5.2 Costs faced by TB patients and their households
The World Health Organization (WHO) End TB Strategy targets for reductions in tuberculosis (TB) disease burden (incidence and mortality) can only be achieved if everyone with TB is able to access diagnosis and treatment. This is not possible if high costs are a major barrier to health care for people with TB. For this reason, the End TB Strategy includes the target that no TB patients and their households face catastrophic total costs because of TB disease. Total costs are defined as the sum of direct medical expenditures, direct nonmedical expenditures and indirect costs (e.g. income losses).
WHO has established standard methods for conducting a national survey to assess the direct and indirect costs incurred by people with TB and their households (TB patient cost surveys) (1). Since 2015, there has been substantial progress in the planning and implementation of national TB patient cost surveys (Fig. 5.2.1). In 2023, preparations for a repeat survey were initiated in two countries: Myanmar and Viet Nam.
By August 2023, 31 countries had completed a survey, including 18 of the 30 high TB burden countries (Fig. 5.2.2). Nine surveys were completed in the period 2020–2022, during the COVID-19 pandemic.
In the 29 surveys for which results have been reported, the percentage of TB patients and their households that experienced catastrophic total costs (defined as >20% of annual household expenditure or income) ranged from 13% (95% confidence interval [CI]: 10–17%) in El Salvador to 92% (95% CI: 86–97%) in Solomon Islands (Fig. 5.2.3). The pooled average for all 29 countries, weighted for each country’s number of notified cases, was 49% (95% CI: 37–61%). Among 25 countries that reported disaggregated data, the percentage facing catastrophic total costs was much higher for people with drug-resistant TB, with a pooled average of 83% (95% CI: 75–90%).
Fig. 5.2.3 Estimates of the percentage of TB patients and their households facing catastrophic total costs,a national surveys completed 2015–2022
b Disaggregated estimates for TB (first-line treatment) and drug-resistant TB were available for only 25 countries. The calculation of confidence intervals for Mali and Uganda did not account for sampling design.
Source: WHO Global Tuberculosis Programme
The distribution of costs faced by TB patients and their households varied among countries (Fig. 5.2.4). However, it was evident that – despite the widespread norm of “free TB care” policies – TB-affected households still faced direct medical costs. Such costs accounted for a sizeable proportion (20% or more) of total costs in two countries (Mali and Kenya). Minimizing direct medical costs borne by TB patients should be a high priority for national TB programmes (NTPs) and ministries of health.
The surveys also showed that actions are needed to eliminate direct nonmedical costs and to reduce indirect costs. The combined cost of transportation, food, nutritional supplements and other nonmedical expenditures (“direct nonmedical costs”) accounted for a substantial share (50% or more) of total costs in 10 countries, including Colombia, El Salvador, Fiji, Kenya, Mali, Namibia, Solomon Islands, Timor-Leste, Uganda and the United Republic of Tanzania.
Indirect costs associated with loss of employment or time lost while seeking or staying in care accounted for the largest single share of total costs in 13 countries: Brazil, Burkina Faso, Indonesia, Lesotho, Mongolia, Myanmar, Niger, Nigeria, Papua New Guinea, South Africa, Viet Nam, Zambia and Zimbabwe.
All cost categories are influenced by the model of TB care; for example, to what extent there is reliance on hospitalization or outpatient care, the frequency with which attendance at health facilities is requested and the level to which services are decentralized to bring the services close to the community. They are also influenced by ease of access to the health facilities used to provide care.
Fig. 5.2.4 Distribution of costs faced by TB patients and their households in national surveysa completed 2015–2022
Source: WHO Global Tuberculosis Programme
In 2023, results from national surveys were used to produce model-based estimates of the percentage of TB patients and their households facing catastrophic total costs in all 135 low and middle-income countries (LMICs) (2). The model-based estimate for all LMICs was 55% (95% CI: 47–63%). Among the six WHO regions, the highest percentage was in the African Region: 68% (95% CI: 59–76%) (Fig. 5.2.5).
