JAIDS Journal of Acquired Immune Deficiency Syndromes:
Implementation and Operational Research: Epidemiology and Prevention
Reduced Adherence to Antiretroviral Therapy Among HIV-Infected Tanzanians Seeking Cure From the Loliondo Healer
Thielman, Nathan M. MD, MPH*,†,‡; Ostermann, Jan PhD*,†; Whetten, Kathryn PhD*,†; Whetten, Rachel MPH*; Itemba, Dafrosa MSCED§; Maro, Venance MD‖; Pence, Brian PhD*,†,¶; Reddy, Elizabeth MD†,‡,‖; The CHAT Research Team
*Center for Health Policy and Inequalities Research;
†Duke Global Health Institute, Duke University, Durham, NC;
‡Division of Infectious Diseases, Department of Medicine, Duke University Medical Center, Durham, NC;
§Tanzania Women's Research Foundation (TAWREF), Moshi, Tanzania;
‖Kilimanjaro Christian Medical Centre (KCMC), Moshi, Tanzania; and
¶Department of Community and Family Medicine, Duke University Medical Center, Durham, NC.
Correspondence to: Nathan M. Thielman, MD, MPH, Duke Global Health Institute, Duke University, Duke Box 90519, Durham, NC 27708 (e-mail: firstname.lastname@example.org).
Study concept: N.M.T., J.O., K.W., B.P., and E.R. Data acquisition: R.W., D.I., and V.M. Analysis: J.O., N.M.T., K.W., B.P., and E.R. Drafting article: N.M.T., E.R., and J.O. Approval of final article: All the authors.
Presented in part at the 19th International AIDS Conference, July 22–27, 2012, Washington, DC. Abstract no. MOPE436.
Supported by Grant 5R01MH078756 from the National Institute of Mental Health and the Duke Center for AIDS Research, 5P30-AI064518-08. KL2 RR024127-04 provided salary support for Dr Reddy. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
The authors have no conflicts of interest to disclose.
CHAT Research Team: Bernard Agala, Beatrice Lema, Yombya Madukwa, Restituta Mvungi, Amiri Mrema, Wendy Ricky, Ludovic Samora, and Blandina Zenze.
Received August 28, 2013
Accepted August 28, 2013
Abstract: The predictors for seeking alternative therapies for HIV-infection in sub-Saharan Africa are unknown. Among a prospective cohort of 442 HIV-infected patients in Moshi, Tanzania, 249 (56%) sought cure from a newly popularized religious healer in Loliondo (450 km away), and their adherence to antiretrovirals (ARVs) dropped precipitously (odds ratio = 0.20, 95% confidence interval: 0.09 to 0.44, P < 0.001) after the visit. Compared with those not attending Loliondo, attendees were more likely to have been diagnosed with HIV more remotely (3.8 vs. 3.0 years before, P < 0.001), have taken ARVs longer (3.4 vs. 2.5 years, P < 0.001), have higher median CD4+ lymphocyte counts (429 vs. 354 cells/mm3, P < 0.001), be wealthier (wealth index: 10.9 vs. 8.8, P = 0.034), and receive care at the private versus the public hospital (P = 0.012). In multivariable logistic regression, only years since the start of ARVs remained significant (odds ratio = 1.49, 95% confidence interval: 1.23 to 1.80). Treatment fatigue may play a role in the lure of alternative healers.
In 2010, more than 5 million persons living with HIV/AIDS in sub-Saharan Africa were receiving antiretroviral therapy (ART), and this number is estimated to increase substantially.1 Although antiretroviral (ARV) adherence in resource-poor settings is as good as, if not better than, that in North America,2–5 adherence may decline over time.3,6–8
Well-documented reasons for incomplete ARV adherence in low-resource settings include limited financial resources, transportation barriers, and user fees9–16; younger age4,13; complexity of ARV dosing and side effects4,14; stigma and lack of disclosure11,13,17–19; depression6,18,20–22; and active substance abuse.18,21–23 The influence of traditional or spiritual healers, however, is unclear. Extant reports involve relatively small numbers of individuals reporting sporadic contact with various healers.24–27 None describes a mass phenomenon where a population quickly and suddenly believes in the healing powers of an individual and acts on that belief.
