Introduction

Of the 10.4 million new cases of TB in 2016, 2.8 million, more than a quarter, occurred in India. India accounted for 29% of global TB deaths, and 14% of the MDR-TB cases estimated during the same year [1]. TB patients in India often visit multiple providers before being diagnosed [2, 3] with a median of 55 days elapsing between the appearance of symptoms and diagnosis [4•]. Throughout the cascade of care (Fig. 1), many patients are lost from the system with only 53% of prevalent cases being registered for public sector treatment [5••]. Across practitioners, less than a quarter of unconfirmed TB patients are being correctly managed when they contact a health care provider [6••, 7•]. While other emerging economies like China have made impressive progress in curbing their TB epidemic, India has made only minimal gains [1]. In the new Sustainable Development Goals era, as the WHO calls to end TB by 2035 [8], this is the moment for India to fully commit to ending TB.

Fig. 1
figure 1

The cascade of care for all forms of tuberculosis in India’s Revised National Tuberculosis Control Program (RNTCP) in India, 2013. Error bars depict 95% confidence intervals. [from reference [5••], https://creativecommons.org/licenses/by/4.0/]

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This year, India’s Revised National Tuberculosis Control Program (RNTCP) released an ambitious National Strategic Plan (NSP) for Tuberculosis Elimination with the goal of eliminating TB in India by 2025 [9••]. The decline in TB deaths in India has recently begun to stagnate [10] and TB remains one of the leading causes of death among Indian adults during their most productive years [11]. The tools to turn the tide of the Indian TB epidemic exist, but the Indian TB community needs strong political will, higher investments in health in general and TB control, in particular, sustainable, scaled-up engagement of the private sector, improved quality of care, and interventions targeting the social determinants underlying the TB epidemic [12, 13].

Increase Political Will and Investments in Health

India’s current healthcare spending rests at 1.4% of GDP [14], substantially lower than most countries with comparable economies. In fact, all BRICS countries spend more on health than India. This underinvestment has left the public healthcare system struggling to meet the needs of the population, and has pushed people toward private health care that is often expensive and exploitative. Out of 188 countries, India ranks as the 127th in terms of progress toward meeting the health-related Sustainable Development Goals [15].

India’s NSP for TB elimination details the RNTCP’s intention to increase access to improved diagnostics and treatment support, engage with the private sector, and strengthen the healthcare system and TB surveillance. The total cost of this new effort is estimated at just under US$2.5 billion [9••]. The government has also announced a new National Health Policy which includes a gradual increase in healthcare spending to 2.5% of GDP, a level still lower than most other emerging economies [16] and much lower than the global average of 6%. To fully fund, the NSP would require a much more substantial increase in the government’s annual healthcare spending. Involvement of all key stakeholders, including patients, will be necessary to galvanize the political will needed to push this ambitious plan forward.

TB is a highly stigmatized disease in India, which may have contributed to its historical absence from national discourse [17]. Today, more and more patients are speaking out. Patient advocates call for an increased understanding of TB among the general population as well as higher quality and more accessible medical care and support. Groups like Bolo Didi seek to support patients through treatment and organize informal peer-support groups [18]. Amitabh Bachchan, a Bollywood megastar, has described his battle against TB and appeared in several TB campaigns [19].

While the platform for patient advocacy in India has expanded, raising the profile of TB, major roadblocks still exist. In January of 2017, an 18-year-old patient was forced to sue the government of India for access to bedaquiline, a new anti-TB drug that has provided a glimmer of hope for treating multi- and extensively drug-resistant TB [20]. Bedaquiline is still not routinely available to patients with drug resistance in India [21], despite evidence of its effectiveness [22]. Further, a recent modeling study suggests that withholding bedaquiline from first-line treatment for MDR-TB in India may result in worse patient and public health outcomes [23]. The development of new tools for tackling TB is meaningless if implementation is lacking [24].