Social protection is required to mitigate or eliminate direct nonmedical costs and indirect costs. In 2023, 21 of the 30 high TB burden countries reported having a national policy specifically related to social protection for people with TB, up from 17 in 2022 (Table 5.2.1). Free access to TB treatment is the most common measure (all of the 21 countries with a policy related to social protection). In 19 countries, at least one other form of social protection was in place in 2023; examples included cash transfers, enablers to adhere to treatment, and support to help with food security.
| National policy specifically providing social protection services to people with TB | Type of social protection measures provided to people with TB | ||||||
|---|---|---|---|---|---|---|---|
| Free access to TB diagnosis | Free access to TB treatment | Enablers to adhere to TB treatment | Cash transfersa | Measures to ensure food security | Targeting | ||
| Angola | 1 | 1 | 1 | 0 | 0 | 0 | |
| Bangladesh | 1 | 1 | 1 | 1 | 0 | 0 | |
| Brazil | 1 | 1 | 1 | 0 | 1 | 1 | Individuals considered highly vulnerable |
| Central African Republic | 0 | ||||||
| China | 1 | 1 | 1 | 0 | 1 | 1 | |
| Democratic Republic of the Congo | 0 | ||||||
| Congo | 1 | 1 | 1 | 1 | 0 | 0 | |
| Ethiopia | 1 | 0 | 1 | 1 | 0 | 1 | |
| Gabon | 1 | 1 | 1 | 0 | 0 | 0 | |
| Indonesia | 1 | 1 | 1 | 1 | 1 | 0 | Cash transfers for people with drug-resistant TB |
| India | 1 | 1 | 1 | 1 | 1 | 1 | |
| Kenya | 1 | 1 | 1 | 1 | 1 | 1 | |
| Liberia | 1 | 1 | 1 | 1 | 3 | 0 | |
| Lesotho | 0 | ||||||
| Myanmar | 0 | ||||||
| Mongolia | 1 | 1 | 1 | 1 | 0 | 1 | |
| Mozambique | 1 | 1 | 1 | 1 | 0 | 0 | |
| Namibia | 1 | 1 | 1 | 1 | 0 | 1 | |
| Nigeria | 0 | ||||||
| Pakistan | 1 | 1 | 1 | 1 | 1 | 0 | |
| Philippines | 1 | 1 | 1 | 1 | 0 | 0 | |
| Papua New Guinea | 0 | ||||||
| Democratic People’s Republic of Korea | 1 | 1 | 1 | 1 | 0 | 1 | |
| Sierra Leone | |||||||
| Thailand | 1 | 1 | 1 | 1 | 1 | 1 | |
| United Republic of Tanzania | 1 | 1 | 1 | 1 | 1 | 1 | |
| Uganda | 0 | ||||||
| Viet Nam | 0 | ||||||
| South Africa | 1 | 1 | 1 | 0 | 1 | 1 | |
| Zambia | 1 | 1 | 1 | 1 | 1 | 1 | Food and transportion supports for people with drug-resistant TB |
Source: WHO Global Tuberculosis Programme
In addition to protection from catastrophic total costs, people with TB need to be protected from stigma and discrimination. Most of the 30 high TB burden countries have policies in place to protect people diagnosed with TB from losing their employment, to protect them from housing eviction, to protect their parental rights over children, to protect them from any compulsory isolation and to ensure that they do not face restrictions in accessing congregate settings (Table 5.2.2). However, there are also several high TB burden countries where such protective policies are not yet in place. This includes four countries where there are no policies to protect rights in any these five domains: the Democratic Republic of the Congo, Myanmar, Namibia and Viet Nam.
