Co-authored by: Dr Prakash Kudur, Dr Reynold Washington, Dr Ravi Prakash and Dr S Rajaram
Happy families are all alike, every unhappy family is unhappy in its own way. – Leo Tolstoy
When Tolstoy posited this statement in his famous novel Anna Karenina, he posited it in the context of marriage. That, for a marriage to succeed, it needs to succeed on many fronts. Tuberculosis (TB) patients are a lot like Tolstoy’s proverbial “unhappy families”. After all, suffering from Tuberculosis is a good enough reason for unhappiness. So when the patients are unique, the treatment regimen has to be unique too, customized to each one’s realities and needs. No wonder boiler-plate treatment protocols are not having the desired effect.
India contributes 27 per cent of the global TB burden, according to the World Health Organisation’s (WHO) Global TB Report 2017. The country recorded 423,000 TB deaths of a total 1.67 million globally in 2017. In cases of Multi-Drug Resistant (MDR) TB, the toll was 147,000, out of 601,000 worldwide. In HIV-TB co-morbidity cases, the global toll in 2017 was 10.3 lakhs whereas the Indian death toll was 87,000. The country had 2.79 million of the world’s 10.04 million people afflicted by TB. And India has over a million lost TB patients (persons suspected to be infected with TB but not part of the diagnostic, identification and treatment regimen yet).
Source: REUTERS/Jayanta Shaw
That Indian infection and death toll from TB are disproportionately higher than the global averages, is no surprise. But, that, India wants to eliminate TB by 2025, a good five years ahead of the global deadline is mighty ambitious! The WHO defines elimination as one case per 1 million persons. And as of 2017, we have, 211 per 100,000 TB incidences. In another six years, we need to achieve, 1 per 1000,000.
Enter the three southern states’ (Karnataka, Andhra Pradesh and Telangana) new approach to bump up the cure rates by actually responding to the living realities of patients and providing them with customized care and support. In partnership with Karnataka Health Promotion Trust, KHPT, a leading non-profit in health and equity space, in Asia and Africa, these three states are rewriting the rules of the game, and focusing on an important element in the treatment protocol. These states are coupling identification of vulnerability of patients based on their socio-economic conditions, and then responding to them via a differentiated care and support model. This is a recognition of the fundamental axiom that health is beyond just the medical and the clinical. Health is as much about the social, economic and inequalities.
As per the National TB Strategy (2017-2025), they are undertaking a comprehensive identification of the risks and needs of every TB patient. KHPT has formulated a tool called RANA (Risk And Needs Assessment) and administered it in Karnataka, Andhra Pradesh and Telangana. This is based on criteria like age, education, financial status, family status, migration status, the presence of other infections like HIV, the presence of Diabetes et al. Even the status of disclosure of TB to family and friends has been mapped. And linkage with other social protection programmes like food, nutrition, health insurance programmes are being mapped. Now Karnataka is scaling it up across the state with KHPT’s support and Andhra Pradesh and Telangana are adopting it too. While RANA is comprehensive, patient consent and confidentiality of the information is maintained at the highest level. It is not a voyeuristic exercise prying into the lives of some of the most vulnerable people.
Armed with this comprehensive information about every patient, a unique care and support regimen is designed for each patient. It is called the differentiated care and support model (DCM). KHPT works on a simple mantra, “Not all TB patients are same, neither do they have the same kind of TB, hence identifying the most vulnerable and prioritizing their treatment, care and support is necessary if TB-free India has to go beyond rhetoric.”
These states are identifying seven categories of TB patients and prioritize their treatment and support. Remember Anna Karenina? These are:
- Elderly patients who are 60 years and above
- Patients who are living alone
- Patients who had been treated previously but took medications irregularly
- Patients who are alcoholics
- Patients co-infected with HIV
- Patients suffering from Diabetes
- Patients with drug-resistant TB (DR TB)
A customized plan is drawn for each patient falling in any of the above seven categories, the community health worker, the TB Health Visitor (TB HV) are trained and the families are guided on the entire TB treatment protocol, nutrition support etc. For those living alone, friends and neighbours are mobilized and motivated for support. And this is important because TB is too debilitating a disease to conquer alone, by the patient, as Goodman Akonda has stated in the film Two Countries, Two Choices. Akonda is the first pre-extremely drug-resistant TB patient (a more virulent form of MDR TB) who got the wonder drugs Bedaquiline and Delamanid in South Africa, and was cured. He is one of the foremost TB survivors who has turned a TB advocate.
For those unwilling or scared to disclose their TB status, the TB helpline, Careline is marshalled, so regular phone calls could be made and the patients can be reminded to take their medicines and adhere to the course.
Efforts are made to link the poor and destitute to their social protection entitlements like the health insurance scheme, food and nutrition programmes, even open their bank account, so they can receive their subsidies via cash transfers i.e. Direct Benefit Transfer (DBT).
It is early days, but there are results to show. Around 46.8 percent of the patients in Karnataka, Andhra and Telangana are found to have at least one risk factor from the above seven. The recently adopted DCM model of care can achieve an overall success rate of around 92 per cent or more of cure rates (drugs, diagnostics, food and support staying constant).
Neighbouring state Kerala, which is already the front-runner, amongst Indian states, galloping towards TB elimination, has launched an unprecedented screening exercise. They have gone ahead and screened 2.5 million people (yes you heard that right, 2.5 million!), suspected to be vulnerable to TB. From slum dwellers to alcoholics, from those suffering from HIV co-infection to the destitute in shelter homes, Kerala has truly taken TB screening and diagnostic to everyone’s doorstep. It is a massive exercise and if they are able to identify every patient and do not lose one, then coupling RANA and differentiated care for the identified patients, would give Kerala a fighting chance to be actually TB-free.
Let us not send patients, after curing them, exactly to conditions which made them sick in the first place, the WHO Commission on Social Determinants of Health had warned evocatively, over a decade ago.
March 24th is World TB Day. A grim reminder that TB continues to be the biggest infectious disease killer in the world and India continues to have the highest TB burden. In the run-up to World TB Day, putting patients and their living realities “front and centre” in their treatment has become more important now than ever before. And other Indian states would do well to follow the example of the four Southern states.
About the authors: Ms. Swain is a senior international development expert, media critic and ethicist. She works on governance, social development and human rights in South Asia, East Africa and the UN. Dr Kudur, Dr Reynolds, Dr Prakash and Dr Rajaram are senior public health and data experts working with the Karnataka Health Promotion Trust. The authors can be reached at biraj_swain@hotmail.com.