key: cord-0749821-ms8equmd authors: Thakur, Gargi; Thakur, Shalvi; Thakur, Harshad title: Status and Challenges for Tuberculosis control in India - Stakeholders' Perspective date: 2020-10-12 journal: Indian J Tuberc DOI: 10.1016/j.ijtb.2020.10.001 sha: e949f3a264d836d0b73e4117a5021eab266917e8 doc_id: 749821 cord_uid: ms8equmd BACKGROUND: Tuberculosis is one of the ten major causes of mortality worldwide. The trend of increasing TB cases and drug resistance in India is very disturbing. The objectives of the study were to study the perspectives and opinions of different stakeholders on the status, challenges and the ways to tackle the issues of TB in India. METHODS: The online survey was done for the data collection from national and international experts. The data collection took place during October 2017. We received 46 responses. RESULTS: The experts had varied answers as to the menace of TB in India, effect of TB on individuals, family and society, failure of government plans in India, TB awareness campaign and ways to create awareness. Everyone believed that urgent action needs to be taken against the disease like improving the healthcare infrastructure of the country (improving the quality and quantity of medical facilities and doctors) and creating awareness about the TB. CONCLUSION: Government of India is making lot of efforts to bring down the problems associated with TB through. In spite of this, there is a long way to go to achieve significant reduction in high incidence and prevalence of TB in India. Factors like lack of awareness and resources, poor infrastructure, increasing drug resistant cases, poor notification and overall negligence are the major challenges. If we eradicate poverty and undernourishment, educate the masses and eliminate the stigma attached with TB, we can hope for a disease free future. Tuberculosis (TB), one of the most ancient diseases of mankind, is one of the ten major causes of mortality worldwide 1 . It is an infectious disease caused by bacteria Mycobacterium tuberculosis. It usually affects lungs (Pulmonary TB) but can also affect other organs of the body. Pulmonary TB is an air borne disease. TB can be diagnosed by chest X-ray, sputum and other tests. Combinations of antibiotics are given for more than 6 months as a treatment. Vaccination with BCG (Bacille-Calmette-Guerin), early diagnosis and detection, proper and complete treatment, awareness, etc. can lower the burden of TB. Poor socioeconomic status and living conditions are considered as strong risk factors linked with Latent Tuberculosis Infection in addition to malnourishment 2 . BCG is the vaccine commonly available against TB. It does offer some protection against serious forms of TB in childhood but its protective effect wanes with age 1 . Latent TB is also becoming a major issue in ageing population. All countries and age groups are affected by TB but most cases (90%) in 2016 were in adults. Almost two-third was accounted for by eight developing countries with India contributing 27% of 10.4 million cases 3, 4 . In 2017, only 64% of the global estimated incident cases of TB were J o u r n a l P r e -p r o o f reported, the remaining 36% of 'missing' cases was undiagnosed, untreated or unreported. These 'missing TB cases' have generated much hype for the challenges they present in achieving the End TB Strategy 5 . Many people with TB (or TB symptoms) do not have access to adequate initial diagnosis. In many countries, TB diagnosis is still reliant on sputum microscopy, a test with known limitations. 6 . Wide spread misuse of anti-tubercular drugs has also resulted in emergence of drug resistant TB including Multi Drug Resistant TB (MDR-TB) and Extensively Drug Resistant TB (XDR-TB) globally. India has the highest incidence of new and MDR-TB cases in the world. It is difficult to diagnose MDR-TB and XDR-TB as compared to regular TB 7, 8 . TB treatment default, missing medical appointments for two consecutive months or more, is a serious problem not only for individuals but also for societies and health-care systems 9 . An increasing burden of MDR-TB patients, especially in the young population with increased risk of transmission posing a major challenge in achieving TB elimination targets 10 . In India, major challenges to control TB include poor primary health-care infrastructure in rural areas of many states, unregulated private health care, lack of political will and corrupt administration. WHO with its "STOP TB" strategy has given a vision to eliminate TB as a public health problem from the face of this earth by 2050 11 . Since 2000, there has seen the emergence of new diagnostics and drugs for TB. A new and potent drugs such as Bedaquiline, Delamanid, Teixobactin have been evolved which may serve as a nice step forward, with a better outcome 12 . However, these are yet to reach community, and access remains a major challenge for patients in low and middle income countries 13 . J o u r n a l P r e -p r o o f resources to rapidly decline TB in the country by 2030. This is in line with the Global End TB targets and Sustainable Development Goals to attain the vision of a TB free India. The goal is to achieve a rapid decline in burden of TB, morbidity and mortality while working towards elimination of TB in India by 2025 14 . India achieved the MDG targets of reducing the prevalence by half in 2015. In spite of this the trend of increasing TB cases and drug resistance in India is very disturbing. After collecting preliminary secondary information from the internet, journals, etc. about the disease, it was felt that there is a need to compile opinions of different stakeholders working in the healthcare field especially related to status and challenges of TB in India. The objectives of the study were to study the perspectives and opinions of different stakeholders on the status, challenges and the ways to tackle the issues of TB in India. We decided to contact the clinicians, policy implementers and academic researchers as they play a pivotal role in controlling and preventing the disease. These stakeholders are also pioneers in reducing TB burden in India and