‘Making TB a notifiable disease will benefit patients’

Tuberculosis kills around 1,000 people each day in India and more than two million people are affected by the bacterial disease. This makes India a country with the highest TB burden. But these numbers only show TB cases reported in public health care facilities. Majority of TB cases are treated at private health care centres and never get recorded in government books. To get a real estimate of TB in the country, the Union ministry of health and family welfare has made it a mandatory notifiable disease. This means with immediate effect, all doctors treating TB anywhere in the country will have to get the case registered with the government. Madhukar Pai, associate professor at the Department of Epidemiology & Biostatistics, McGill University in Canada, has done extensive work on TB in India. He talks to Sonal Matharu on how the move will benefit TB patients and help government.

By Sonal Matharu
Published: Thursday 17 May 2012

Madhukar PaiThe government says notifying TB will help patients suffering from the disease get access to early and quality diagnosis and rational treatment. Will it actually help the patients and government?

Notification will allow the Revised National Tuberculosis Control Programme (RNTCP) to check if TB patients are actually getting the care they deserve. For example, if a TB patient is not completing full treatment, public health officials can follow-up and see how they can be brought back to complete the therapy. Also, children who are in contact with adults with TB need to be screened. This again will become possible if the programme is aware of who has TB.

In addition, mandatory notification will also allow expansion of free TB diagnostic and treatment services to poor patients in the private sector who often pay a lot of money, out-of-pocket. More importantly, notification allows the RNTCP to engage with the private sector. It is well-known that TB management practices in the private sector vary widely, often deviating from established standards. By getting the private sector to notify TB cases, there is now an opportunity to realign their TB care practices with international standards.

Does the health system in the country have infrastructure to provide treatment to all the TB patients who get registered?

No, RNTCP cannot possibly provide treatment to all TB patients in the country. TB patients can be treated in the private sector and they don't need to be referred to the public sector. Notification is not the same as referral. Private providers can notify cases to the RNTCP, but continue to provide care to their patients.

Then what is the purpose of notifying TB? Is it mere data collection?

Data collection would provide information on the magnitude of the problem. The private sector in India is estimated to manage over half of all TB patients in the country, and a majority of Indians initially seek medical care for all ailments in the private sector. So, if the private sector does not notify or report TB cases, one can never really know the true magnitude of TB problem in the country. Without situational awareness, it is impossible to control any disease epidemic. And without accurate surveillance data, we will never know if our control programmes are effective. This is clearly demonstrated in two infectious diseases–smallpox and polio. The smallpox eradication programme succeeded because of mass vaccination campaigns to reduce the incidence of smallpox in endemic areas, and surveillance systems which detected and reported cases early enough to permit the containment of outbreaks. The polio eradication programme in India is dependent on an extensive surveillance programme to identify and track every single case of polio in the country.

TB is strongly associated with HIV. What dangers can the HIV-positive patients be exposed to if TB is notifiable?

If data is handled with care, I am sure there will be no danger. A vast majority of TB patients in India do not have HIV infection. Even if they had HIV infection, treatment is available via NACO (National AIDS Control Organisation), and linkages should be made for such patients.

Is there any mechanism to protect TB patients and their families if they face discrimination because of the compulsory registration?

These are valid concerns and the RNTCP will need to address them. At this stage, I am not sure if any specific mechanism has been put in place for reducing stigma and discrimination. Cleary, data from the notification system will need to be carefully protected and kept secure.


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