Critical to engage India’s vast private sector to effectively implement standards of TB care: Dr Sarabjit S Chadha

The government is aiming to eliminate tuberculosis from India by 2025, and for that it has already initiated several mechanisms. Under the guidance of Central Tuberculosis Division (CTD), Ministry of Health and Family Welfare (MoHFW), it has initiated the Joint Effort for Elimination of Tuberculosis (JEET) programme, which is supported by the Global Fund and implemented by the Foundation for Innovative New Diagnostics (FIND), William J Clinton Foundation (WCJF) and Centre for Health and Research and Innovation (CHRI). Dr Sarabjit S Chadha, Regional Technical Director, FIND talks about the JEET programme along with the mechanism in bringing patient care, awareness, support etc, to Usha Sharma

Give us the brief details about the JEET programme and its functioning mechanism?  

India has the highest burden of tuberculosis (TB) in the world, with an estimated 26.9 lakh cases in 2019. The country documented a record high notification of 24 lakh cases, an increase of over 12 per cent in 2018. Almost 90 per cent of these 24 lakh notifications were incident of TB cases (new and relapse), translating into a notification rate of approximately 159 cases/lakh against the estimated incidence rate of 199 cases/lakh- further closing the ‘missing cases’ gap by approximately 5.4 lakh cases.

The country has now embarked on an ambitious journey of eliminating TB by 2025. In order to achieve this vision and as stated in the National Strategic Plan (NSP) for TB elimination (2017-25), it is critical to engage India’s vast private sector to effectively implement the Standards of TB care (STCI). This is because more than 50 per cent of TB patients in India seek care in the private sector, and often, these patients are not notified to the government leading to ‘missing cases’.

Further, research shows that there are significant gaps across the patient care cascade in the private sector. These challenges include: under reporting, under-diagnosis, diagnostic delays, irrational and non-standardised treatment regimens, among others.

Therefore, a Joint Effort for Elimination of Tuberculosis (JEET) programme initiated under the guidance of Central Tuberculosis Division (CTD), Ministry of Health and Family Welfare (MoHFW), in close collaboration with state and district TB Offices, World Health Organisation (WHO) and other stakeholders. It aims to address these gaps through pan-India engagement with private sector, in line with the NSP mantra of “go where the patients go”. The project, supported by The Global Fund which is being implemented by the Foundation for Innovative New Diagnostics (FIND), William J Clinton Foundation (WCJF) and Centre for Health and Research and Innovation (CHRI).

The key objective is building upon the joint successes and learnings of partner organisations in the consortium, the project works closely with patients and all patient touch points- chemists/pharmacies, clinics, providers, hospitals, laboratories etc. Specifically, project JEET engages with the National TB Elimination Program (NTEP) network at national, state and district levels and operates through an intensive engagement model called Patient Provider Service Agency (PPSA). Under the project, private patients receive free, quality-assured diagnostic and treatment services to ensure cure while minimising out-of-pocket (OOP) expenses. The project provides patients with treatment adherence support by facilitating regular interaction between patients and providers; facilitates the provision of incentives by the NTEP to patients for nutritional support and to private providers for notification. Through these interventions, the project ensures access to diagnostics and treatment, notification, and improved treatment success rates.

So far, how many states across the country are part of the programme? In which states do you see a high prevalence of TB cases and what could be the reason for it? 

In 2019, project JEET facilitated over 0.45 million notifications across 480 districts in 24 states. This is nearly 34 per cent of the total private sector notifications in the country.  In 2019 over 50 per cent of the TB patients notified nationally were from the states of Uttar Pradesh (20 per cent), Maharashtra (9 per cent), Madhya Pradesh (8 per cent), Rajasthan (7 per cent) and Bihar (7 per cent).

The main reasons for a high prevalence of TB in these states include large population base, high population density, weak public health systems, and wide unregulated private sector, among others. Also to note here, is the difference in prevalence rates between urban and rural areas. Urban areas across the country have a higher prevalence of TB than the rural ones due to higher population density and poor living conditions (specifically in urban slums or any other area which is neither well lit nor ventilated). Living in such close proximity leads to increased TB transmission not to mention the spread of drug resistant TB (DR-TB) as well.

What are the gaps you have identified in the treatment of TB and how JEET programme?

Project JEET identified several challenges in India’s private sector patient care cascade:

Lack of access to quality diagnostic tests: It is apparent that high quality diagnostic tests like CBNAAT and cultures remain unaffordable. Further, there are only a limited number of private sector facilities that offer these accurate tests.