their opinions will be useful in developing effective strategies. A questionnaire for the survey was prepared and later on data was collected using available modern technology. The questionnaire was created on the online platform of www.surveymonkey.com. This online questionnaire made it easy for the survey to reach national and international experts. Social media (like email, Facebook, WhatsApp, etc) was utilized to send survey all across the world. The survey link (https://www.surveymonkey.com/r/H67S3YV) was sent to more than 1000 national as well as international experts and doctors working in diverse medical fields related to TB (academicians, researchers, clinicians, policymakers, implementers, etc). The online survey fulfilled the purpose of reaching out to many experts with variety of expertise like with the help of limited resources. The data collection took place during October 2017. The responses were collected over the period of next 7 to 10 days. A semi-structured interview schedule was used comprising nine questions and mainly focusing on the effects of TB on society, the opinions of experts regarding what they felt was lacking in the country's efforts to reduce TB prevalence and the ways of creating more and better awareness about TB. The consent of each respondent was taken and the confidentiality was maintained as we did not ask them for their personal information. The data was analyzed manually using MS Excel software. Data analysis largely followed the framework approach. The answers were entered in the worksheet. Data was coded, indexed and charted systematically to seek meaning from all of the data that was available. The data was categorized and sorted into patterns as the primary basis for organizing and reporting the study findings. We received 46 responses. The respondents consisted of people from all age groups ranging from 24 years to 68 years and belonged to categories like Clinicians, Policy makers / implementers, Academic Researchers and others. The Table 1 The experts say that each and every person in the country needs TB awareness and no section of the population must be exempted. But they feel that a special emphasis must be given on the poor and the marginalized sections of the society as these sections survive in poor and congested living conditions and the rate of malnutrition is high among them. The respondents feel that for the TB Awareness Campaign to reach every nook and corner of the country, innovative and creative methods have to be used so that the campaign catches everyone's attention. Use of mass media and social media will help in reaching the whole country. The use of local language for promoting the campaign will help in reaching out to the remotest places of India. The Awareness Campaign needs to be promoted by a celebrity or a famous personality so that people respond to the campaign. Also, awareness workshops should be held in schools and colleges so that the young generation is well informed about the disease. As one respondent mentioned, "The government should start an educational series on TB along the lines of "Mann ki Baat" by the Prime Minister of India." The additional efforts required to reduce the menace of TB include improving the overall scenario of public and primary healthcare in India. Universal access to healthcare and treating MDR-TB efficiently can substantially reduce the prevalence of TB. Improving the general health facilities, improved standard of living conditions, proper nutrition are some of the ways to tackle this deadly disease. Access to free or cheaper drugs and treatment, usage of quicker and more accurate diagnosis technology, involving private sector in the management of the TB Program will help to improve the existing infrastructure and healthcare services. These are some of the measures which will help tackle the problem of TB in the long run. Finally, all the experts believe that urgent action needs to be taken against the disease. Improving Majority of TB cases of resource-poor settings experience food insecurity, which impacts treatment adherence and outcomes. Additional food or cash assistance for this subgroup might improve food insecurity and thereby nutritional status 17 . But again, this is a temporary measure. The root causes of TB, like poverty, poor socio-economic conditions, and improper hygienic practices are still neglected. Most of the developed countries have eliminated diseases like TB before the advent of anti-tubercular drugs through socio-economic improvement. India is earmarking funding for prevention and control of TB, but it is still mainly for diagnosis and treatment and not for primary prevention. A significant proportion of the general population has incomplete knowledge on the routes of the spread of TB infection. Social stigma, such as reluctance to disclose about a family member being infected with the disease to others, also remains high. Imminent need for appropriate policy mechanisms for involving the private sector and raising consciousness through suitable advocacy measures is re-emphasized 18 . Quality of TB care is suboptimal and must urgently be addressed; merely focusing on coverage of TB services is no longer sufficient. While the world awaits revolutionary vaccines, drugs and diagnostics, programmatic data indicate that much can be done to accelerate the decline of TB 5 . Efforts are also being made to understand the genetic/molecular basis of target drug delivery and mechanisms of drug resistance 19 . TB during childhood is also quite under diagnosed and under reported in India. Increased detection of childhood TB cases is essential to control TB in general population 20 Successful control of TB globally will depend on strengthening TB control programs, wider access to rapid diagnosis and provision of effective treatment. Therefore, political and fund provider commitment is essential to curb the spread of TB 7 . There is a pressing need for systematic monitoring of ongoing TB treatment in the private sector: both to cast light on the true scale of the problem, and to help monitor the progress of interventions currently being planned to