South Africa has the largest number of people infected with HIV worldwide1 and the largest public antiretroviral therapy (ART) program in the world.2,3 Tuberculosis (TB) is among the leading causes of morbidity and mortality in South Africa and a common opportunistic infection in HIV patients.1,4
The South African Department of Health (DoH) has made both TB treatment and HIV care and treatment free of charge in public health care facilities to increase treatment accessibility.5,6 However, HIV and TB patients may still face financial hardships due to other health care–related expenditures, such as transport to and from the clinic, food and in some cases overnight accommodation near the clinic, expenditure on alternative sources of care including private doctors, pharmacies, and traditional healers, and income losses due to time spent seeking care.7,8 In this study, we aim to establish the true costs of health care utilization for patients receiving “free” HIV/TB care and treatment in rural KwaZulu-Natal.
Previous research suggests that patients bear costs—in both time and money—not captured in clinic fees. Routine surveillance data collected annually in the study area shows that the median time taken to travel to the nearest clinic is 81 minutes and the common mode of transport for most patients is by minibus taxis.9,10 These expenditures can lead to financial distress for patients already living in poverty. People may forego essential consumption to pay for health care by borrowing money from relatives or friends or resort to selling of assets, contributing to longer-term impoverishment.11–15 For HIV care and treatment in particular, time losses and out-of-pocket payments could amount cumulatively to very large sums, as treatment is life long.13,14
A key contribution of this study is the ability to compare health expenditures across both pre-ART and ART patients. Research focused on the health expenditures of pre-ART patients is scarce, yet it is important because it can provide insight into the barriers to retention during the pre-ART stage3 and patients' willingness and ability to transition to ART initiation when eligible.7 If ART initiation is associated with higher patient costs, eg, due to the higher frequency of clinic visits, then this may discourage pre-ART patients from remaining in care and lead to later-than-optimal initiation of ART. However, if patients experience high out-of-pocket expenditures in pre-ART care, eg, due to treatment of opportunistic infections, then ART initiation could be a financially attractive option and demand for earlier initiation could be high.3,16 The relative costs to patients of pre-ART vs. ART have significant implications for the successful rollout of treatment-as-prevention programs.
To provide insight into the true costs of health care seeking for public-sector patients, we set out to measure the financial and time-related costs of health care utilization among patients receiving “free” pre-ART, ART, and TB services in primary health care (PHC) clinics in rural South Africa. We assessed costs associated both with accessing public-sector care and with complementary utilization of traditional healers and private providers. Finally, we assessed whether these expenditures led to financial distress, as indicated by borrowing money or selling assets to finance care.
Study Area and Health Systems Context
We performed the study within the public-sector ART program of Hlabisa subdistrict, situated in northern KwaZulu-Natal, South Africa. HIV prevalence among adults in the rural Hlabisa subdistrict of KwaZulu-Natal in 2010 was 29%17 with incidence remaining high despite recent reductions in mortality and HIV acquisition due to the scale-up of ART.18–22 TB prevalence was almost 25% among those initiated on ART in 2006, and the population TB notification rate was approximately 928 cases per 100,000 in 2009, with evidence of emerging drug resistance.23
Since 2004, the Hlabisa HIV Treatment and Care Program (ART program) has provided free HIV treatment and care in 17 (16 at the time of the study) PHC clinics in the subdistrict; the program works in partnership with the DoH-TB program to provide free TB treatment in the same PHC clinics.24 The subdistrict is predominantly rural, about 90% of the population of approximately 228,000 individuals live in rural areas, with pockets of urban and peri-urban areas. All PHC clinics within the ART program (www.africacentre.ac.za)24 operate in accordance with the current South African DoH guidelines on HIV and TB management.5,23–26
Both HIV and TB care and treatment require repeated clinic visits to diagnose and manage these infections; ART and TB treatment can be collected on the same visit for coinfected patients. All PHC clinics offer HIV counseling and testing.24,27,28 When a patient tests HIV-positive, blood samples are sent to the National Health Laboratory Services at Hlabisa district hospital for CD4 cell count measurement, and patients return to the clinic for their results within a week from sample collection. Individuals who are not yet eligible for ART are instructed to return to the clinic every 6 or 12 months, depending on CD4 count.29 ART eligible patients attend 3 adherence counseling sessions and then initiate therapy. Patients initiated on ART are instructed to visit the clinic monthly to refill medications and for clinical observation.
