Table 6 Policy options to mitigate (MDR)TB patients’ costs considered per country (expansion of Table 5 in manuscript)

Ensure that policy of free care for all (MDR) TB services is fully implemented. Agreements need to be in place so that presumed TB patients can make use of the necessary diagnostic tools for free.

Bring services closer to patients. Further decentralization should reduce patient expenditures on transport and patient time and should reduce detection and treatment delays, especially for MDR-TB patients. For areas where there is no public transport, transport for patients or home visits should be arranged. This includes improving downward referral from national or provincial MDR-TB treatment centers to local community health centers.

Detect and treat MDR-TB cases earlier. Especially detection of drug-resistant TB should reduce the time to appropriate treatment, and thus reduce direct and indirect treatment costs for patients, especially the amount of income lost due to inability to work during initial first-line drug treatment. Full implementation of new diagnostics such as Xpert MTB/RIF should reduce time to diagnosis and thus patient costs.

Raise the awareness of health workers. Provide education and training of primary level health workers to recognize suspects and ensure speedy diagnosis, and to follow up on cases and contact tracing.

Involve local NGO’s and civil society organizations to support patients and hereby improve (MDR) TB treatment adherence.

Reduce hospitalization. Kazakhstan has moved in recent years from full in-patient treatment to partial outpatient treatment, usually in the continuation phase. The country plans to move towards full outpatient care. This has the potential to greatly reduce indirect patient costs.

No unnecessary or substandard tests. Sometimes, tests are being prescribed by physicians that are not needed (e.g., X-ray for diagnosis of smear-positive TB patients). Private laboratories sometimes use substandard tests (e.g., IS6110 based PCR for detection of Mycobacterium tuberculosis) and serological tests. Such tests are not only unnecessary, but also may importantly increase the costs of (MDR) TB diagnosis.

Obligatory treatment for MDR-TB patients may be needed in parts of the country where a large proportion of MDR-TB patients refuses MDR-TB treatment, due to lack of knowledge or support, to protect the community against the spread of MDR-TB. MDR-TB patients may fear the costs and side effects related to MDR-TB treatment. Patient education, installation of patient organizations (as is starting up now in different hospitals), and provision of living allowances may help to remove some of these obstacles.

Include direct (transport, food support) costs in social support schemes provided through TB services. Such incentives and enablers should reduce direct costs associated with TB treatment and improve treatment adherence.

Include indirect (sick leave allowance) costs in social protection schemes. Review, standardize and expand current social protection mechanisms and schemes by the government. Social protection schemes, including temporary disability allowances, should be made available to those (MDR) TB patients who need it, from the moment they are diagnosed. Include social protection for (MDR) TB under disability policy strategies while ensuring that the protection is provided from the time of confirmed diagnosis to those who are at risk of becoming poor or not seeking or completing treatment. Professional guidance by health care workers or social workers for submitting applications for social support is needed for many patients. Possibilities for agreements on delaying or waiving payments (e.g. mortgage loans, school fees) are to be investigated.

Improve employment protection. Advocate for regulations and policies that mandate that both public and private employers pay employees (a portion of) their salary while they are unable to work. Also advocate for patients to be able to return to previous positions once they are fully cured and clinically fit to perform their assignments.

Reduce stigma and acceptance of outpatient treatment. Improve education to the public on TB and MDR-TB, e.g. through primary level services, in order to reduce stigma of (MDR) TB and reduce fear of transmission during outpatient treatment.

Increase re-socialization and employment possibilities. Develop mechanisms to involve socially vulnerable patients in different re-socialization activities provided e.g. through temporary, assisted living facilities. Develop mechanisms to involve patients in income generating activities and advocate government to support this, for example through microfinance.

Use social health insurance. Advocate with government to incorporate TB services in the future social health insurance system to provide sustainable financing. Also advocate for social protection to be included in the benefits package on the grounds that this will reduce severity of illness and transmission and thus save on treatment costs.

Consistency across social assistance programs and over time. The data collected on vouchers indicates that the amounts provided are very low compared with the patient costs and taking into account reductions in income. In addition there may be inconsistency in the amounts provided across facilities and over time. It is recommended that the government develops a standard.

Assure continuation of education. When rendered non-infectious, children and students need to be able to continue their education.

Involve local NGO’s and civil society organizations and empower community health workers in provision of (MDR) TB drugs to improve (MDR) TB treatment adherence, since this will increase the population that can be targeted.

Provide convenient lodging to those MDR-TB patients who cannot travel back and forth for receiving DOT. Since MDR-TB treatment roll out is still ongoing distances that MDR-TB patients have to travel for receiving DOT can be long in Indonesia and this may mean that patients need to move to a shelter close to the PMDT site. It is expected that the number of patients needing such housing will decrease with the roll out of the PMDT program.

Empower patient groups that can support MDR-TB patients in a practical way during MDR-TB treatment. Being a new development in Indonesia, MDR-TB peer educator groups are being set up by ex MDR-TB patients. MDR-TB patient support groups provide information to MDR-TB patients regarding side effects, reimbursements systems, etc., and thus serve as a valuable and easily accessible information point to MDR-TB patients.