This national TB cost survey established that up to 53% of Ugandan TB affected households incur TB-related costs that are higher than 20% of their annual household expenditures, despite the free TB care policy. The survey also identified the main cost drivers as non-medical expenditure such as travel, nutritional supplements and food.
The proportion of 53% of TB affected households experiencing catastrophic costs is lower than was found in similar studies done in Vietnam, Ghana and Myanmar [7, 12, 13] but higher than was found in Kenya and Indonesia [14, 15]. This difference could be explained by the differences in the geographic, health system and economic profiles of the countries.
TB patients incur direct medical, direct non-medical and indirect costs while they seek care. The study found direct non-medical costs to be the biggest drivers of catastrophic costs, with most of the costs incurred on nutritional supplements, travel and food. This is consistent with findings from similar surveys conducted elsewhere [7, 14, 16]. Data from previous studies have highlighted the contribution of food and transportation to the nearest TB care service on indirect costs; putting the figures at 50 and 37% respectively [17]. A study done in Philippines found out that paying attention to the nutrition costs could reduce the catastrophic costs by 5% [18]. In Uganda, MDR-TB patients receive enablers in form of food and transport vouchers [19]. This survey however shows that despite this, these patients still incur high costs on nutrition and food. Potential solutions could include increasing nutritional and transport support for MDR-TB patients and possibly introducing similar support in the DS-TB patients.
The study found out DS-TB patients spent US$396 for the entire TB episode while DR-TB patients spent up to US$ 3722. Previous work done in Uganda on costs of TB treatment analyzed from health services, patients and community volunteers’ perspective showed the amount needed to successfully treat a new smear-positive TB patient was US$ 911.0 and US$ 391.0 using the hospital-based approach and community-based care approach respectively [20]. The costs incurred by MDR-TB patients in previous surveys have been found to be higher than for DS-TB patients. In Ghana, costs per DS-TB episode were US$429.6 while it was US$659.0 for MDR-TB patients [12]. The amount spent on TB treatment is high in a setting like Uganda where the minimum monthly wage is US$ 36 [21], and 21.4% of the population are below the poverty level [22]. This survey established that even before a TB diagnosis is made, 52% of the TB patients were already below the poverty level, with an additional 12.5% pushed below the poverty level while in TB care. These costs represent a large economic burden to the Ugandan TB affected households, who are financially compromised in the first place.
TB patients adopt several coping measures in a bid to cushion against the TB-related costs. Close to half (48.5%) of the patients had adopted at least one coping mechanism. TB patient cost studies done elsewhere found borrowing money and taking loans were the widely used coping strategies for TB patients [5, 23]. The survey revealed respondents in the lowest income quintiles (poorest, less poor and average) were more likely to take up loans and sell assets as opposed to using up their own savings. This is hardly surprising as this group of patients do not normally have a stable income source compared to individuals in the high-income quintiles and thus hardly have any savings to draw upon.
TB patients encounter several social consequences while in care. In this survey patients experience encountered food insecurity (49.7%), job loss (40.5%), interruption in schooling for children (11.8%) and social exclusion (53.7%). The proportion experiencing these consequences was higher than was found in similar surveys [14, 16], and this could be due to differences in the health care systems, sample sizes and economic profiles of the countries.
In this survey, patients/households belonging in the poorest expenditure quintile had higher odds of experiencing catastrophic costs. TB has often been known as a disease of the poor since the burden follows a strong socio-economic gradient, and also poor communities have been known to have high incidences [23, 24]. TB catastrophic costs are thus disproportionately experienced by individuals who are already at a higher risk of TB. Despite the high proportion of HIV/TB co-infected patients in the survey, HIV didn’t increase the odds of experiencing catastrophic costs. This possibly could be due to the implementation of the one stop shop model for TB/HIV services where TB and HIV services are offered to the clients at the same time and location.
The survey results provide a baseline upon which future catastrophic costs measurements could be compared and progress towards the high-level End TB Strategy target assessed. The survey results are disaggregated by TB resistance status (i.e., DR TB and MDR TB). However, the costs for the MDR TB patients need to be appreciated in context of the low number sampled. For example, the results showed costs incurred by the MDR TB patients for a TB episode are 10 times higher than for DS TB patients. It’s possible there is an over estimation for the MDR TB costs owing to the small number of MDR TB patients included in the survey. Despite this, we believe the costs would still be higher even with bigger numbers as has been seen in other studies that have sampled more MDR TB patients [14, 16, 25].
Based on the survey findings, we recommend a policy shift in order to be able to protect the TB patients against catastrophic costs. This could include operationalization of the national health/social insurance, strengthening and enforcement of legislation related to social protection and intersectoral collaborations as the effects span several sectors.
Limitations
The survey included a few MDR-TB patients. Subsequent surveys should purposely involve more MDR-TB patients in the sample. Patients also were asked costs previously incurred which might have led to a recall bias. Recall bias mainly affects cost estimates for the pre-treatment period and the approach to only interview persons in intensive phase about diagnostics costs was intended to minimize this type of bias. Also, most of the costs were estimated as the study was cross-sectional in nature. The survey also did not include costs after treatment as some of the direct and indirect costs of TB for the patients and the household can extend beyond the treatment period.