Sputum from patients with suspected TB is sent to the National Health Laboratory Services for acid-fast bacilli smear testing.25,26 All smear-positive patients are initiated onto first-line standard TB regimen, and patients with negative smear who remain symptomatic are referred to Hlabisa district hospital for further assessment. TB patients collect treatment monthly from the PHC clinic; multidrug (MDR) and extensively drug (XDR) resistant TB cases are hospitalized for 1-2 months with further follow-up at PHC clinics.
Data Sources and Sampling
We measured the financial and time-related costs of health care utilization among patients using free pre-ART, ART, and TB services and other private health care services. Data were collected through exit interviews with 800 HIV and TB patients, with patients sampled to be representative of the patient population in the Hlabisa subdistrict public-sector health system. Data were collected on a wide range of health-related expenditures and time spent seeking clinical care. To assess whether these expenditures led to financial distress, we collected information on whether patients reported either borrowing money or selling assets to finance health care utilization.
We collected data in patient-exit interviews at the HIV and TB facilities from 2 cross-sectional surveys in the subdistrict. The first of these two surveys was the Hlabisa subdistrict component of a multisite study called Researching Equity in ACcess to Health care (REACH)15, which was conducted in 2009 and focused on patients using ART and TB services in PHC clinics. The ART and TB questionnaires for this survey were constructed using questions on access to health care that have been used, validated, and subjected to reliability analyses in multiple studies in sub-Saharan Africa (www.wits.ac.za/pdf/10500/10500_chp_10500_reach.pdf).15,30–32 We used the questions about patient affordability to establish the direct and indirect health care utilization expenditures in the study populations. The questionnaires were structured such that we started with simple and nonthreatening questions and ended with questions that were more sensitive or more difficult to answer.
Second, we extended the study to HIV-infected people not yet eligible for ART within the same PHC clinics in 2010 in Hlabisa subdistrict. We used a 2-stage cluster random sampling approach, first selecting a random sample of PHC clinics within the subdistrict drawn (with replacement) with probability proportional to size and then randomly sampling 60 patients in each facility in the second stage. The sample size for the final sampling unit (300 ART and 300 TB patients) was established through a formal power calculation to ensure a sufficiently large sample to detect significant differences in cost components while accounting for the expected clustering at the level of the PHC clinics where we approached patients for the interviews. Pre-ART patients (sample size 200) were randomly selected from the clinics included in the REACH study. To be included in the ART group, patients had to be on ART for at least 2 weeks; to be included in the TB group, patients had to have been on TB treatment for at least 2 months; pre-ART patients had to be ART naive. Four trained fieldworkers conducted the patient-exit interviews using the local language in the study area, isiZulu. The questionnaires were translated from English to Zulu and back-translated to English by certified translators to ensure that meaning and consistency were maintained in the translation. All 4 fieldworkers were native Zulu speakers, and all 4 had previously been trained and worked as fieldworkers in the population-based surveillance at the Africa Centre for Health and Population Studies. During the fieldwork, the study coordinator debriefed and discussed challenges with the fieldworkers. The study coordinator also continuously checked the interview forms for completeness and quality and provided feedback on interview issues to the fieldworkers once per week.
We received ethical clearance for this study from the University of KwaZulu-Natal (BF072/09 and BE174/08). We obtained written informed consent from all participants. Interviews were performed within the clinic premises but in a separate space outside the health care facility to ensure privacy and confidentiality for all participants.
Data were collected on different health-related financial expenditures, time spent traveling to and using clinical services, and indicators of financial distress due to health care expenditures.
