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News: The article discusses the lacunae in TB prevention policy formulation in India.
Facts:
- India home to the highest number of TB patients globally.
- In 2018, the health ministry’s Central Tuberculosis Division constituted a national expert group to provide technical expertise and guidance on TB management and shape national policy for TB control.
- But the panel did not have any patient representation on it.
- Patients have often been ignored and are not consulted on critical decision making regarding their health needs.
TB:
● Tuberculosis is an infectious disease that usually affects the lungs, though it can also affect other parts of the body.
● TB is an airborne pathogen, meaning that the bacteria that cause TB can spread through the air from person to person
● Its symptoms include cough, fever, night sweats, weight loss, etc.
● Without treatment, TB can spread to other parts of the body through the bloodstream and result into spinal pain and joint destruction, meningitis, impairment of liver’s waste filtration functions and heart diseases etc.
● DOTS or Directly Observed Treatment Short course is the internationally recommended strategy for TB control
● Tuberculosis is an infectious disease that usually affects the lungs, though it can also affect other parts of the body.
● TB is an airborne pathogen, meaning that the bacteria that cause TB can spread through the air from person to person
● Its symptoms include cough, fever, night sweats, weight loss, etc.
● Without treatment, TB can spread to other parts of the body through the bloodstream and result into spinal pain and joint destruction, meningitis, impairment of liver’s waste filtration functions and heart diseases etc.
● DOTS or Directly Observed Treatment Short course is the internationally recommended strategy for TB control
Need of the hour:
- Perspectives and experience of patients directly impacted by any policy need to be considered as patients are vital stakeholders and there is a wide gap between providers/ the state and patients.
- Patient involvement can help better address their needs, devise solutions which maximise patient adherence, and aid in communicating risks and implications of treatment choices.
- TB course and medicines have many side-effects, like deafness etc., which results into serious stigma post-treatment. Hence, decision makers need to heed to the demands of those impacted in the policy planning stage only.
- In countries like the UK the field of PPIE (patient and public involvement and engagement) is emerging. PPIE aims to offer people a say in their own care and treatment, and their involvement in decision-making around their care and treatment.
- Efforts similar to PPIE are now being replicated with contextual adaptation in countries like Sri Lanka.
- “Nothing about us, without us!” has been a demand and a call to action by the disability rights and other movements. This concept should be extended to patient involvement too.
- Involving patients proactively and purposively, apart from academics/ experts, policy makers, civil society representatives who take decisions on patient’s behalf, will lead to better and more equitable individual and population level outcomes.
