The Centre for Health Education and Technologies (CHET) is a unique organization with the goal of bridging the gaps between elements of our health systems. We take a systems approach to healthcare and public health and work towards creating dialogues and conversations between these disparate elements. Our aim is to create human-centred health systems which will be responsive to the needs of diverse users.

We focus not just on clinical care aspects but also on public health policies, health communication, health rights, ethics, social and behavioural communication for positive health outcomes. We believe access, equity and justice in health is a basic human right and no individual should be denied of this right. We work towards health equity and justice to create a healthier community in mind and body

Projects

Rural Healthcare Ethnography

The primary goal of this rural healthcare ethnographic study (Feb-Nov 2009) was to provide a leading mobile technology company that funded this research with an in-depth understanding of the healthcare ecosystem and subsystems in rural and peri-urban villages in Bangalore Urban District, Karnataka with a focus on two diseases -namely Malaria and Tuberculosis. The choice of these two diseases of the poor, was useful to the client in understanding the processes and the flow of information under the RNTCP (Revised National TB Control Program) and NVBDCP (National Vector Borne Disease Control Program). Permission was obtained from the Health Commissioner of Karnataka to conduct the research at a Primary Health Care (PHC) centre, Community Health Centre (CHC), District Hospital, Tertiary Health Care centre, as well as the Taluk health Office (THO), District Malaria Office (DMO), District Health Office (DHO), and other NVDCP and RNTCP government offices, information centre, etc. in Bangalore City.

People

Advocacy

Thalassemia Drug

The drug Desferal is a life-saving drug used by people with Thalassemia. Thalassemia is a rare blood disorder caused by a mutation in the globin gene which affects haemoglobin production. People with thalassemia require monthly or bi-monthly blood transfusions along with regular iron chelation to remove excess iron caused by blood transfusions. Desferal is an injection used via an infusion pump which is critical in maintaining the health of people with thalassemia. This drug is produced and marketed in India by Novartis. Novartis has a captive market for Desferal in India.

Since almost a year, the thalassemia community has faced on-off shortage of this drug in the Novartis depots. No reason was given for the shortage and the short supply of this life saving drug was impacting the health of the community. In August 2016, the shortage was felt acutely in Bangalore, Mumbai, Pune, Ahmedabad, Delhi, Rajasthan, Odisha and Hyderabad. In this context, Prof. Vijay Chandru and Dr. Namitha Kumar stepped in to solve the problem at a larger level. The matter was brought up to the joint secretary of pharmaceuticals, union government by Prof. Chandru. At the state level, Dr. Kumar brought up the issue with the principal secretary, health and family welfare and state drug controller. 

This issue has since then received wide media attention after which Novartis stepped in to solve the problems with the stocks. The situation is yet to normalize with regular supply but a temporary intervention has been made to avoid health crises in the communities.

Publications

Rare Diseases and Orphan Drugs Policy for Karnataka Draft Framework (Feb 2016)

The Karnataka Vision Group for Biotechnology along with the state's health-related agencies recognizes the need to take a leadership position in the country for the welfare and improved health outcomes of all citizens affected by rare diseases. The group recognizes that the state has strengths in research capabilities and innovation through the application of genomic science and other biotechnologies for effecting substantive health access for rare disease affected communities. This policy has been drafted to be a forward looking and progressive plan for the state to implement through its institutions and partnerships with India's leading biotechnology cluster.

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Challenges and Opportunities for the Rare Diseases Community in India (June 2014)

The Organization for Rare Diseases India (ORDI) is positioned as an umbrella organization to address the collective needs of rare diseases community in India. ORDI is positioned as an organization to address advocacy and needs of rare disease patient communities and families. ORDI models itself on rare disease organizations in the US and EU to build on similar lines in India. This position paper outlines the landscape of rare diseases in India and the many challenges in addressing the issue.

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Misaligned Stakeholders and Health System Underperformance (Whitepaper)

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Rare Disease Dossier

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