We collected data on expenditures on 3 broad categories: costs of visits to the clinic, costs of other health care services, and costs associated with self care, each of which had a number of subcategories. Expenditures associated with clinic visits were assessed on a per-visit basis. Patients were asked: “In coming to receive treatment today, how much did you pay for: transport (one way), clinic/hospital fees, medicines, someone to take over your tasks while you are here including childcare, accommodation if you need to stay the night nearby, food during the visit, telephone, other, specify.” In addition patients were asked “Did you find it easy or difficult to incur these expenses?” Since most ART and TB patients had 1 visit per month, these single episode costs were taken to be monthly costs of seeking care at the clinic. To allow for the different visit schedules, we translated pre-ART patients' financial and time costs per clinic visit to monthly costs by dividing the financial and time costs by 3 (on average pre-ART patients are expected to make 4 clinic visits per year for CD4 count testing and clinical monitoring).5,29 Costs associated with other health care services and self care were assessed with reference to the past 4 weeks. With respect to other health care services, patients were asked about utilization and expenditure on “chemist/pharmacy, private doctor, traditional healer, other public or private hospital/clinics—inpatient stay or emergency/outpatient department.” To capture the costs of self care, we asked patients to report expenditure on “any other health care in the past month [eg, traditional medicines, spaza shops, special food, etc].” Spaza shops are informal convenience stores in South Africa, which sell a wide variety of food and health-related goods.33 The above health expenditures were aggregated to calculate “total expenditures in the last 4 weeks.” All expenditures were reported in South African Rand (USD 1 = ZAR 7.3, at the time of the study in 2010). We standardized the ART and TB patients' costs to 2010 for comparability with pre-ART patient costs taking into account inflation.34,35
Data were also collected on time-related costs associated with clinic visits. Data were collected on time (in hours) spent traveling to the clinic and time spent at the clinic, using the questions: “How much time did you spend at the clinic last time you came to collect your ARV or TB treatment?” and “How long did it take you to get here? (one way only i.e., time taken from leaving home to arriving at facility?)” Round-trip transit and utilization times were aggregated to calculate “total time costs” associated with clinic visits. As with financial costs, we divided pre-ART time costs by 3 to adjust for the different visit schedules.5,29
To enable comparisons between time and financial costs, we converted time spent in hours into equivalent monetary expenditure using an estimate of the opportunity cost of time. We calculated the rate of income per hour worked by dividing the Gross Domestic Product per capita for KwaZulu-Natal with the working hours per year and obtained an average hourly wage of ZAR 17.49.36,37 Evidence from the study setting finds 90% recovery of baseline employment levels among patients established on ART.38 To obtain time costs in Rand, we multiplied the monthly time spent during clinic visits and the travel times to the facility for pre-ART, ART, and TB patients by ZAR 17.49. We note that estimating the value of time in settings with very high unemployment is difficult, and therefore, we present time costs in hours as our main results.
Patients were asked how they paid for health care using the questions “In the last month, did you have to borrow money to pay for health care?” and “In the last month, did you have to sell personal or household items in order to pay for health care?” We constructed an indicator of “financial distress,” which took the value of 1 if individuals reported either borrowing money or selling personal or household items to pay for health care in the last month and 0 otherwise.13,15 We also elicited data on the disability grants that many ART and TB patients are eligible to receive to compensate for disease- and disability-related employment loss; most pre-ART patients are not eligible (and are not encouraged to apply) for the disability grants under the inability to work due to illness criteria unless they meet the criteria for reasons unrelated to their HIV infection. The question on disability grants was thus omitted for this group.39,40
The analysis proceeded in 3 steps. First, we used standard descriptive statistics to summarize the patient sociodemographic characteristics and time-related costs, financial costs, and financial distress indicators for pre-ART, ART, and TB patients. Second, to investigate whether patient type (pre-ART vs. ART vs. TB) was associated with differences in patient costs, we estimated multivariate regression models controlling for socioeconomic covariates and clustering standard errors at the clinic level. Third, we assessed the association between patient costs and financial distress in multivariate logistic regression models, controlling for sociodemographic characteristics and accounting for clustering at clinic level. We estimated separate logistic regression models for pre-ART, ART, and TB patients and a pooled model for all 3 groups, and we obtained predicted marginal effects after each model. When modeled as exposures, costs were expressed per ZAR 100. All analyses were performed using STATA version 11,41 and values of P < 0.05 were considered significant.
