7

Combating Drug-Resistant TB
Through Public–Private Collaboration
and Innovative Approaches

Key Messages

  • The majority of people seeking health care in India, including TB patients, use private providers, highlighting the importance of public–private collaboration in reaching drug-resistant TB patients.
  • Cell phones, GPS, electronic medical records, and other technology applications can help ensure that MDR TB patients are being treated effectively and can help engage the private sector in identifying people with drug-resistant TB.
  • TB and MDR TB programs that include culturally sensitive integration into poor communities can increase treatment success rates for TB and MDR TB and reduce the stigma associated with the disease.

Many pieces must come together to treat drug-resistant TB effectively in India. The majority of the Indian people receive their health care from private providers, who need to be integrated into systems of TB detection and treatment. Special outreach to poor and isolated communities is needed to reach patients who are struggling to support themselves and their families. The health care system must address the importance of finding and treating MDR TB patients. Several presenters at the workshop addressed these issues, speaking about Operation ASHA’s efforts to provide TB treatment to the many poor and underserved patients in India’s slums; ways to engage private-sector providers in broad public campaigns to reduce rates



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7 Combating Drug-Resistant TB Through Public–Private Collaboration and Innovative Approaches Key Messages • he majority of people seeking health care in India, including T TB patients, use private providers, highlighting the importance of public–private collaboration in reaching drug-resistant TB patients. • ell phones, GPS, electronic medical records, and other technol- C ogy applications can help ensure that MDR TB patients are being treated effectively and can help engage the private sector in iden- tifying people with drug-resistant TB. • B and MDR TB programs that include culturally sensitive integra- T tion into poor communities can increase treatment success rates for TB and MDR TB and reduce the stigma associated with the disease. Many pieces must come together to treat drug-resistant TB effectively in India. The majority of the Indian people receive their health care from private providers, who need to be integrated into systems of TB detection and treatment. Special outreach to poor and isolated communities is needed to reach patients who are struggling to support themselves and their fami- lies. The health care system must address the importance of finding and treating MDR TB patients. Several presenters at the workshop addressed these issues, speaking about Operation ASHA’s efforts to provide TB treat- ment to the many poor and underserved patients in India’s slums; ways to engage private-sector providers in broad public campaigns to reduce rates 89

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90 DRUG-RESISTANT TUBERCULOSIS IN INDIA of drug-resistant TB; and innovative ways of using cell phones, electronic medical records, and biometric devices to monitor interactions with TB patients and provide incentives for private health care providers to find and treat these patients. OPERATION ASHA: “GOING THE LAST MILE”1 Significant social stigma is attached to MDR TB, said Shelly Batra, President and Cofounder, Operation ASHA. It can cause the loss of a job, the loss of a home or family life, or the denial of education to children. In contrast with many other communicable diseases, MDR TB can be con- tracted just by being in the same room as a patient, and there is general awareness of this fact. Because of the stigma, many patients experience denial or hide their disease. Many patients also refuse to come forward for treatment, or if they do initiate treatment, they default. Because MDR TB treatment takes 2 years and requires continual management, keeping people in the system is a very big challenge, said Batra. Many people in India with MDR TB live in the slums and are highly mobile, returning to villages for events such as marriages or deaths. More- over, DOTS centers often are highly inaccessible. Many are open only during usual business hours—10:00 AM to 5:00 PM. If patients need to choose between food for their family and TB treatment, they will choose food. Some will go for treatment only until they are well enough to work. The poor in India and elsewhere in the developing world live in abso- lute poverty, noted Batra, defined by the World Bank as earning less than $1 a day. The round-trip fare to the DOTS center and back is 20 rupees. A man accompanied by an elderly mother or a baby, then, must pay 40 rupees, which is 80 percent of the day’s wages; therefore, if a man goes for TB treatment, there will be no wages for the day. Thus, said Batra, TB is not only a disease but also a socioeconomic crisis. In India, TB results in $300 million in lost wages every year (RNTCP Status Report, 2007). The indirect cost of TB to the Indian economy from lost productivity and absenteeism is $3 billion a year. Nearly one-third of 11,000 business leaders around the world expect TB to affect their busi- ness in the next 5 years, and 1 in 10 expect the effects to be serious (World Economic Forum, 2008). In the words of Jackson and colleagues (2006), “Ongoing poverty reduction programs must also include reducing TB.” Operation ASHA has engaged in mobilizing the whole community to deliver MDR TB treatment, working in close coordination with the govern- ment of India and following RNTCP guidelines. Its focus is on the “last 1 This section is based on the presentation of Shelly Batra, President and Cofounder, Operation ASHA.

