A national multi-stakeholder partnership for TB care and control is shaping up in India. Last week, representatives from a range of TB stakeholders participated in a day-long meeting at LRS Institute of Tuberculosis and Respiratory Diseases in New Delhi. The meeting was facilitated by the International Union Against Tuberculosis and Lung Disease (IUATLD, The Union)’s India Resource Center.
India ranks first in the list of 22 TB high burden countries globally with about 1/5th of the world’s TB cases. According to the World Health Organization (WHO)’s Anti Tuberculosis Drug Resistance in the World report (2008), India and China together have more than 50% of the world’s drug-resistant TB cases. India also figures high-up on the list of high-burden multi-drug resistant TB (MDR-TB) countries in the world.
However all is not that bleak – India has certainly made major strides in TB care and control, testing more than 40 million people for TB, rolling out anti-TB treatment to more than 9 million sputum-positive patients since 1997, every month more than 100,000 patients are put on Directly-Observed Treatment Short-course (DOTS) treatment, with more than 85% cure rate in sputum-positive patients, under the Revised National TB control Programme (RNTCP). However it is due to poor programme performance of DOTS that drug-resistant TB has been on an alarming rise.
“Partnerships in TB care and control is not new to India” said Dr LS Chauhan, Deputy Director General (TB), Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India. “Since 1995, India has forged partnerships with different sectors to improve TB programme performances” added Dr Chauhan.
“Despite of the involvement of more than 2,500 NGOs, private practitioners, 260 medical colleges and 110 corporate sector hospitals in the RNTCP, the contribution of the TB programme is not at the desired level” said Dr Chauhan, clearly articulating the need that a lot more needs to be done to improve TB programme performance in India.
“There is a need now for close coordination and clear communication while working together to face the challenge of including those who are currently outside the reach of the public health system” said Dr Chauhan. “There is not enough coordination between different TB stakeholders at the district or state level, and not regular coordination at the national level” remarked Dr Chauhan.
Dr Chauhan also said that “the RNTCP programme cannot document every best practice or challenges faced at the grassroots in TB care and control, so other people need to take leadership and come forward”. These voices of the frontline workers in TB care and control need to be well documented and ‘heard’ in order to inform the policy makers for a desired change to improve TB programme performance.
Recent reports have identified programmatic challenges impeding TB responses in India that include limited community awareness, sub-optimal community participation and sense of ownership, emerging challenges of TB-HIV co-infection and drug-resistant-TB management and limited access to quality TB care for the hard to reach, marginalized and vulnerable populations.
“8 million new TB cases diagnosed every year and two TB deaths take place every 3 minutes in India” said Professor (Dr) D Behera, Director, LRS Institute of Tuberculosis and Respiratory Diseases, New Delhi. “Just providing anti-TB treatment is not sufficient, treatment is interrupted due to poverty, unemployment, etc” added Dr Behera.
“At USAID, partnerships are the way to do business. Partnerships enhance efficiency and effectiveness, rational division of labour, maximize synergy” said Robin Mardeusz from the United States Agency for International Development (USAID). Robin highlighted one of the major benefits of the partnerships in providing multi-action innovative solutions. USAID has supported the secretariat of the national partnership for TB care and control to be hosted by The Union through a World Vision grant.
Another civil society partnership on TB which exists in India since March 2007 to complement India’s RNTCP is the NGO TB Consortium which includes eight major civil society organizations contributing to TB care and control: Adventist Development Relief Agency (ADRA), Damien Foundation India Trust (DFIT), German Leprosy and TB Relief Association (GLRA) , LEPRA Society , PATH India , Project Concern International (PCI) India , TB Alert India and World Vision India.
One clear mandate of an effective and genuine partnership for TB care and control should be to help strengthen mechanisms for equitable access to information and meaningful participation, particularly of those undergoing anti-TB treatment, or those who have successfully completed their anti-TB treatment or those who are at increased risk of TB including people living with HIV (PLHIV). Without documenting these voices of the affected communities so that the best practices and challenges both inform the national TB programmes so as to improve the programme performances, India will fail to achieve the targets for TB prevention, treatment and care.
Another major mandate of such a partnership should be to radically scale up communications and advocacy to implement the Patients’ Charter for Tuberculosis Care, so that affected communities can use the Patients’ Charter to raise awareness and consciousness about the rights and responsibilities of people with TB, to strive towards achieving International Standards for Tuberculosis Care across the country.
How complementing will be the NGO TB Consortium to the National Partnership for TB Care and Control, is yet to be seen. Also how we build or help strengthen high quality and reliable platforms for information exchange, genuine dialogue and advocacy on TB/HIV issues, keeping the voices of the affected communities at the centre of such discourses, will be a daunting challenge.
May be it is time to step out of our organizational entities and join hands for better synergy to bring the affected communities in the centre of TB/HIV response and help India achieve the TB prevention, treatment and care targets it has set out for.