Pre-ART patients were more likely to be female (79% pre-ART, 62% ART, and 53% TB) and were significantly younger than ART and TB patients (Table 1). ART patients had been on treatment for more than a year, on average 19 months [95% confidence interval (CI): 17.3 to 20.5], and the average most recent CD4 count was 347.9 cells per cubic millimeter (95% CI: 321 to 375). Most TB patients (75%) reported that it was their first episode of TB; 83% had pulmonary TB and 17% had extrapulmonary TB. Most households of ART patients (92%) and TB patients (89%) were receiving social grants from the government; households with ART patients received a significantly higher average grant amount than households with TB patients (Table 1).
Patient Expenditures and Time Costs Associated With Clinic Visits
For all groups, transport was the largest expense associated with clinic visits, with a monthly cost of pre-ART (ZAR 5; 95% CI: 4 to 6), ART (ZAR 37; 95% CI: 29 to 45), and TB patients (ZAR 24; 95% CI: 21 to 28) (Table 2). Sixty-three percent of ART and 57% of TB patients reported using public transportation to and from the clinic (mode of transport data were unavailable for pre-ART patients). Food costs during the clinic visit also contributed to monthly expenditures associated with clinic visits: pre-ART (ZAR 2; 95% CI: 2 to 3), ART (ZAR 9; 95% CI: 8 to 10), and TB patients (ZAR 6; 95% CI: 5 to 8). None of the patients paid for medicines, and small amounts were reported to have been spent on childcare, overnight accommodation, cell phone airtime, and on clinic/hospital fees. Total monthly costs of clinic visits (excluding time costs) were higher for ART patients (ZAR 46; 95% CI: 38 to 55) and TB patients (ZAR 33; 95% CI: 27 to 39) than for pre-ART (ZAR 8; 95% CI: 6 to 9), largely due to the frequency of visits (Table 2). Most patients indicated that it was difficult to bear these expenses [pre-ART: 135 (81%), ART: 203 (86%), and TB: 185 (92%) P = 0.01].
Patients in the 3 groups spent about the same amount of money per month on health care (clinic visit costs combined with expenditures on other health care services)—ZAR 171 (95% CI: 134 to 207) for pre-ART patients, ZAR 164 (95% CI: 140 to 187) for ART patients, and ZAR 122 (95% CI: 104 to 140) for TB patients (Table 2). However, the 3 patient groups differed widely in the composition of their financial expenditures: pre-ART patients spent more on traditional healers, chemists, and private doctors (Fig. 1; Table 2) compared with their counterparts; although they spent less on transport. All 3 groups reported large expenditures on self care (Table 2). These results held up in multivariate regression, after controlling for sociodemographic characteristics (Table 3). Pre-ART patients spent less on transport costs (−34.0; 95% CI: −57.0 to −11.0) than ART patients. However, pre-ART patients spent significantly more on traditional healers (29.2; 95% CI: 12.2 to 46.2) and private chemists/private doctors (25.9; 95% CI: 10.3 to 41.6) than ART patients, who spent very little on traditional, complementary, or alternative sources of care.
Financing Patient Expenditures
For a single clinic visit, pre-ART patients reported spending significantly more hours at the clinic (3.5; 95% CI: 3.2 to 3.8) than both TB (1.1; 95% CI: 1.0 to 1.3) and ART patients (2.8; 95% CI: 2.5 to 3.0); ART patients spend significantly more time at clinics per month than either pre-ART or TB patients. There was no significant difference in average travel time across the groups (Table 2).
About one-third of patients borrowed money in the last month to pay for health care: 39% of TB patients, 29% of pre-ART patients, and 36% of ART patients. Fewer than one tenth of patients had sold personal or household items to finance health expenditures (Table 2). There was no difference in the average amount borrowed across all patient groups: pre-ART patients [ZAR 178; 95% CI: 128 to 229; median 100; interquartile range (IQR) 50–200], ART patients (ZAR 177; 95% CI: 97 to 256; median 104; IQR 42–209), and TB patients (ZAR 154; 95% CI: 108 to 201; median 94; IQR 31–209). Financial distress (as indicated by either borrowing money or selling assets) was high in all groups: TB patients (41%), pre-ART (31%), and ART (39%) (Table 2).