The 2017 Global TB Report suggests that India’s TB budget has increased in the past few years (US$525 million is the current national TB budget, of which 74% is domestic funding) [1], and this is a promising trend that needs to continue, until the NSP is fully funded and executed.

Effectively Engage the Private Sector

The NSP acknowledges the importance of integrating India’s complex and weakly regulated private healthcare sector into the national TB program. Until recently, TB patients treated in the private sector were largely ignored as few private sector physicians were notifying these cases to the national TB program. A 2016 study of anti-TB drug sales in India allowed for the first estimation of the numbers of TB patients treated each year in India’s private sector [25••]. As a result, the annual TB burden estimate in India had to be upwardly revised by nearly a million patients [26]. Nearly half of India’s TB patients are treated in the private sector [27•], yet little data are available on outcomes of privately treated patients.

The few studies that investigate the quality of care in the private sector, such as simulated patient (mystery client) studies, have shown that the quality of care in the private sector is poor [6••, 7•]. Private providers have also demonstrated sub-optimal knowledge of TB, which can create diagnosis and treatment delays [27•, 28,29,30]. These delays, as well as non-standard treatment regimens, increase the risk of patient loss to follow-up and death. However, data on patient outcomes are largely unavailable as there is no national monitoring system for patient outcomes in the private sector.

A promising intervention to improve and integrate private physicians is Private Provider Interface Agencies (PPIAs). These organizations provide incentives and training to private physicians to encourage notification, the use of accurate diagnostics and the prescription of appropriate TB treatment. PPIAs also monitor and support patients during their treatment to promote adherence [31, 32]. In this way, private physicians can retain their patients and provide a higher quality of care while providing important monitoring data to the PPIA and the RNTCP. Additionally, programs like the Initiative for Promoting Affordable & Quality TB Tests (IPAQT) have made GeneXpert, a current gold standard diagnostic, as well as other WHO-endorsed TB tests, available at public sector pricing to private sector laboratories with the requirement that these savings be passed on to patients [33, 34••]. This serves to encourage the use of better TB diagnostics in the private sector where nucleic acid amplification tests were previously prohibitively expensive.

Improve Quality of Care

Globally, the TB community has moved its attention from the traditional focus of achieving coverage of treatment availability to ensuring that the now widely available treatment is of high quality. From simulated patient studies, we see that physicians and pharmacists are failing to recognize TB patients or to manage them appropriately [6••, 7•]. Cascade of care studies have shown that, at every step of care, patients are lost (Fig. 1). In India, only 39% of prevalent cases achieve recurrence-free survival [5••]. Care-seeking, diagnostic, and treatment delays prevent patients from being initiated on anti-TB therapy, without which they may die. Even when patients initiate treatment, poor adherence or loss to follow-up reduces treatment success rates. Additionally, without wide-spread drug sensitivity testing (DST), patients may not even receive effective medication for their TB.

India is one of the countries with the greatest MDR-TB burden, and rates of drug resistance are expected to rise; it has been estimated that MDR-TB will constitute 12.4% of all Indian incident TB cases by 2040 [35]. Widespread access to DST, including access to GeneXpert, can improve patient outcomes and has the potential to curb the MDR-TB epidemic [36], but only 30% of patients treated under the RNTCP received upfront DST in 2016 [9••].

The directly observed therapy, short course strategy (DOTS) has operated at scale for over a decade in India but quality improvement (QI) has not been routinely integrated into the system. To alter patient outcomes, the RNTCP will need to commit to ongoing assessments of gaps in the patient care cascade using an operational research approach [37]. The RNTCP must evaluate and promote adherence to diagnostic and treatment algorithms among its physicians. Simulated patients offer a window into the real care patients receive as they weave through the healthcare system, and this and other strategies should be implemented broadly to continuously monitor and improve the quality of care. Governments such as South Africa are now building QI into the foundations of their TB treatment programs, but India has not yet moved to systematically evaluate the quality of its TB services.

