Alternative options to ART and alternative uses for ART as barriers to uptake and adherence: insights from rapid research in 21 Zambian and South African communities

Abstract

Background: Both alternative options to and uses of ART present challenges to the universal test and treatment (UTT) approach. In preparation for a community randomized trial of ’’universal test-and- treat’’ (HPTN 071 (PopART), one component of rapid qualitative research aimed to document alternative options and non-prescription uses of ART. Methods: Individual interviews, group discussions and observations were used to collect data in 21 Zambian and South African community sites between December 2012 and May 2013. Data on alternative options and uses were captured mainly by observations, photographs and informal conversations and when groups or individuals discussed HIV prevention, HIV related stigma and reasons for not taking ART. Rapid data analysis was carried out to give feedback to trial implementers and research communities followed by finer themed analysis. Results: It was challenging to rapidly obtain data on alternative options to ART with findings emerging through probing or incidentally. Participants identified faith healing and ’’herbal remedies’’ as alternative options to ART - used either prior to, concurrent with or as a deliberate alternative to ART. Underlying these alternative practices were concerns about health system constraints and a desire to cure HIV. In Zambia, ’’Back to Eden’’ was a generic term for herbal immune booster remedies; South African participants referred to herbal ’’mixtures’’. In Zambia faith healing of HIV in Pentecostal churches through church vigils or television was an alternative option in all sites. In South Africa ’’rastafari beliefs’’ provided a less widespread alternative. In some Zambian communities, certain pastors were reported to have explicitly told PLWH among their followers to ’’throw away’’ their ARVs, claiming prayer alone would provide a cure. In both countries, ARVs were reportedly sometimes used as recreational drugs (’’sniffed’’ or ’’smoked’’) and/or resold. Other uses of ARVs reported in a few Zambia sites were as a skin-bleaching product and an additive to chicken feed. Conclusions: Alternative options to ART are varied in type and consequences, often hard to ’’see’’ and offer competing discourses. An emerging black market in ARVs is evident. It is critical for UTT to recognize, monitor, engage with and research these alternatives.