Factors Associated With financial Distress Due to Using Healthcare
Being male or having an unemployed head of household among pre-ART patients was associated with more than twice the odds of being financially distressed (Table 4). Computing marginal effects, for each ZAR 100 in financial expenditure, the probability of reporting financial distress increased by 6.6% points (95% CI: 4.9 to 8.3). For every hour spent at the clinic using health care, the probability of reporting financial distress increased by 5.5% points (95% CI: 3.4 to 7.6).
We show evidence of high health care–related financial expenditures and time costs among adults using public-sector HIV and TB services, although these services are provided free at point of service. Monthly private health expenditures were estimated at ZAR 171 for pre-ART patients, ZAR 164 for ART patients, and ZAR 122 for TB patients. From the patient perspective, these expenditures are very large, especially in a study area with high unemployment rates and dependency on social grants, representing over one third of median per capita income (ZAR 401) among Zulu-speaking South Africans.42 In this light, it is not surprising that 31%–41% of our samples reported that health expenditures led to financial distress, with many patients driven into debt by health expenditures. Furthermore, and contrary to popular perception, patients' private contributions are a significant component of total spending for public-sector health care. Including the public-sector contribution to ART treatment—estimated at $682 (ZAR 4979) per patient per year at the facility level43—ART patients' private health expenditures represent over a quarter of the full cost of a patient being on ART. In addition to financial expenditures, patients face substantial time costs associated with care seeking, primarily due to the time required to travel to clinic visits. These patient costs are very likely large enough to influence ART and TB treatment uptake, adherence, and retention. Interventions to reduce the private costs of care could increase early treatment initiation and sustained viral suppression with benefits for patients and potentially large spillover effects in reducing onward transmission.
A critical gap in the HIV cascade of care has been the transition from pre-ART to ART, with high attrition from pre-ART care,3,44,45 and many patients are still initiating ART at low CD4 counts.3,45 One common explanation for this gap is the perception that the patient-borne costs of ART are significantly higher than the costs during pre-ART due to the burden of frequent and lengthy clinic visits to pick up medicines and that these costs discourage patients from initiating as early as they might. This theory is not supported by the data in this setting. Costs for ART patients were indeed large. However, expenditures were as high for pre-ART patients, who spent significant private resources on traditional healers, pharmacies, and private doctors. Use of alternative health care providers is common in South Africa and can result in hidden costs of illness that are not captured in facility-based costing studies.7,15,46,47 We find that HIV patients, if not yet eligible for ART, tend to seek alternative (and likely less efficacious) forms of therapy implying that the demand for treatment for HIV is high among HIV patients.47,48
Much has been made of the pattern in which HIV patients use both ART and traditional, complementary, and alternative medicines simultaneously.47 Interestingly, private expenditures on alternative sources of care all but disappeared for patients who had initiated ART, suggesting that in fact ART and alternative medicines may be substitutes rather than complements in this population.7,15,46,47 A likely explanation is that once patients initiated ART, they no longer had the symptoms for which they were seeking alternate sources of care. These findings have powerful implications for the rollout of HIV treatment-as-prevention programs, suggesting that demand for early ART may be higher than previously thought and that initiating ART may not impose large financial burdens on patients, but rather relieve them from other health expenditures on less efficacious therapies. Reports of financial distress, although common, did not differ significantly between pre-ART and ART patients, alleviating concerns that HIV treatment-as-prevention strategies may increase the financial burden of health care for patients and lead to low uptake.