Address Underlying Social Determinants

Underlying the TB epidemic is a reality of poverty and poor overall health. Historically and across the globe, TB is associated with factors such as low socioeconomic status, malnutrition, tobacco smoke, indoor air pollution, and comorbid health conditions such as HIV and diabetes [38]. Eliminating TB will require a concerted effort to address these risk factors, and improving social determinants of health will bolster the health of the Indian population beyond the TB field as well.

Smoking

Smoking has long been associated with a greater risk of developing TB and suffering worse outcomes [39]. Similarly, TB is a leading cause of death among smokers [40]. According to the most recent estimates of tobacco smoking, 24% of men and 3% of women in India smoke [41]. It is estimated that more than 10% of TB cases in India are attributable to smoking [42]. The NSP recognizes smokers as a high-risk group for TB, and proposes assessing tobacco use in TB patients and linking users to national support programs.

Undernutrition

Undernourished populations have an increased risk of developing TB [43,44,45]. In India, undernutrition is nothing short of an epidemic itself. Recent State-level Disease Burden Initiative estimates from India show that child and maternal malnutrition are still leading risk factors for premature death and poor health, and that these rates are highest in the poorer states of north India [46••]. Across India, approximately 35% of the adult population aged 15–49 years is undernourished, and up to 55% of the annual incidence of TB is due to undernutrition [47]. Modeling suggests that nutritional interventions could avert 4.8 million cases and 1.6 million deaths over the next 20 years [48•]. Recognizing this reality, the NSP proposes nutritional assessment and counseling for all TB patients, and the RNTCP now provides guidance on patient nutrition [9••]. Unfortunately, India has made very little progress on the undernutrition-related Sustainable Development Goals [15]. The proposed interventions by the RNTCP are necessary, but due to the extent of undernutrition, widespread implementation will pose a challenge.

Diabetes

As India’s economy has grown, its population has begun the epidemiological transition from a health landscape dominated by communicable diseases to one where non-communicable diseases impact large segments of the population [4•, 6••]. Of particular relevance to the TB discussion is the rising rate of diabetes mellitus [49]. The national prevalence in India is approximately 7.3%, but in urban areas, it rises to 11.2% [50]. Diabetes is associated with an increased risk of active TB [51] as well as a greater risk of treatment failure, death, and relapse [52]. Among TB patients in India, diabetes prevalence has been reported between 15 and 25% [53,54,55]. Nearly 10% of TB cases in India are attributable to diabetes [42], but as diabetes prevalence is projected to increase by 67% by 2035 [56], the burden of TB-diabetes coinfection may increase in the coming years.

Stigma

The highly stigmatized nature of TB in India compounds its complex interactions with other social determinants. TB stigma can prevent patients from seeking care and reduce the support they receive from their families. Unlike the HIV field, the TB community has made little progress in reducing the stigma patients’ face [57]. As Daftary and colleagues argue, merely raising awareness about TB stigma is insufficient to mitigate stigma. The TB community needs consciousness raising, a form of activism where people with and affected by TB come together to share their experiences, identify common struggles and begin collectively organizing to change harmful practices [57]. Also, common TB policies and practices can be modified to reduce TB stigma, informed by lessons from HIV activism [57]. Efforts to better measure TB stigma and to incorporate its costs into modeling exercises are ongoing [58, 59]. TB stigma negatively correlates with TB knowledge [60] so education campaigns and promoting patient advocate platforms are critical.

Conclusion

The National Strategic Plan for TB Elimination shows that the Indian government and national TB program have stepped up their ambition and are aware of the steps necessary to curb the TB epidemic. The RNTCP recognizes the critical need to engage the private sector, and to assess and improve the quality of care that TB patients receive in every sector they receive it in. It also acknowledges that improvements to the overall quality of care and the underlying social determinants that leave patients vulnerable will ultimately reduce TB mortality, morbidity, and transmission. Additionally, there are early signs of increased funding for TB.

The Indian TB epidemic is large and complex but it is not insurmountable. With strong political leadership and commensurate funding, this could be the beginning of the end of the TB in India and the success of the global effort to end TB depends on it.