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91 COMBATING DRUG-RESISTANT TB The DOTS model: Network of three types of facilities TB Hospitals: Adequate • Government facili es providing comprehensive diagnos cs and Hospital/ treatment recommenda on Warehouse • Warehouse for medicine supplies, DC provided free by government and donors DC DC Diagnostic Centers: Adequate • Sputum tests for ini al/rapid diagnosis DC • 5 DCs required for every hospital; typically present Hospital/ DC DC Warehouse Treatment Centers: Inadequate in slums • Local “last mile” centers, distribu ng medica on and ensuring compliance DC DC • 5 TCs required for every DC; currently, only 1-4, with limited hours of opera on DC • Scarcity of TCs results in high default rates, causing relapse and drug resistance FIGURE 7-1 The DOTS model in India includes a network of three types of facili- ties: TB hospitals, diagnostic centers, and treatment centers. The government model breaks down in the “last mile,” where treatment centers are located in the slums. NOTE: DC, diagnostic center; TC, treatment center. SOURCE: Batra, 2011. Figure 7-1 mile” to the slums, beyond TB hospitals and diagnostic centers (Figure 7-1). It has created a dense network of treatment centers for MDR TB near the entry point to the slums, at major bus stops, and near factories so that patients are no more than a 10-minute walk from the nearest center. These centers are in shops, temples, and social or religious organizations and are open for extended hours based on community needs, so that people can come before first prayer at a temple at 6:30 AM or after last prayer at 9:00 PM. The Operation ASHA centers leverage trusted community leaders such as priests and traditional healers to spread key messages to their commu- nity. At the same time, privacy is maintained. Treatment can be provided discreetly within a community-based model. Operation ASHA conducts rapid-response testing and education of the family members and neighbors of identified patients. It also performs active case finding in the community, which has resulted in much higher detection rates of sputum-positive cases. The project uses a corps of highly trained, well-compensated, full-time counselors to ensure compliance. If a patient misses a dose, a counselor goes to the patient’s home to bring him or her back into the system. The counselors receive a cash incentive for tracking missed doses and adminis-

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92 DRUG-RESISTANT TUBERCULOSIS IN INDIA tering them to the patient. The counselors also are responsible for linking patients with hospitals, taking them for sputum testing, and getting boxes of medicine allotted. Operation ASHA is undergoing an aggressive expansion to enroll 40,000 patients by 2014, up from 5,000 in 2010 and 10,000 in 2011. At that point, the population base served exclusively by the project will number 28 million, and the total population in the areas served will be 80 million. Operation ASHA’s cost for treating drug-susceptible TB is only $30 per patient, because the government provides the medicine and funds facilities. Of that $30, 85 percent goes to the core components of the program. Fur- thermore, beyond free medicines, diagnostics, and physician services, the government of India awards grants per patient 2 years after the completion of treatment, so each center can become self-sustaining after 2 years. For an MDR TB patient, the estimated cost of diagnostic tests, physi- cian services, and medicines is $2,340, according to Batra. Beyond those funds and resources invested by the government, Operation ASHA invests an additional $400 for counselors, administrative costs, and miscellaneous costs, for a total of $2,740. Batra explained that this is an extremely cost- effective investment, when the reduced health care and other costs to the economy and increased productivity for a patient who has been successfully treated are factored in. However, it can be difficult for Operation ASHA to secure $400 to treat an MDR TB patient, as opposed to $30 to treat a drug-susceptible patient. Operation ASHA started treating MDR TB patients in March 2009 in collaboration with the RNTCP. As of the date of the workshop, 17 patients had been enrolled, 2 of whom had completed treatment in March 2011. The challenges of treating MDR TB patients include difficulties with adherence given the long duration of therapy, intensive counseling, frequent blood and sputum tests, and daily injections for 6 months. The project has found that intensive counseling, combined with a patient-friendly approach, works best, said Batra. Batra observed that eliminating TB by 2050 will require a rate of decline of 16 percent each year, but the current rate of decline is only 1 percent. The involvement of governments, NGOs, the private sector, and communities will be essential to meet the challenge. Aggressive cost con- tainment requires the innovative use of technology; the use of low-cost, high-impact community-driven models; and public–private partnerships to deliver MDR TB treatment, said Batra. The government must encourage NGOs to deliver treatment, especially in challenging and difficult-to-reach areas such as urban slums, villages, and mountainous areas. For their part, NGOs must provide transparency and accountability, Batra stressed.