Transport was the single largest cost component for all patients groups, similar to what has been reported elsewhere, and contributed to high expenditures among ART and TB patients who have frequent clinic visits.8,14,15,49 Many patients use public transport to visit the clinic,7,10 but road networks are poor in most rural areas making it costly to access some clinics.50 Three in five patients walked to the clinic, while two in five used public transport.9 Both TB and ART patients are instructed to make monthly clinic visits to collect their medicines, whereas those not yet eligible for ART are instructed to make about 4 clinic visits per year. Two of these 4 visits in pre-ART care are for physical examination and blood taking for CD4 counts; the other 2 are to receive the CD4 count results and to decide on treatment eligibility. Interventions to reduce transport costs, eg, a medicine delivery service, less frequent clinic visits for stable patients, or transport vouchers for poor households, could substantially improve patient welfare and lead to better treatment outcomes.51,52 Importantly, because ART patients have more frequent clinic visits than pre-ART patients, any reductions in transport costs associated with clinic visits will lower the relative cost of ART from the patient perspective and could lead to even greater demand for early ART.
Our study has several limitations. First, due to the nature of the clinic-based sampling strategy, we excluded people in need of health care who did not access health care, including those who did not access health care because they could not afford it. In previous research, we found that distance to the nearest clinic strongly predicts ART initiation, suggesting that transport costs may discourage some HIV patients from seeking care.53 The long run costs of forgoing care may be substantial but are excluded from this analysis. Second, it is possible that our cross-sectional comparisons across patient types—pre-ART, ART, and TB—were confounded by unobserved factors. We controlled for employment status of household head and basic demographics; furthermore, by design, all 3 groups are patients who have sought clinical care for HIV or TB. However, as in most observational studies, unmeasured factors could influence our effect estimates. Third, time costs associated with care seeking outside the clinic were not assessed in the survey and could not be included in the analysis. Given the higher utilization of alternative care among pre-ART patients, this omission would bias pre-ART patient costs downward, implying that one of our main conclusions—that patients do not pay more for ART than for pre-ART would still be valid in this case. Fourth, in this study, we have assessed the costs of health care utilization from the perspective of individual patients. An important additional perspective is the costs of patients' health care utilization to their households. Although our study focused on the individual, our findings that large proportions of patients reported that they had to borrow money or sell assets to pay for health care is likely to imply substantial household financial burdens due to patients' health care utilization for pre-ART, ART, and TB. In particular, assets, such as livestock, bicycles, tables or televisions, are commonly shared among household and even community members, and their sale thus likely affects people who are socially linked to the patients we have interviewed here. The spillover effects of health care utilization to household and community members are an important area for future research, including the broader impacts on household activities, time use, and economic status. Finally, we report data for only one rural district in South Africa. However, we note that the study setting has many characteristics common to rural areas in South Africa and neighboring countries: extensive use of traditional healers, a socioeconomic context of high cyclical migration and unemployment, and a very high HIV burden. Further research will be needed to demonstrate generalizability to other settings.
HIV and TB patients receiving nominally free care, nevertheless, face considerable costs due to health care expenditures and the time costs of seeking care. Interventions to reduce patient costs could improve progression through the HIV cascade of care.54,55 ART patients have much lower expenditures than pre-ART patients on traditional healers, private doctors, and pharmacies, suggesting that ART serves as a substitute for alternative treatments. These findings imply high demand for some form of HIV treatment among HIV patients and that initiating patients earlier onto ART could be cost saving for patients, in addition to yielding health benefits for patients56 and for society at large.22,57
The authors would like to acknowledge the fieldworkers from the Africa Centre for Health and Population studies who collected the data—Mlungisi Mthetwa, Sibongiseni Mthetwa, Nomusa Mkhabela, and Cynthia Ncube, the staff working at the clinics and patients attending the primary health care clinics for their support and participation in this study. The authors would like to acknowledge the principal investigators, team members and the collaborating sites for the Researching Equity in ACcess to Health care (REACH) multisite study, and the principal investigators and research team members of the Impact of ART on HIV epidemic dynamics study. Special mention goes to Lorna Benton for proofreading and editing an earlier version of the article.
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Keywords:Copyright © 2015 Wolters Kluwer Health, Inc. All rights reserved.
borrowing; selling assets; financial distress; health care costs; HIV; TB; out-of-pocket; health expenditure; time use; South Africa; ART; pre-ART; retention; costs