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GENERAL FINDINGS
• Participants described common narratives that ‘some community members’ believe in the
effectiveness of ‘other things’; usually, healing through faith or herbal remedies.
•Many PLWH participants indicated that they had/were considered/ing ‘alternatives’ to ART,
either instead of ART or concurrent with ART.
• Many participants (particularly in South Africa) articulated that these alternatives’
effectiveness is dubious, sharing stories of opting for alternatives leading to death/illness.
• Many participants, including some advocates of ‘alternatives’ (again, more prominently in
South Africa), drew a distinction between belief in the physical health benefits of ART and the
cultural, spiritual, and ‘whole-person’ health benefits of ‘alternatives’.
•Participants described two main reasons why people might look for alternatives to ART:
−Challenges experienced in the health system, including fears over the sustainability of ARV
supply (these fears where expressed more often in Zambia)
− Hopes for a cure and an escape from ‘lifelong treatment’
•Many participants (particularly in Zambia) recounted personal or apocryphal stories of
experiences with false claims of cure and charlatan healers or pastors.
•Participants were much less likely to recount alternative uses for ARVs, though these were
observed and appear to be present in all 21 community sites.
ALTERNATIVES OPTIONS TO ART RECOUNTED BY PARTICIPANTS:
1. ‘Immune Boosters’ – mixes of herbs and substances (sourced locally or internationally).
Crocodile fat, aloe vera, ‘sondashi’ formula (in Zambia) and ‘magogotha’ (herbs), ‘EC’ foods,
seafood tablets, African potato, herbal detox, and marijuana (in South Africa).
2. Faith Healing – especially in Zambia and linked to Pentecostal churches. Included ‘healing
sessions’ with all night prayer, cleansing rituals and pastors advocating throwing away ARVs.
3. Traditional Healers – some of whom work with formal HIV health services (particularly in
South Africa), referring PLWH for treatment while managing meta-physical ‘causes’ and
related symptoms.
4. Rastafarian Beliefs – Mostly in South Africa, in parallel or complementary to traditional
African medicines, linked to an ideology of ‘the land’ providing all ‘the people’ need.
ALTERNATIVES USES OF ARVs:
1. Recreational use of ART; more widespread in South Africa. ARVs (particularly efavirenz)
reportedly either ‘sniffed’ or ‘smoked’, often in combination with other drugs.
2. As a chicken feed supplement; only reported/observed in Zambia, in some community sites.
3. As a skin bleaching product; only reported/observed in one community site in Zambia.
We would like to thank: The Zambian MOH and MCDCH, and the
South African DoH and implementing partners, as well as all the
communities and participants. HPTN 071 is sponsored by the
National Institute of Allergy and Infectious Diseases (NIAID) under
Cooperative Agreements UM1-AI068619, UM1-AI068617, and UM1-
AI068613, with funding from the U.S. President's Emergency Plan
for AIDS Relief (PEPFAR). Additional funding is provided by the
International Initiative for Impact Evaluation (3ie) with support from
the Bill & Melinda Gates Foundation, as well as by NIAID, the
National Institute on Drug Abuse (NIDA) and the National Institute of
Mental Health (NIMH), all part of NIH. The content is solely the
responsibility of the authors and does not necessarily represent the
official views of the NIAID, NIMH, NIDA, PEPFAR, 3ie, or the Bill &
Melinda Gates Foundation.
•Ethnographic research would be a more appropriate research approach for this enquiry.
•PLWH regard ART as one of several treatment options, particularly in Zambia (although many
regard ART as the best of these options).
•There is some evidence of a black market for ARVs in these communities.
•Further research into both alternatives to, and alternative uses for ART is recommended.
•HIV stakeholders (particularly in Zambia), including formal health providers, should continue
consistently challenging the efficacy of alternative options, building on experiences of PLWH who
have tried alternatives, in addition to information on the efficacy of ART itself.
Presented at the
20th International AIDS Conference
Melbourne, Australia
July 23, 2014
Poster Number: WEPE333
Alternative options to ART and alternative uses for ART as barriers to
uptake and adherence: insights from rapid research in 21 Zambian and
South African communities
Bond V1,2, Chiti B1, Simuyaba M1, Mantantana J3, Abrahams K3, Ayles H1,4, Beyers N3, Bock P3, Fidler S5, Hargreaves J9,
Hayes R6, Hoddinott G3, Ndubani R1, Seeley J2,7, Simwinga M1,2, Viljoen L3 and Musheke M1
1Zambia AIDS-related Tuberculosis Project (ZAMBART), Lusaka, Zambia; 2Department of Global Health and Development,
Faculty of Public Health and Policy, London School of Hygiene and Tropical Medicine; 3Desmond Tutu TB Centre,
Department of Paediatrics and Child Health, University of Stellenbosch; 4Department of Clinical Research, Faculty of
Infectious and Tropical Diseases, London School of Hygiene and Tropical Medicine; 5Imperial College London;
6Department of Infectious Disease Epidemiology, Faculty of Epidemiology and Population Health, London School of
Hygiene and Tropical Medicine; 7MRC/UVRI Uganda Research Unit on AIDS
BACKGROUND
CONCLUSIONS
“DELIVERANCE HAS MADE PEOPLE DIE … THEY STOPPED … THEIR MEDICATION” (PLWH, Z9)
PRESENTATION OF FINDINGS
RESEARCH METHODS
KEY FINDINGS
•Individual interviews, group discussions and observations were used to collect data in 21
communities (12 in Zambia and 9 in South Africa) between December 2012 and May 2013.
•Data on alternative options to and uses of ART were collected through direct questions within
key informant interviews (n=65) and group discussions with HIV ‘specialists’ and community
groups (n=797 participants). Structured observation activities – particularly a spiral (transect)
walk through the communities and church observations – provided additional findings.
•Other group discussions (n=33) with health committees and PLWH provided contextual data.
•Rapid data analysis was carried out to give feedback on descriptive findings to trial
implementers and research communities.
•This was followed by finer themed analysis to answer the questions: (a) what did participants
think of as alternatives to ART – and how much faith did they have in these as genuine
treatment options – and (b) what other uses are ARVs put to?
•The rapid research methodology limited our ability to broach this topic as it was often implicit,
clandestine, or informal and so hard to ‘see’ and ‘talk about’.
•Consistent ART is the only HIV treatment intervention with proven biomedical effectiveness.
•Governmental and donor-supported treatment programmes (justifiably) place a strong
emphasis on the roll out and uptake of ART, particularly in high burden contexts. With the
increasing additional global focus on the preventative benefits of ART, this emphasis is likely
to increase.
•A repeatedly reported concern for the effectiveness of such a biomedical intervention is that
in many contexts (including those of highest disease burden in southern and east Africa)
there are alternative paradigms to health: predominantly ‘traditionalist’ and ‘faith-based’.
•There are also related concerns that ARVs are put to non-treatment uses, leading to parallel
or ‘black’ markets for the drugs.
•One component of rapid qualitative research preceding a community randomised controlled
trial of combination HIV prevention (HPTN 071) using a BBS methodology (see poster:
THPE214) aimed to document such alternative options to and non-prescription uses of ART.
ALTERNATIVE USES
•RECREATIONAL
DRUGS
•ADDITIVE TO
CHICKEN FEED
•SKIN BLEACHING
•SOLD ON THE
BLACK MARKET
“Yes, they sniff it as a drug
in x. Yes it is there in x, they
use it like a drug, what it is,
that this Truvada and
Effervarance. They sniff [it]
just like the way they smoke
Marijuana, they use it like a
drug, like cocaine”
(PLWH, Z9)
“Those pills are smoked to
get high ... those pills aren’t
intended for my body,
they’re intended for head”
(KII, S19)
Figure 1: The Post (Zambia), 23rd April 2014
ACKNOWLEDGEMENTS
“ARVs include our herbs…”
(Rastafarian healer , S21)
“Among traditional healers,
there is one man in Z12 who
gives out roots as treatment
for HIV and tells people to
stop taking ARVs”
(HIV specialists, Z12)
“At our church, our patients
are told that HIV is a demon;
any disease is a demon in
Pentecostal churches. We
have come across so many
patients and some have
even died now; this issue of
faith-healing is happening
and is so common and it’s
real in Z4 community”
(PLWH, Z4)
“Deliverance has made
people die because they
stopped taking their
medication”
(PLWH, Z9)
ALTERNATIVE OPTIONS
“
•IMMUNE BOOSTERS
FAITH HEALING
TRADITIONAL HEALING
RASTAFARIAN BELIEFS
Zambia: Z10, Spiral Walk Activity
Zambia: Z10, Spiral Walk Activity