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93 COMBATING DRUG-RESISTANT TB ENGAGING THE PRIVATE SECTOR IN INDIA2 The private sector dominates health care in India, observed Puneet Dewan, Medical Officer, WHO Regional Office for Southeast Asia. In most parts of the country, the public sector is a minority provider of routine health care. Ambulatory care, human resources, and inpatient care all are dominated by the private sector, and TB care is no different. Two-thirds of India’s households rely on private-sector sources for health care (IIPS and Macro International, 2007). Even households in the lowest quintile of wealth use private caregivers 60 percent of the time when members are sick (IIPS and Macro International, 2007). A recent community-based survey of 30 districts in India found that nearly half of patients currently being treated for TB were receiving treatment outside DOTS/RNTCP sources and were not included in the national TB notification system (Satyanarayana et al., 2011). Of 6,771 TB patients included in the 2004 National Sample Survey, 53 percent of outpatients and 43 percent of inpatients reported the use of private health care facilities (Hazarika, 2011). There were no significant differences by age, urban versus rural residence, or education level. The most common reason cited for relying on private care was dis- satisfaction with public care, including long waiting times—not lack of access to public services. Opportunities to Improve Case Finding in Collaboration with Private Providers According to modeling done by Dye and Williams (2010), reducing treatment delays would have a greater effect on levels of new smear-positive TB cases than would improvements in treatment. Transmission is not driven by the lack of successful treatment of those who are identified as hav- ing the disease. Rather, transmission is driven by people in whom TB is not identified or who have not begun receiving the right treatment early enough. According to a recent set of surveys in Southeast Asia, for example, fewer than half of people who were bacteriologically active for TB were smear-positive in Cambodia, Vietnam, and Myanmar. Earlier case finding is particularly critical with MDR TB, said Dewan. If earlier case finding is linked with high-quality and rapid DST, diagnosis can occur earlier in the course of disease, and the subset of patients with drug-resistant TB can be started on the appropriate treatment sooner, reducing their opportunities for transmission. Tools that shorten the time to diagnosis can have a major effect on 2 This section is based on the presentation of Puneet Dewan, Medical Officer, WHO Regional Office for Southeast Asia.

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94 DRUG-RESISTANT TUBERCULOSIS IN INDIA incidence. Decentralizing diagnosis also can have an impact on transmission and incidence by reaching more people at an earlier stage in their disease. In a survey in Bangalore, for example, about 1,000 smear-positive TB patients were asked how many doctors they had visited before being diagnosed with and treated for TB in the public sector. The median number given was three, even though these were relatively easy cases to diagnose and treat. Furthermore, each successive doctor added about 2 weeks to the delay in diagnosis and treatment. The large volume of anti-TB drugs being disseminated by the private sector suggests that many people being treated for TB are not being noti- fied by the national program. The exact number of patients remains highly uncertain because of a lack of both diagnostic confirmation and standard- ization in treatment regimens in the private sector. Despite this uncertainty, the public sector lacks a system to track notifications of patients diagnosed and treated in the private sector. Public–private mix (PPM) initiatives in India and subsequent surveil- lance have shown that it is possible to reach patients through medical col- leges and large NGOs. But these efforts have had less success at reaching private providers. In India, efforts have focused on promoting referrals from the private sector for subsidized diagnosis and treatment. According to surveys, however, relatively few people being treated in public-sector facilities were referred from the private sector. Among the private providers involved with the national DOTS program, most simply provide patients with treatment and adherence information—relatively few diagnose and refer patients meaningfully. In some countries, private providers are required to notify public agen- cies about TB cases, with penalties for failure to comply. This is not the case in India, and according to Dewan, even if such laws existed, the coun- try currently lacks enforcement capacity. Beyond the current strategy of exhorting private providers to refer patients to the public sector, two basic approaches have been used to engage and accommodate the private sector in ways that acknowledge and deal with the reality of market forces. First, many countries have tried a collaborative model in which the public sector subsidizes treatments that are then provided by the private sector. In this way, the public sector can ensure that the quality of treatment meets mini- mum standards. In the second approach, the public sector contracts with private entities to identify and treat TB. Some countries seek to regulate private-sector treatment, require certification or accreditation of private- sector providers, or restrict access to quality anti-TB drugs in ways designed to shape private-sector access. Engaging with the private sector creates a channel for reaching and notifying patients. Furthermore, notification can occur earlier than if a patient comes to the public sector only after visiting one or more private providers.

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95 COMBATING DRUG-RESISTANT TB Dewan suggested that one of the most important effects of successful engagement of India’s private sector would be to reduce the inadvertent development of MDR TB driven by nonadherence to international stan- dards of TB care. Beyond MDR prevention, there are many opportunities for engaging the private sector in the direct response to MDR TB, especially with respect to providers who may likely see more drug-resistant TB, such as referral centers and chest physicians. In India, the availability and use of unaccredited DST and second-line anti-TB drugs are widespread. The provision of subsidized treatment for MDR TB is a powerful incentive, but it is not enough for the RNTCP simply to treat MDR TB. The disease must be detected and treated early to reduce transmission. Dewan suggested that the RNTCP consider the possibility of subsidizing private laboratories for early detection of patients seen by private providers for drug-susceptible and drug-resistant TB alike. Strengthening the quality of case management among private providers, including hospitals and medical colleges, also is critical. The cost difference between first-line (lower-cost) and second-line (higher-cost) anti-TB regimens may be a benefit in that patient demand for treatment of MDR TB with fully subsidized, quality-assured second-line drugs could help make inroads into improving private-sector case manage- ment for MDR TB. TECHNOLOGICAL INNOVATIONS IN TB CONTROL3 Using Technology to Involve the Private Sector in Surveillance Karachi, Pakistan, is a city of 18–20 million people comprising 18 administrative towns. The city had 63 TB diagnostic and treatment centers reporting to the National TB Program in 2010, 33 of which were operated by the government and 30 by private-sector partners. Among the many other health care providers in the city are more than 3,500 private general practitioner (GP) clinics and almost 400 hospitals where patients can be admitted overnight. These providers can be plotted on a map along with the TB patients being seen by the Indus Hospital TB Program (Figure 7-2), the latter being determined by a GPS coordinate for each patient registered at the hospital. This map illustrates that it is often much easier for a patient to walk to a nearby private clinic than to a TB center, which emphasizes the critical need to involve the private sector in TB case detection and management. 3 This section is based on the presentations of Shelly Batra, President and Cofounder, Operation ASHA, and Aamir Khan, Founder and Executive Director of Interactive Research and Development (IRD) and Director, Indus Hospital Research Center (by teleconference).