In August 2010, in the remote village of Sumunge, in Loliondo, Tanzania, a retired Lutheran minister began offering a 1-dose herbal cure for HIV and other chronic illnesses.28 The remedy, for which he charged 500 Tanzanian shillings (approximately US $0.31), was prepared by saying a prayer, boiling the root of the Mugariga tree (Carissa spinarum), cooling the brew, and dispensing it in cups to participants. As media reports spread across Tanzania and East Africa, tens of thousands of individuals sought healing, and by March 2011, traffic to the village was backed up for 15 km.29 As part of the Coping with HIV/AIDS in Tanzania (CHAT) study,30 a longitudinal cohort study initiated in 2008 to explore associations between psychosocial characteristics, HIV medication adherence, and health outcomes among HIV-infected individuals in Moshi, Tanzania, we observed a high proportion of study participants traveling to Loliondo to receive the cure. We describe Loliondo attenders and nonattenders and corresponding ARV adherence rates.
HIV-infected individuals, aged 18–64 years, were enrolled from Kilimanjaro Christian Medical Centre (KCMC, a private zonal referral hospital, N = 228) and Mawenzi Regional Hospital (a public facility, N = 271) between November 2008 and October 2009. Participants were followed longitudinally using in-person surveys and clinical exams semi-annually and HIV RNA levels annually. Survey instruments included sociodemographic data and information on religion and spirituality, beliefs about and interactions with nontraditional healers, self-reported health status (SF-8), HIV testing history, and household assets. The survey instruments were translated from English to Kiswahili and back-translated to English to confirm translation validity. Trained interviewers recorded participant responses using Entryware version 6.4 (Techneous, Vancouver, BC).
This analysis is restricted to participants taking ART at their last study visit before the widespread popularity of the Loliondo healer (N = 441). Participants reporting no missed doses in the previous 3 months were considered adherent.
Trends for the general popularity of the Loliondo healer were estimated using Google Insights for Search (www.google.com/insights/search/) that computes the number of searches for a given term relative to the total number of searches over time. For data presented, the term “Loliondo” was used. Loliondo attendance among CHAT participants was captured initially through a follow-up question for clients reporting interactions with traditional healers. Starting in June 2011, patients were asked explicitly if they had personally sought healing at Loliondo from Babu Mwasapile. Loliondo attenders were asked about transportation costs, if they believed that “drinking from the cup” improved or healed their HIV, and if they were advised to stop taking their medications.
During the third wave of surveys (completed by August 2010), participants were asked about involvement in both organizational and nonorganizational religious activity: “How often do you attend church or other religious meetings?” and “How often do you spend time in private religious activities, such as prayer, meditation, or study of holy scriptures?”31 Additionally, participants were asked how important for healing is each of the following: faith healing by religious leaders, medical doctors, personal prayer and spirituality, traditional healers, witchdoctors, and herbalists.
Participants were asked to rate their health over the past 4 weeks during semi-annual surveys. At annual clinical assessments, HIV RNA levels were obtained per study protocol, and CD4+ lymphocyte counts were abstracted from clinical records. A wealth index consisting of 8 assets and 3 characteristics of the living environment was constructed by applying to each component variable its estimated contribution to the 2010 Tanzania Demographic and Health Survey wealth index (R2 = 0.9452, Kilimanjaro Region).
Student t tests and logistic regression were used to assess the significance of differences in sociodemographic characteristics, spirituality, health status, HIV medication history, and treatment outcomes between Loliondo attendees and nonattendees. The association between Loliondo attendance and adherence was analyzed using a random-effects logistic regression model, where individual-level adherence was modeled as a function of the number of quarters since respondents' Loliondo visit, as well as a linear function of time, the effect of which was allowed to differ between Loliondo attendees and nonattendees.
