Abstract: Tuberculosis (TB) is a major public health problem. An emerging menace in India is drug resistant forms of TB. In order to ensure proper TB diagnosis and case management, reduce TB transmission and address the problems of emergence of spread of Drug Resistant-TB, it is essential to have complete information of all TB cases. Therefore, Govt. of India declared Tuberculosis a notifiable disease on 7th May 2012. This paper highlights the fact that notification of TB in the absence of regulation of diagnostic practices, rational use of anti-TB medicines and availability of diagnostic and treatment facilities for drug-resistant TB will pose more problems rather than provide solutions to this problem.
Key Words: Tuberculosis; Drug resistance; Notification
Tuberculosis is a major public health problem in India. Early diagnosis and complete treatment of TB is the corner-stone of TB prevention and control strategy.1 Notification is one of the earliest measures in public health practice. It is especially employed for communicable and other acute diseases where public health action may be triggered by an individual case, or where an individual case may be the indication that a disease outbreak is occurring.2 Notification, if implemented effectively, informs policy makers and programme managers about the burden of disease in the community which helps in planning, implementing and evaluating health promotion and disease intervention programmes. However, notification is also criticized as it affects the privacy and confidentiality of patients, and disregards their autonomy and human rights.3
Our country has a huge private sector and it is growing at enormous pace. Private sector predominates in health care and TB treatment. Extremely large quantities of anti-TB drugs are sold in the private sector. Non standardized prescribing practices among some of the private providers with inappropriate and inadequate regimens and unsupervised treatment continues without supporting patient for ensuring treatment adherence and completion with unrestricted access to first and second line TB drugs including without prescription. This frequently leads to treatment interruptions and subsequent drug resistance.1
Recently researchers at the Hinduja Hospital in Mumbai documented the presence of Totally Drug Resistant strain of TB (TDR-TB) in India for the first time in the December 21, 2011. Though the Union ministry of health has denied the presence of TDR-TB reported in Mumbai, there is nothing extra-ordinary that these cases have come up.
India has become the third country in the world to identify patients with TDR-TB. Earlier, TDR-TB cases were first identified in 15 patients in Iran in 2006 and then in Iraq in 2007.The authors write, “Only 5 of 106 private practitioners practising in a crowded area called Dharavi could prescribe a correct prescription for a hypothetical patient with MDR tuberculosis. The majority of prescriptions were inappropriate and would only have served to further amplify resistance, converting MDR tuberculosis to XDR tuberculosis and TDR tuberculosis.
In order to ensure proper TB diagnosis and case management, reduce TB transmission and address the problems of emergence of spread of Drug Resistant-TB, it is essential to have complete information of all TB cases. Therefore, Govt. of India declared Tuberculosis a notifiable disease on 7th May 2012. All public and private health providers shall notify TB cases diagnosed and/or treated by them to the nodal officers for TB notification.4
Issues regarding Notification
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. 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. 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 ethical issues regarding HIV notification.
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). Turning down, or not reaching out, or not being able to reach out, to the remaining cases 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.5
Challenges to implementation
Declaring a condition or disease notifiable is only the first step; more important is effective implementation of the notification. There is enough evidence of ineffective implementation of existing regulations in India.6 If a few private providers (both practitioners and laboratories) comply with notification and others do not, patients may opt for a facility which does not notify as they may fear the dangers of notification i.e. breach of privacy with consequent stigma and discrimination. This might shunt patients from a facility that notifies to a facility that does not notify; the latter is not likely to meet any adequate standards of care. The possibility of notification leading to such an adverse outcome cannot be ruled out. To summarize 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. There is a need to work on rational use of anti-TB drugs as well as involvement and regulation of the private sector. Such measures could then, create some benefits in terms of protection of the health of patients and their contacts. Notification would be justified if such a multipronged approach could save some lives.
References:
Key Words: Tuberculosis; Drug resistance; Notification
Tuberculosis is a major public health problem in India. Early diagnosis and complete treatment of TB is the corner-stone of TB prevention and control strategy.1 Notification is one of the earliest measures in public health practice. It is especially employed for communicable and other acute diseases where public health action may be triggered by an individual case, or where an individual case may be the indication that a disease outbreak is occurring.2 Notification, if implemented effectively, informs policy makers and programme managers about the burden of disease in the community which helps in planning, implementing and evaluating health promotion and disease intervention programmes. However, notification is also criticized as it affects the privacy and confidentiality of patients, and disregards their autonomy and human rights.3
Our country has a huge private sector and it is growing at enormous pace. Private sector predominates in health care and TB treatment. Extremely large quantities of anti-TB drugs are sold in the private sector. Non standardized prescribing practices among some of the private providers with inappropriate and inadequate regimens and unsupervised treatment continues without supporting patient for ensuring treatment adherence and completion with unrestricted access to first and second line TB drugs including without prescription. This frequently leads to treatment interruptions and subsequent drug resistance.1
Recently researchers at the Hinduja Hospital in Mumbai documented the presence of Totally Drug Resistant strain of TB (TDR-TB) in India for the first time in the December 21, 2011. Though the Union ministry of health has denied the presence of TDR-TB reported in Mumbai, there is nothing extra-ordinary that these cases have come up.
India has become the third country in the world to identify patients with TDR-TB. Earlier, TDR-TB cases were first identified in 15 patients in Iran in 2006 and then in Iraq in 2007.The authors write, “Only 5 of 106 private practitioners practising in a crowded area called Dharavi could prescribe a correct prescription for a hypothetical patient with MDR tuberculosis. The majority of prescriptions were inappropriate and would only have served to further amplify resistance, converting MDR tuberculosis to XDR tuberculosis and TDR tuberculosis.
In order to ensure proper TB diagnosis and case management, reduce TB transmission and address the problems of emergence of spread of Drug Resistant-TB, it is essential to have complete information of all TB cases. Therefore, Govt. of India declared Tuberculosis a notifiable disease on 7th May 2012. All public and private health providers shall notify TB cases diagnosed and/or treated by them to the nodal officers for TB notification.4
Issues regarding Notification
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. 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. 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 ethical issues regarding HIV notification.
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). Turning down, or not reaching out, or not being able to reach out, to the remaining cases 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.5
Challenges to implementation
Declaring a condition or disease notifiable is only the first step; more important is effective implementation of the notification. There is enough evidence of ineffective implementation of existing regulations in India.6 If a few private providers (both practitioners and laboratories) comply with notification and others do not, patients may opt for a facility which does not notify as they may fear the dangers of notification i.e. breach of privacy with consequent stigma and discrimination. This might shunt patients from a facility that notifies to a facility that does not notify; the latter is not likely to meet any adequate standards of care. The possibility of notification leading to such an adverse outcome cannot be ruled out. To summarize 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. There is a need to work on rational use of anti-TB drugs as well as involvement and regulation of the private sector. Such measures could then, create some benefits in terms of protection of the health of patients and their contacts. Notification would be justified if such a multipronged approach could save some lives.
References: