Treatment Education Is Critical
O
Economic and Political WeeklyApril 7, 20071250a cure – a perilous misconception. Allud-ing to the impact of cost issues on families’financial burden, one of the programmeofficers from Catholic Relief Services, aninternational NGO in India, explainedhowfamilies in semi-urban pockets ofMaharashtra were running into hugedebtsbecause of one of their familymembersbeing on ART. Furthermore, ithas been noted that while close relativesformed the strongest sources of supportforPLHAs, the medical staff at govern-ment hospitals was termed either un-helpfulor rude.From the scientific and empirical evi-dence presented above, it becomes im-perative upon treatment providers andpolicymakers to construct a sound psycho-social and cultural environment by shap-ing people’s knowledge and beliefs aroundART through strategic educational effortsthat will simultaneously complement ex-isting efforts to scale up access. Consid-ering that the prevalent attitudinal andcontextual environment surrounding ARTneeds urgent attention, it is not only PLHAswho must be educated. It is equally criticalfor physicians and staff at governmentfacilities that act as a point of contactbetween the PLHA and the health systemto be educated on all aspects of adminis-tering treatment; similarly, close relativesand friends of PLHAs must be educatedon providing a supportive environment athome that facilitates open communicationand offers solid nutrition; policymakers,journalists, and civic society on inter-sectoral challenges in rolling out ARV,and the general public who must besensitised not only with basic knowledgeof ART but also to the presence of PLHAssince the latter are part of the very samesocial fabric.Unfortunately, GoI’s response so far inthis context of treatment education hasbeen far from desired. A brief discussionand review of the government’s actionswith regard to ARV treatment will serveus at this point.ARV Policy in IndiaAfter years of resistance to the ideaof providing ART to PLHAs, the GoIfinally rolled out its Phase I plan in 2004focusing on women and children in sixhigh-prevalence states: Andhra Pradesh,Karnataka, Maharashtra, Tamil Nadu,Manipur and Nagaland.11 The initial 2005target of providing access to 1,00,000PLHAsproved too challenging and hencethis target was pushed to 2007 withassurances of annual increments of 15-20per cent.12 As of today, UNAIDS esti-mates that of the 7,85,000 PLHAs in Indiathat need ARV treatment, only 40,000receive access.The failure to meet these moving targetsis characterised by an overburdenedhealthcare system with staff that has lim-ited training in administering this strongdrug. Though there have been the occa-sional one-off initiatives to train physi-cians in ART, the lack of an overall co-hesive programme design that is imple-mented with precision, forced the Inter-national Treatment Preparedness Coali-tion (2005)13 to highlight the followingweaknesses in the system:–Ever-shifting deadlines to achieve tar-gets committed for ART delivery;–Lack of need-based target setting byNational AIDS Control Organisation(NACO);–Lack of enforcement of ART programmeimplementation guidelines; and–Lack of availability of second-lineregiment in the government’s ARTprogramme.It is important to look at specific, thoughsparse, mentions of treatment education inthe ‘Programme Implementation Guide-lines for a Phased Scale up of Access toAntiretroviral Therapy for People Livingwith HIV/AIDS’. First, here is the full textunder Section 17 of this report titled: ‘IECStrategy for Delivery of ART Delivery’,“Information on ART, demand genera-tion,treatment adherence, patient follow-up, community care and support,sensitisation of healthcare staff, involve-ment of PLHAs, partnership with othersectors for a multisectoral response”.Thereare other sections of the report thatsparingly mention plans to offerARTeducation to PLHAs and their rela-tives at the point of contact (ART centres,where drugs are handed over) and alsoeducation to physicians on “various is-sues” surrounding ART including stigmaand discrimination.In light of these particular points, it isinteresting to see observations made in theITPC report: “No treatment educationmaterials are available for PLWHA andthere are no government programmes thatexplicitly focus on treatment education.Though national ART guidelines mentiontreatment adherence, they are silent onhow PLHAs should be educated aboutART and helped to make informed deci-sions about their treatment options. In India,it is primarily the INP+–affiliated networksthat are providing treatment educationprogrammes, often establishing treatmentcounselling centres on the campuses ofART centres in high prevalence states. Sofar, neither NACO nor the State AIDSControl Societies (SACS) has producedtreatment educational materials forPLWHA”.There are two important additions to theabove discussion. One, draft report itselffell abysmally short of providing a definitestrategy for providing treatment educationin terms of an integrated strategic commu-nications campaign that would becustomised for various target audienceslike PLHAs, their relatives, healthcareprofessionals, policymakers, and the gen-eral public. Second, when a senior NACOofficial was informally asked about thelack of treatment education programmesat the 2006 International AIDS Confer-ence in Toronto, Canada, the feedback wasvague and indeterminable. In another con-versation at the same conference, a seniorBangalore-based consultant positionedthatan ART communications campaignwould weaken existing prevention effortsand could possibly lead to unsafe sexualpractices.But one of the primary reasons whytreatment education programmes aremuchneeded today is to break this exist-ing myth of treatment options being analibi for unsafe sexual behaviour. Addi-tionally, it must not be lost on us that theperils posed by current misconceptionsand attitudes on ART among PLHAs,healthcare workers and the public canpose immediate challenges in futuretreatmentadministration and effectivenessthat will be daunting to overcome in thelong run.Direction forTreatment Education InitiativesHaving identified the factors and con-texts that create a pressing need for ARVtreatment education initiatives in India, itis essential to proceed with a plannedapproach – making optimum use of exist-ing resources, and leveraging key strengthsin addressing those needs. By that account,we must highlight the potential of thepresent HIV/AIDS prevention campaigninfrastructure that is amply bolstered byinternational NGOs with funding fromforeign donors, in planning a research-based integrated strategic communicationeffort focused on ARV treatment education.
EPW