Lack of treatment compliance: TB treatment, especially treatment of DR-TB comes with severe side effects. These range from nausea, headache, and dizziness to anxiety, depression and sometimes even loss of hearing. Then there is the high pill burden and large pill size, inhibiting patients from completing their treatment. Interrupted, intermittent and incomplete treatment fuels the transmission of TB and worse DR-TB.

High dropout rates: Patients do not return to the treating physician making monitoring difficult. As if that wasn’t enough, follow up of migrant patients is even more difficult. In both scenarios, the treatment is not completed thereby increasing transmission and loss of life.

How is JEET bridging the gap and bringing efficiency in patient care?

Engagement of private providers: The project team networks with private sector providers by conducting training/sensitisation programmes for potential/engaged private practitioners with the objective of improved quality of TB care in the private sector. PPSA promotes quality and early diagnosis, use of rapid diagnostics and drug susceptibility testing (DST), TB notifications through NIKSHAY, treatment as per STCI and utilisation of available public sector services for the patients seeking care in the private sector.

Linkage to free diagnostics services by the programme: All presumptive TB cases identified by the engaged providers are linked to NTEP provided free, reliable and rapid TB diagnostic services. PPSA also promotes engagement of private laboratories to improve diagnostics and follow-up capacity in the district/city/town. Free diagnostic services provided by NTEP are extended through sample transport mechanism established under PPSA.

Linkage to free treatment services by the NTEP and support for treatment adherence: The project also leverages NTEP provided Fixed Dose Combinations (FDCs) in the private sector (as mentioned in the NSP) through engaged private sector practitioners and chemists. Provision for linking patients to public sector for initiation of first line TB drugs and treatment of DR-TB is also facilitated. In addition, treatment adherence support is provided to patients through a team of treatment coordinators (TCs) and the NTEP provided information and communication technology (ICT) enabled mechanism (call centre) for reminder SMSs and phone calls. The project also links eligible TB patients to applicable social support schemes, such as Nikshay Poshan Yojana, through Direct Benefit Transfer (DBT).

Incentives to patients and private providers: NTEP provisioned incentives as per the NSP are also being facilitated to the PPSA engaged private providers and patients, seeking care through them.

Is there any centralised platform dedicated to the data accumulation of TB patients? How does it benefit the patient as well as government?

Absolutely. The MoHFW, India is dedicated to eliminate TB by 2025 and accurate data holds the key in terms of surveillance, research and development as well as monitoring and evaluation. Remember, how TB was made a notifiable disease in early 2012? Under the notification policy, all private sector practitioners are required to compulsorily provide all suspected and/or diagnosed patient details to the public sector. In order to make the process simpler, the government launched NIKSHAY, a web based portal which allows notification of TB patients in confidentiality. It is developed and maintained by CTD in collaboration with the National Informatics Centre (NIC). Nikshay is used by the health functionaries at various levels across the country both in the public and private sectors, to register cases under their care, order various types of tests from various labs, record treatment details, monitor treatment adherence and to transfer cases between care providers. It also functions as the National TB Surveillance System and enables reporting of surveillance data to the Government of India.

What is the advance mechanism available in the market to diagnose TB cases and are they cost effective? And how is JEET helping the patient to have access to treatment?

There are a number of TB tests currently available for TB diagnosis in India. Of these the most reliable and accurate are the CBNAAT (GeneXpert) and the recently approved indigenously developed Truenat test. These tests are approved by the WHO and are available throughout India in public and private sector labs. Ideally, all presumptive TB patients should be tested using CBNAAT or Truenat, as they can diagnose both TB and drug resistance rapidly, ensuring early diagnosis and treatment, reduced transmission and favourable outcomes.

Through the PPSA model of implementation, project JEET links patients to free diagnosis and a treatment service offered by the NTEP and provides support for treatment adherence. The project facilitates provision of quality assured anti TB drugs (FDCs) in the private sector through engaged practitioners and chemists. Provision for linking patients to public sector for initiation of treatment of drug resistant TB is also facilitated. In addition, treatment adherence support is provided to patients through a team of treatment coordinators through an NTEP provided ICT enabled mechanism (call centre) for reminder SMSs, phone calls and home visits. The project is also linking eligible TB patients to applicable social support schemes.

Do you think there is a need of creating a robust awareness campaign for TB patients? And how it could be executed?

The NTEP and partners have already undertaken several efforts to create awareness about TB. For instance, the campaign TB Haarega Desh Jeetega, in collaboration with Bollywood celebrity Amitabh Bachchan garnered a lot of attention in the past few years. However, there is always room for improvement. NTEP’s efforts can further be strengthened by addressing issues of public awareness, prevention and community engagement, by:

Creating a comprehensive multimedia awareness campaign to ensure awareness on all kinds of TB, symptoms and the need to seek early diagnosis and treatment.