Among 442 CHAT participants on ART, 249 (56%) reported visiting Loliondo and 240 indicated specifically that they “drank from the grandfather's cup.” Figure 1A shows the proportion of participants, by Loliondo attendance status, reporting complete adherence to ART during the previous 3 months. Temporal trends in the number of participants who traveled to Loliondo parallel those of Google searches for “Loliondo” (Figure 1C). During the second quarter of 2011, following the height of the healer's popular appeal, adherence rates dropped sharply among Loliondo attenders versus nonattenders, but at subsequent observations, adherence patterns were comparable. The effect of Loliondo attendance on adherence was significant for the first quarter after participants' Loliondo visit (odds ratio = 0.20, 95% confidence interval: 0.09 to 0.44, P < 0.001, compared with pre-Loliondo values). We examined rates of virological failure (increase in HIV RNA level to >400 copies/mL) among 376 participants who had viral load measurements both before and after the rise in popularity of the Loliondo healer during late 2010. There was no difference in the rate of virological failure between Loliondo attendees (10/214, 4.7%) vs. non-attendees (9/131, 6.9%, P = 0.467). As shown in Figure 1B, the rate of virological suppression below 400 HIV RNA copies per milliliter was lowest (71%) among Loliondo attendees reporting incomplete adherence during the second quarter of 2011.
In bivariate analysis (Table 1), Loliondo attenders were more likely than nonattenders to be older (43.2 vs. 40.8 years, P = 0.003), widowed (34.1% vs. 23.3%, P = 0.013), and Lutheran (30.6% vs. 21.2%, P = 0.027). No differences were found with respect to spiritual practices or beliefs regarding healing. Although Loliondo attenders versus nonattenders perceived no significant differences with respect to their health and had similar nadir CD4+ lymphocyte counts, Loliondo attenders were more likely to have been diagnosed with HIV more remotely (3.8 vs. 3.0 years before, P < 0.001), to have been on ART longer (3.4 vs. 2.5 yr, P < 0.001), and to have higher median CD4+ lymphocyte counts (429 vs. 354 cells/mm3, P < 0.0001). Loliondo attenders were wealthier than nonattenders (10.9 vs. 8.8, P = 0.034, using predicted wealth index), and attendance was more common among patients of the private referral hospital (P = 0.012). In multivariable logistic regression, only years since start of ART was significant (odds ratio = 1.49, 95% confidence interval: 1.23 to 1.81).
The median transportation cost to attend Loliondo was 80,000 Tanzanian shillings (interquartile range, 60,000–100,000, US $51, N = 241). One quarter of Loliondo attenders (57/234) believed that the treatment improved or healed their HIV infection. Twelve of 226 (5%) reported being advised to stop taking their HIV medications. Of 12 who reported discontinuing medications, 6 resumed medications within 2 weeks.
The majority of participants taking ARVs in this cohort from Northern Tanzania sought an herbal cure for HIV from a spiritual leader. Visiting the healer was associated with a significant, but impermanent, decline in ARV adherence. Treatment fatigue seemed to play a significant role in the lure of the healer, as duration of ARV use was independently associated with attendance. Other factors, including those not measured, likely played a role. Being older, widowed, and Lutheran (the denomination of the healer), having been diagnosed with HIV longer ago and engaged in HIV care for longer, attending a particular clinic, and having higher predicted wealth were each associated with Loliondo attendance in bivariate analysis. Previous measures of spirituality and beliefs about divine healing did not predict attendance. The possibility of cure, even from a healer outside of one's religious tradition, was so attractive that many patients were willing to incur significant costs, travel for hours, and disrupt years of sustained ART adherence. Insignificant decreases in virological suppression among Loliondo attenders, including the subgroup reporting incomplete adherence, were noted. That these changes were insignificant is likely a function of both resumed adherence and the temporal disconnect, at the individual patient level, between Loliondo attendance, adherence assessments, and viral load measurements.