| A policy or specific measure is in place | A policy or specific measure is not in place | A policy or specific measure has not been identified | |
|---|---|---|---|
| Employment: protection from dismissal | 19 countries (Bangladesh, Brazil, the Central African Republic, China, Gabon, Indonesia, India, Kenya, Mongolia, Mozambique, Pakistan, the Philippines, Papua New Guinea, the Democratic People’s Republic of Korea, Thailand, the United Republic of Tanzania, Uganda, South Africa and Zambia) | 6 countries (the Democratic Republic of the Congo, Congo, Myanmar, Namibia, Nigeria and Viet Nam) | 4 countries (Angola, Ethiopia, Liberia and Lesotho) |
| Housing: protection from eviction | 18 countries (Angola, Bangladesh, Brazil, the Central African Republic, China, Gabon, Indonesia, Kenya, Liberia, Mongolia, Mozambique, Pakistan, Papua New Guinea, the Democratic People’s Republic of Korea, Thailand, the United Republic of Tanzania, Uganda and Zambia) | 8 countries (the Democratic Republic of the Congo, Congo, Myanmar, Namibia, Nigeria, the Philippines, Viet Nam and South Africa) | 3 countries (Ethiopia, India and Lesotho) |
| Parenting: parental rights protected | 16 countries (Bangladesh, Brazil, the Central African Republic, China, Gabon, India, Kenya, Liberia, Mongolia, Mozambique, Pakistan, Papua New Guinea, the Democratic People’s Republic of Korea, Thailand, the United Republic of Tanzania and Uganda) | 9 countries (the Democratic Republic of the Congo, Congo, Indonesia, Myanmar, Namibia, Nigeria, the Philippines, Viet Nam and South Africa) | 4 countries (Angola, Ethiopia, Lesotho and Zambia) |
| Freedom of movementᵇ: no restriction on access to congregate settings | 21 countries (Angola, Bangladesh, Brazil, the Central African Republic, China, Gabon, Indonesia, India, Kenya, Liberia, Mongolia, Mozambique, Nigeria, Pakistan, Papua New Guinea, the Democratic People’s Republic of Korea, Thailand, the United Republic of Tanzania, Uganda, South Africa and Zambia) | 5 countries (the Democratic Republic of the Congo, Myanmar, Namibia, the Philippines and Viet Nam) | 2 countries (Ethiopia and Lesotho) |
| Freedom of association: no compulsory isolation | 21 countries (Angola, Bangladesh, Brazil, the Central African Republic, China, Gabon, Indonesia, India, Kenya, Liberia, Mongolia, Mozambique, Nigeria, Pakistan, Papua New Guinea, the Democratic People’s Republic of Korea, Thailand, the United Republic of Tanzania, Uganda, South Africa and Zambia) | 5 countries (the Democratic Republic of the Congo, Myanmar, Namibia, the Philippines and Viet Nam) | 2 countries (Ethiopia and Lesotho) |
Comprehensive documentation about the 20 national surveys of costs faced by TB patients and their households that were completed between 2015 and 2021, which used WHO-recommended methods and for which results have been shared with WHO, is available in a book published by WHO in 2023 (3). This includes cross-cutting chapters on methods, results, policy implications and future direction, and profiles for each national survey in a standardized format. The coverage of social protection measures for TB-affected households in these 20 countries is also summarized in Part II of the publication.
Further details about model-based estimates of the percentage of TB patients and their households facing catastrophic total costs in LMICs, including country specific details and results disaggregated by drug resistance status and household income quintile, are available in a journal article (2). The country-specific estimates for LMICs that have not yet implemented a national survey are also provided in the Global tuberculosis report app.
Further details about policies to protect people from stigma and discrimination can be found in the WHO global TB database.
References
Tuberculosis patient cost surveys: a handbook. Geneva: World Health Organization; 2017 (https://iris.who.int/handle/10665/259701).
Portnoy A, Yamanaka T, Nguhiu P, Nishikiori N, Baena IG, Floyd K et al. Costs incurred by people receiving TB treatment in low- and middle-income countries: a meta-regression analysis. Lancet Glob Health. 2023;11:e1640-e7 (https://pubmed.ncbi.nlm.nih.gov/37734806/).
National surveys of costs faced by TB patients and their households, 2015–2021. Geneva: World Health Organization; 2022 (https://iris.who.int/handle/10665/366277).