Communicate effectively to promote the awareness that TB affects us all and reduce stigma.

Engage local and national TB ambassadors to disseminate information on TB, through communication campaigns.

Strengthen community and institutional infection control measures to prevent the spread of TB, especially within high-burden contexts.

Create collaborations patient/survivor networks to develop policies and communication strategies.

Ensure mandatory counselling for TB affected individuals and families.

By when can we see India free from TB and for that what immediate steps need to be initiated both from government and medical practitioners?

As the government takes rapid steps to eliminate TB by 2025, action on the below recommendations is likely to enhance TB prevention and control in India. These suggestions are based on JEET’s experience of working with the public and private sectors.

a) Access to early and accurate diagnosis: Research shows that delayed and inaccurate diagnosis is one of the primary drivers of TB and DR-TB in India. While the government has taken multiple steps to ensure access to accurate diagnostics, the efforts can be further strengthened by:

Scaling up capacity for CBNAAT, Truenat and universal DST to ensure rapid detection of all kinds of TB

Creating mechanisms to ensure that anyone seeking care in either or both the public and private sectors can easily access accurate TB tests for free

b) Health information systems: CTD’s effort in the creation of NIKSHAY- a robust and comprehensive surveillance system to monitor TB is commendable. The following steps can be undertaken to further strengthen India’s health information system:

Expand Nikshay as a repository of confidential patient information and use it effectively to analyse disease trends and target interventions.

Strongly implement mandatory notification to receive accurate data on the number of TB cases and monitor treatment in the private sector.

c)  Engage the private sector: According to the NFHS, over 50 per cent of all of Indians seek care for illnesses including TB in the private sector. While the government has made an effort to innovatively engage with the private sector, in the form of public-private partnerships (PPP), there is an increased need to substantiate the efforts by:

Engaging the private sector through innovative incentive based schemes such as the PPSA. These need to be expanded strategically and new and more flexible schemes also need to be developed.

Expanding dissemination and trainings on STCI in India and stringent monitoring on the implementation of these standards.

Ensuring accurate diagnosis and appropriate treatment is available free to all patients in the private sector. This should be done on priority for DR-TB cases nationwide.

d) Prioritise changes in treatment of TB: The government already provides quality assured drugs for the entire treatment period for each patient through accredited public and private outlets/pharmacies. However, it continues to remain poorly implemented. This requires advocacy with private sector and awareness among patients.

e) Patient needs: For improved TB treatment outcomes, a balanced diet along with a strong psycho-social support is essential. In 2018, the Government of India (GoI) launched Nikshay Poshan Yojana, wherein Rs 500 is provided every month to each public sector TB patient to meet his/her nutritional needs. However, the scheme needs to be substantiated further to achieve a TB free India.

Provide economic support programmes, to support TB patients and their families during treatment period; avoid further impoverishment and; encourage family support.

Ensure that both public and private sectors have counsellors who will mandatorily identify and address risk factors that cause poor TB treatment outcomes e.g. under-nutrition, smoking, alcoholism and poor social support.

The public sector employs TB survivors as peer counsellors and DOTS providers to ensure empowered communities and patient support. However, there is a need to strictly implement this provision in the private sector as well for effective TB prevention and control.

Did you see any recorded changes in the TB cases due to the COVID-19 pandemic?

Unfortunately due to the pandemic, there has been an overall decline of 26 per cent in TB notifications from January to June 2020, as compared to 2019. The prevalence of TB among COVID-19 patients is estimated to be anywhere between be 0.37 – 4.47 per cent, in different studies. While, TB is associated with a 2.1-fold increased risk of severe COVID-19, the situation is exacerbated by co-infections and risk factors. TB patients, as of reduced immunity are susceptible to opportunistic infections such as diabetes, HIV etc. Further, poor and close knit living conditions increases their vulnerability to contracting both or either TB and/or COVID-19. Risk factors such as smoking, alcoholism and malnutrition too significantly contribute to susceptibility to both TB and/or COVID-19. Basically, any factor that influences one’s immunity is at a higher risk of contracting either or both of these infectious diseases, i.e., TB and COVID-19. In order to address this dual morbidity of TB and COVID-19, the following activities are being carried out by the NTEP:

1. Bi-directional TB-COVID screening
2. TB screening among patients with influenza like illnesses (ILI)
3. TB screening among patients with severe acute respiratory infections (SARI)