1104-6.2 Word Health Organization. Treating 3 million by 2005: making it happen.Geneva: WHO, 2003. www.who.int/3by5/en/ (accessed 15 Dec 03).3 Osborne CM, van Praag E, Jackson H. Models of care for patients withHIV/AIDS. AIDS 1997;11B:135-41.4 Gayle H, Lange JM. Seizing the opportunity to capitalise on growingaccess to HIV treatment to expand HIV prevention. Lancet 2004;364:6-8.5 Harding R, Stewart K, Marconi K, O’Neill JF, Higginson IJ. Current HIV/AIDS end-of-life care in sub-Saharan Africa: a survey of models, services,challenges and priorities. BMC Public Health 2003;3:33.6 Kumar S. India’s treatment programme for AIDS is premature. BMJ2004;328:70.7 Sharma DC. India unprepared for antiretroviral treatment plan. Lancet2003;362:1988.8 Kitahata MM, Tegger MK, Wagner EH, Holmes KK. Comprehensivehealth care for people infected with HIV in developing countries. BMJ2002;325:954-7.9 Parker R, Aggleton P. HIV and AIDS related stigma and discrimination: aconceptual framework and implications for action. Soc Sci Med2003;57:13-24.10 Stanley LD. Transforming AIDS: the moral management of stigmatizedidentity. Anthropol Med 1999;6:103-20.11 Goffman E. Stigma: notes on the management of spoiled identity. EnglewoodCliffs, NJ: Prentice-Hall, 1963.12 Holmes W. 3 by 5, but at what cost? Lancet 2004;363:1072-3.13 World Health Organization. Scaling up antiretroviral therapy inresource-limited setting: treatment guidelines for a public health approach.Geneva: WHO, 2003.14 Gupta R, Irwin A, Raviglione MC, Kim JY. Scaling-up treatment for HIV/AIDS: lessons learned from multidrug-resistant tuberculosis. Lancet2004;363:320-4.15 China Tuberculosis Control Collaboration. The effect of tuberculosiscontrol in China. Lancet 2004;364:417-22.16 Stevens W, Kaye S, Corrah T. Antiretroviral therapy in Africa. BMJ2004;328:280-2.17 Lanièce I, Ciss M, Desclaux A, Diop K, Mbodj F, Ndiaye B, et al.Adherence to HAART and its principal determinants in a cohort of Sen-egalese adults. AIDS 2003;7(suppl 3): S103-8.18 Loewenson R, McCoy D. Access to antiretroviral treatment in Africa. BMJ2004;328:241-2.19 Mukherjee J. Basing treatment on rights rather than ability to pay: 3 by 5.Lancet 2004;363:1071-2.(Accepted 20 September 2004)Natural killer cells, miscarriage, and infertilityAshley Moffett, Lesley Regan, Peter BraudeEnthusiasm for new treatments aimed at natural killer cells in women with reproductive failure isunfortunately not backed up by the scienceNatural killer (NK) cells have an important role in theearly responses to viral infections and have also beenlinked with failure of pregnancy. Recent reports in themedia and the internet have exposed women to a baf-fling array of conflicting information about tests forNK cells and “cures” for infertility and miscarriage.These are based on the premise that malfunction ofNK cells causes these conditions. Increasingly, clinicsare offering blood tests to measure the number andactivity of circulating NK cells. As a result of theseinvestigations, many women are offered treatmentssuch as steroids, intravenous immunoglobulins, andtumour necrosis factor  blocking agents. The scientificrationale for these tests and treatments, however, is notsupported by our current knowledge of the function ofuterine NK cells.Summary pointsThe 3 by 5 initiative aims to deliver antiretroviral drugs to threemillion people with HIV infection in developing countries by 2005To succeed, the initiative must develop a chronic disease model ofcare through a strengthened public health infrastructureCooperation is needed with existing essential programmes tomanage scarce health staffThe influence of stigma requires monitoringAccess to treatment must be based on rights and not ability to payEducation and debateDepartment ofPathology,University ofCambridge,CambridgeCB2 1QPAshley MoffettKing’s Collegemedical fellowcontinued overBMJ 2004;329:1283–51283BMJ VOLUME 329 27 NOVEMBER 2004 bmj.com on 23 June 2005 bmj.comDownloaded from 

Barriers to better care for people with AIDS in developing countries

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Barriers to better care for people with AIDS in developing countries

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