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What does making TB a notifiable disease mean to us?
(CNS): On one hand the Indian Revised National TB Control Programme (RNTCP) needs to be complimented for making tuberculosis (TB) a notifiable disease, but on the other hand there are words of caution and oft-repeated list of actions RNTCP should consider to reach the unreached populations who need TB services. Probably in response to the alarm bells that went ringing when Mumbai reported ‘total drug-resistant TB cases’ the government has taken the step to make TB a notifiable disease.
Making TB a notifiable disease, will, perhaps, yield some positive outcomes – for instance, all private doctors or healthcare providers, laboratories and other caregivers will have to report every single case of TB to the government which will surely give a more real situation analysis of the burden of TB, where TB patients are getting treated and who is treating them (public or private healthcare centres), and other data that might have a positive outcome on public health.
According to an advisory of Medicins Sans Frontieres (MSF) Access Campaign, Dr Ashok Kumar, Director General, TB Division, Ministry of Health, Government of India, said in an IBN Live TV news: "It is essential to have compete information of all TB cases. Therefore, the healthcare providers shall notify every TB case to local authorities, that is, district health officers or Chief Medical Officers (CMOs) of the district and Municipal health officers of a municipal corporation, every month in a given format."
However this may also boomerang – especially for those populations who are currently unreached and might be forced to go underground for a range of reasons and refrain from accessing public or private healthcare system. This will clearly have a very profound negative impact on TB control and health system in general. According to the RNTCP, it had achieved a ‘new sputum positive TB case detection rate’ of more than 73% in 2010. This also implies that the RNTCP is not reaching to, at least, 27% of estimated number of people who need TB care services. Will making TB a notifiable disease really help us reach these unreached populations – is a big question to which we see no clear answer.
We also apprehend confidentiality related issues, and forcibly treating patients that are defaulting in confinement or isolation wards, among other concerns.
There is another brewing human rights question. With close to 100,000 people estimated to contract multidrug-resistant TB (MDR-TB) in India annually, the RNTCP has provided standard treatment to only 3610 patients since the inception of DOTS-Plus programme (source: RNTCP Report, December 2011). By its own admission, the RNTCP aims to deliver MDR-TB treatment to only about 30,000 patients by 2013 thus leaving out 70,000 who will still be in dire need of MDR-TB treatment, care and support services every year. Turning down, or not reaching out, or not being able to reach out, to the remaining 70,000 cases (as per current estimates) is, honestly, unacceptable in terms of public health as well as social justice – and – a looming human rights emergency.
When there will be no treatment provided by the RNTCP for every person who needs MDR-TB treatment, care and support, making every TB case notifiable, might have very far-reaching serious consequences for the patient, her family and TB control in general. Has the government considered the impact of a positive diagnosis of drug-resistant TB on the patient, her family and community, when the treatment may not be available for her? Presently MDR-TB treatment is available to less than 3% and 97% of those-in-need are denied treatment, care and support for MDR-TB. In communities that are identified to be at higher risk of TB such as injecting drug users, illegal migrants, people living with HIV (PLHIV), among others, making TB a notifiable disease might not bear positive public health results.
We cannot agree more with Leena Menghaney of MSF Access Campaign: “Civil society should call for an open discussion and debate with RNTCP on the benefits of the policy of compulsory notification of TB cases to the TB authorities. What happens if patients face stigma and discrimination if the policy is implemented wrongly? Will this not drive patients to seek care much later or even disappear? At a minimum the government should have had a dialogue on how to ensure that the policy will be implemented with a guarantee of medical confidentiality, psychosocial support and access to the most appropriate treatment as per WHO guidelines.”
Making TB a notifiable disease alone will not help unless accompanied by a very sensitive approach that ensures that no negative public health or social justice outcome is allowed to negate the gains made by TB control in the past years.
Genuinely engaging affected communities in TB programmes as equal partners with dignity, ensuring quality counseling in TB programmes, improving treatment and health literacy, addressing TB related stigma and discrimination that still is rampant in our society, thinking beyond DOTS when it comes to treatment provision, integrating TB programmes with other development programmes such as those on nutrition, sanitation, harm reduction, HIV, diabetes, among others, monitoring irrational use of drugs, strengthening health systems, and many such measures will yield more sustainable and positive public health and social justice outcomes. (CNS)
Shobha Shukla and Bobby Ramakant - CNS
(This article is jointly written by Shobha Shukla, Managing Editor, Citizen News Service (CNS) and Bobby Ramakant, Director (Policy and Programmes), CNS. Email: stopTB@citizen-news.org, website: www.citizen-news.org)
Thanks for bringing this issue to our attention.
I didn't know what a notifiable disease is so I googled- Wikipedia defines it - A notifiable disease is any disease that is required by law to be reported to government authorities. The collation of information allows the authorities to monitor the disease, and provides early warning of possible outbreaks. Many governments have enacted regulations for reporting of both human and animal (generally livestock) diseases. This usually happens during pandemics.
It worries me as TB can be very stigmatizing and drive TB patients underground and stop treatment or not report TB. Are there any examples where communities are responding to this issue? I will try to get inputs of team mates from the Constellation.