SURVIVOR
Recommendations

SURVIVOR Recommendations

How to Comprehensively Address India’s TB Crisis

As the government takes steps to address the TB crisis in India we, numerous survivors, have put together our thoughts on critical areas, which need immediate attention and action for fighting TB in India. Government action on these issues is not only likely to enhance TB control but also assist in in reaching its commitment of Universal Access. These suggestions are based on our experiences of surviving TB and working with numerous TB affected individuals who have reached out to us for support.

Ensure Public Awareness among Communities to Ensure Prevention and Reduce Stigma: India needs to urgently address issues of public awareness, prevention, community engagement and stigma reduction. Survivors and TB affected communities remain passive recipients of care often fearful of accessing treatment or speaking out about TB due to widespread discrimination. Our fight to combat TB must begin with empowering individuals and communities with information and reducing stigma. This can be done if the government:

  • Creates a comprehensive multi-media awareness campaign to ensure awareness of all kinds of TB, their symptoms and the need for early diagnosis and treatment.

  • Focus on creating awareness of Extra Pulmonary TB which remains neglected and those affected by it suffer from delayed diagnosis and treatment.

  • Through effective communication work to ensure awareness that TB affects us all and to reduce stigma around all forms of TB

  • Engage and work with TB ambassadors and survivors at the local and national level through public campaigns to inform and empower thereby creating awareness and reducing stigma

  • Strengthen community and institutional infection control measures to act as a strong preventive tool especially within high-burden settings.

  • Create collaborations with all stakeholders especially patient groups and in developing policy and communication strategies.

  • Ensure mandatory counseling for TB affected individuals and families to ensure prevention and family support for TB affected.

Early and Accurate Diagnosis for Every Indian: Extensive research has shown that delayed and inaccurate diagnosis is one for the primary drivers of India’s TB epidemic and its growing menace of drug resistance. To achieve the goal of universal access to quality diagnosis India must:

  • Substitute sputum smear microscopy with WHO-endorsed, highly sensitive molecular diagnostics by 2017, while simultaneously scaling up capacity for liquid cultures and DST.

  • Scale-up implementation of new diagnostic tests, and offers universal drug-susceptibility testing (DST) to all TB patients to ensure rapid detection of all forms of TB.

  • Create mechanisms to ensure every Indian seeking care in both the public and private sectors can easily access accurate TB tests for free whenever needed.  

  • Prevents the use or entry of sub-optimal tests by making sure that all new diagnostics for TB undergo rigorous validation before approval.

Stem the crisis of DR TB: India is believed to have close to 100,000 cases of Multi Drug Resistant (MDR) TB making it a frightening epidemic.  This will likely undo the progress made by India's DOTS program. To address this crisis, the government must:

  • Provide every TB patients with an upfront Drug Susceptibility Test, to rapidly identify MDR and more severe forms of DR-TB.

  • Instead of giving a standardized regimen we must individualize treatment regimens, choosing only drugs to which we know TB bacteria are sensitive to.

  • Consider expanding access to the two new drugs Bedaqualine and Delamanid particularly to patients in the private sector with ease to ensure that no patients go without treatment.

Understand what Patients Need: Nutrition and Support: TB cannot be addressed until we understand what patients need to fight this disease. For improved outcomes of TB treatment better nutrition and constant counseling is essential. To address these issues India should:

  • Provide food/nutrition supplements for all TB patients with low body weight/below poverty line – this will act as an adherence enabler as well as address nutritional issues.

  • Create economic support programs– to support TB patients and their families during treatment period, to avoid further impoverishment but also encourage family support. This has been attempted in Cuba and shown remarkable results in ensuring adherence and reducing catastrophic health expenses.

  • Ensure that both in the public and private sectors have counselors who will mandatorily identify and address risk factors that cause poor outcomes eg. under nutrition, smoking, alcoholism and poor social support and help patients cope with them.

  • Employ TB survivors as peer counselors and DOTS providers to ensure that patients building empowered communities and providing patient support.

Health information systems: India cannot defeat TB unless it creates a robust comprehensive surveillance system for TB needs to be rapidly developed throughout the country to aid planning and action.

  • The government needs to expand and revitalize the e-system, Nikshay as a repository of confidential patient information and use it effectively to analyze disease trends and target interventions.

  • Implement mandatory notification to understand the accurate number of TB cases in the country and also effectively monitor their treatment in the private sector.

Engage the Private sector: According to the NFHS, close 70% of all of Indian’s seek care for illnesses including TB in the private sector. Evidence has shown that inappropriate treatment in this sector also leads to increased DR TB. There are several key initiatives that can be taken to innovatively engage and partner with the private sector to control TB. The government should

  • Engage the private sector through innovative incentive based schemes such the Public Private Interface Agencies being implemented in Mumbai and Patna.

  • Expand dissemination and trainings on the Standards of TB Care in India and continuous monitoring on the following of these standards.

  • Ensure that 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.

Prioritize Changes in Treatment of TB: Treatment practices for TB in India continue to be disjointed. There needs to be alignment between international practices and the public and private sectors. Some key changes in this regard can be:

  • Provide quality assured drugs for entire treatment period for each patient through accredited public and private outlets/pharmacies        

  • Ensure reskilling and training of health workers to shift from the intermittent regimen to the daily regimen under direct observation to have uniformity of care across all healthcare sectors. This will help ensure universal access   and also prevent further drug resistance.

  • Provide drug susceptibility testing guided treatment as a norm to all suspected drug resistant TB cases to ensure appropriate treatment and prevent MDR TB cases from becoming XDR TB.


Extensive research has shown that delayed and inaccurate diagnosis is one for the primary drivers of India’s TB epidemic and its growing menace of drug resistance."

All these recommendations have been derived from our respective experiences. We urge the government to take action on the aforementioned issues and in turn ensure effective TB prevention and control in India.

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