The interaction between religiosity and adherence to ARV adherence in sub-Saharan Africa is complex. For example, Zou et al32 found that 81% of 438 urban and rural Tanzanian church-goers believed that HIV could be cured by prayer; however, a large majority of respondents (94%) indicated that they would start ARVs if diagnosed with HIV infection. Kisenyi et al,33 in a cross-sectional study of 220 Ugandan patients on ART, found higher adherence levels correlated with greater behavioral religiosity. However, rare instances of HIV-infected patients discontinuing ARVs as a result of belief of healing through spiritual means have been clearly documented.24 Less is known about the appeal of herbal remedies. In Uganda, one third of 401 patients on ART reported using herbal medicines, primarily to treat symptoms such as fever or cough; lower ARV adherence was associated using with herbal medicine, but it did not seem that patients were taking herbal medications explicitly as a substitute for HIV therapy.34
The combination of faith healing and traditional herbal medicine offered by the widely-publicized Loliondo healer presented an attractive opportunity for patients facing a lifetime of medication to maintain health. The significant decline in adherence associated with Loliondo attendance highlights the marketability of hope for a true HIV cure, especially among those who have taken ART for longer, and underscores the importance of ongoing patient education regarding alternative therapies.
We note several limitations of this report. As an observational study, we identify associations but cannot invoke causality. Multiple key measures, including adherence to ART and Loliondo attendance were self-reported, raising the possibility of social desirability bias. Identical adherence questions, however, were asked repeatedly, and it is unlikely that respondents would provide socially desirable answers during one survey over another. In addition, adherence was measured solely using self-reports. It is also possible that some who reported not attending Loliondo did actually attend. However, given the popularity of the healer,29 the absence of stigma attached with attendance, and an emphasis on confidentiality during the survey process, it seems doubtful that participants would mischaracterize participation to surveyors. Finally, the data were collected using structured survey instruments, and qualitative interviews were not performed.
The findings from this study have implications for researchers, policy makers, and care providers. Additional research is needed to understand the trade-offs patients make in seeking the uncertainty of a one-time cure in exchange for adherence to proven life-saving medications. Would the lure have been the same if a physical element (namely, drinking from the cup) had not been present? Was the perceived cure thought to be effected more by the herbal drink or by divine healing? What social dynamics led to the rapid rise and then the rapid decline in popularity of the healer? Why did adherence rates improve with continued observation? Robust, mixed-methods techniques and interdisciplinary research will be required to answer these and other questions. Policy makers should consider ways to engage spiritual and religious leaders in respectful dialog that seeks bidirectional understanding of the theological, social, and medical issues at stake for HIV-infected individuals who seek alternate therapies. Finally, findings from this study have implications for HIV providers and others caring for patients with chronic diseases. Medical providers are rarely trained to engage patients about religious beliefs and spiritual practices, much less probe patients' interactions with various healers. In the United States, physicians are divided regarding how best to broach the topic.35 Health care providers may hold stereotypes about the “kind of patient” who holds particular beliefs and therefore refrain from conversations about the beliefs and practices. The provision of care to patients who are drawn to nonmedical cures requires awareness, sensitivity, and compassion to negotiate effective and acceptable treatment strategies within that patient's worldview.
More than half of the HIV-infected patients in this cohort participated in a highly publicized religious healing activity, and participation was temporally associated with decreased ARV adherence. Only the duration of time since starting ART was independently associated with participation. Recognizing and addressing the lure of alternative cures for HIV infection and their impact on adherence is critical to the continued success of HIV care and treatment programs in resource-poor settings.
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HIV/AIDS; antiretroviral therapy; adherence; faith healing; traditional healing; Global Health; Africa
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