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96 DRUG-RESISTANT TUBERCULOSIS IN INDIA FIGURE 7-2 A map of part of Karachi pinpoints TB patients (small figures), pri- vate health care providers (small red squares), and hospitals (boxes containing a capital H). Figure 7-2 SOURCE: Khan, 2011. The map also highlights the benefits of using mobile technologies to capture data efficiently from both the public and the private sectors. Aamir Khan, Founder and Executive Director of Interactive Research and Development (IRD) and Director, Indus Hospital Research Center, described two open-source software systems being used and further devel- oped by IRD to gather data on the use of public and private providers in Karachi. The first, OpenXdata, uses cell phones to access information from a server while a health worker is visiting a patient’s home. A field worker or treatment provider can download data from the server and upload new data on the patient, including basic demographics, laboratory specimens collected, results, whether the patient has MDR TB, and whether the patient is describing any adverse events. This system is an effective and inexpensive tool for health care providers to use when seeing patients in their homes, said Khan. The second system, OpenMRS, is a medical records system for use on a desktop or laptop computer to access data on a patient from either inside or outside a clinic. Accessible data include bacteriology results, the patient’s treatment regimen, the patient’s adherence to the regimen, and when the patient was first registered. OpenMRS also provides alerts to support treat-

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97 COMBATING DRUG-RESISTANT TB ment. If a patient with MDR TB was resistant to isoniazid, for example, the system would warn the provider if isoniazid was prescribed. IRD informatics developers then combined these two systems with a Google Earth interface to visualize what it calls the “TB horizon” in the community. Clicking on any patient using a graphical interface extracts data in real time from the patient’s medical records. The data are sum- marized for treatment managers to help ensure that patients are receiving DOTS, that they are on the right regimen, and that they come in for their regular smear and culture tests. IRD received a TB REACH grant in 2010 for the use of mobile phones to provide conditional cash transfers to CHWs and GPs who identify sus- pected cases of TB, refer them for testing, and ensure that they receive treat- ment until cure or completion of the regimen is achieved. CHWs and GPs can earn up to 1,000 Pakistan rupees (PKR) for identifying a smear-positive TB case, with the amount of the incentive increasing for successful treat- ment. Monies are received via the recipients’ mobile devices through exist- ing mobile phone banking systems. Other CHWs perform contact tracing in households of known TB cases and receive similar financial incentives. The provision of conditional cash transfers via mobile phone resulted in a 100 percent increase in reporting of suspected TB cases to the Indus Hospital TB Program from the first quarter of 2010 to the first quarter of 2011. In addition, support from the Global Fund provides MDR TB patients with monthly food baskets, routine counseling, and other social supports, which serves as an incentive for these patients to complete their treatment. Future plans for the program call for cash transfers to patients based on their record of compliance with treatment. This program provides a valuable model for engaging the private sec- tor in the treatment of drug-susceptible TB and MDR TB, not just within Pakistan but globally, said Khan. Using Technological Innovations to Track Patients Batra described an intriguing, promising effort to use biometric devices for automated compliance tracking. Operation ASHA has deployed the devices at 17 South Delhi centers covering 940 patients and 35,000 trans- actions. Fingerprints are sent through cell phones to an online repository, whether at a center or a patient’s home. This system has resulted in a default rate of less than 0.5 percent and costs only $3 per patient. Batra explained that the cost is offset by the time a manager would otherwise have spent developing reports for the government and donors, which are now automated through the tracking system.

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98 DRUG-RESISTANT TUBERCULOSIS IN INDIA POTENTIAL INNOVATIONS AND ACTION ITEMS Through the presentations provided in this session and the subsequent discussions, individual workshop speakers and participants noted key inno- vations and action items. They include the following: • Operation ASHA has created a dense network of treatment centers for MDR TB, conveniently located in community centers that are open for extended hours and protect a patient’s privacy. • Community leaders are involved through the Operation ASHA network to increase active case finding and to maintain parallel records with those of the government. They are offered incentives for case detection and for keeping patients on treatment. • Cell phones and fingerprint technology are used in the Operation ASHA program in India and in the Indus Hospital TB Program in Karachi, Pakistan. This increases the efficiency of treatment track- ing and offers opportunities for improved results. • In these innovative programs, the community is utilized, and a divi- sion of labor and costs among NGOs, families, foundations, and public and private health care providers is devised to reach more patients and improve treatment.