address this problem 23 . While transformative tools are being developed, high-burden countries like India will need to improve the efficiency of their health care delivery systems and ensure better uptake of new technologies. National TB programs must scale up the best diagnostics currently available, and use implementation science to get the maximum impact 6 . It has been shown that Active Case Finding (ACF) as compared to Passive case finding significantly averts catastrophic costs due to TB among patients. ACF as a strategy could ensure financial protection J o u r n a l P r e -p r o o f of TB patients and limit their risk of poverty 24 . In addition, TB elimination efforts need to focus on all forms of TB, including Extra Pulmonary TB, leaving no one behind, in order to realise the dream of ending TB 25 . The End TB Strategy by WHO envisions a world free of tuberculosis by 2035. This requires reducing the global tuberculosis incidence from >125 cases per lakh people to <10 cases per lakh people within the next 15 years, which is quite a herculean task. Expanding testing and treatment of tuberculosis infection is critical to achieving this goal. India will require cost-effective and sustainable interventions aimed at tuberculosis 26 . The WHO End TB Strategy also calls for a global reduction in the case fatality ratio below 5%. India accounts for a third of global TB deaths. Case fatality is a critical measure of the quality of TB care. Increased high-quality reporting on patient outcomes will help improve the evidence base on this topic 27 . The foundation of end TB strategy includes integrated patient centric care and prevention, bold policies, supportive statement, intensified research and innovation which requires engaging a wide range of collaborators across government, communities and private sector 28 . India needs to sustain the existing DOTS based program while introducing new components including services to address TB/HIV, treatment for MDR-TB, strengthening laboratory services and integrating TB services in both public and private healthcare sectors. Figure 1 J o u r n a l P r e -p r o o f mortality is concerned. The incidence is quite high but it is only the tip of the iceberg. There are many missed cases either due to non-reporting by private sector or due to misdiagnosis. The next issue is inadequate and improper treatment of identified cases leading to increasing burden of drug resistant TB. Availability and affordability of sound diagnostic technology which helps in early diagnosis of TB cases (both non DR-TB and DR-TB cases) is missing from many parts of country. TB has a tremendous effect at individual, family and community level. This way it even affects the economy of a country. Also it is still neglected as India is more concentrating towards other conditions like Non Communicable Diseases and other emerging health issues. Government of India is making lot of efforts to bring down the problems associated with TB through revised plans and their implementation across the country. In spite of this, there is a long way to go to achieve significant reduction in high incidence and prevalence of TB in India. Factors like lack of awareness and resources, poor infrastructure, increasing drug resistant cases (MDR TB and XDR TB), poor notification and overall negligence are the major challenges. Contagious disease like TB can victimize anyone. Even vaccinations do little to reduce its impact. If we eradicate poverty and undernourishment, educate the masses and eliminate the stigma attached with TB, we can hope for a disease free future. The current Coronavirus pandemic in 2020 has also given us excellent opportunity to create awareness about TB in the community at various levels. Tuberculosis: Current Status, Diagnosis, Treatment and Development of Novel Vaccines Impact of socioeconomic status and living condition on latent tuberculosis diagnosis among the tribal population of Melghat: A cohort study India's plan to eliminate tuberculosis by 2025: converting rhetoric into reality Geneva: World Health Organization Tuberculosis: treatment failure, or failure to treat? Lessons from India and South Africa Tuberculosis Diagnostics: State of the Art and Future Directions Drug resistant tuberculosis: a diagnostic challenge Drug Resistance in TB Control -A Global & Indian Situation Trends & treatment outcomes of multidrug-resistant tuberculosis in Delhi, India (2009-2014): A retrospective record-based study Tuberculosis: current situation, challenges and overview of its control programs in India Combating Tuberculosis Infection: A Forbidding Challenge Tuberculosis innovations mean little if they cannot save lives The National Strategic Plan for Tuberculosis Step Toward ending Ttuberculosis by 2025 Recent updates on drug resistance in Mycobacterium tuberculosis Diagnosis and management of latent tuberculosis infection in Asia: Review of current status and challenges Household food insecurity among patients with pulmonary tuberculosis and its associated factors in South India: a cross-sectional analysis Self-reported tuberculosis in India: evidence from NFHS-4 Development of New Therapeutics to Meet the Current Challenge of Drug Resistant Tuberculosis Characteristics of childhood tuberculosis patients registered under RNTCP in Varanasi National workshop on public private participation (PPP) for TB control in India--a brief review Private sector involvement envisaged in the National Strategic Plan for Tuberculosis Elimination 2017-2025: Can Tuberculosis Health Action Learning Initiative model act as a road map? Tuberculosis treatment in the private healthcare sector in India: an analysis of recent trends and volumes using drug sales data Catastrophic costs due to tuberculosis in South India: comparison between active and passive case finding Does Drug-Resistant Extrapulmonary Tuberculosis Hinder TB Elimination Plans? A Case from Delhi, India Tuberculosis preventive treatment: the next chapter of tuberculosis elimination in India Tuberculosis case fatality in India: a systematic review and meta-analysis Source of funding -None J o u r n a l P r e -p r o o f