Partnering for impact in India: Bringing quality haemophilia care closer to home

Despite the ongoing COVID-19 pandemic, Dr Tulika Seth and the project team have built strong training networks and obtained equipment to improve care for bleeding disorders at seven centres since the India 13 project began in 2020.

India is the world’s second-most populous country and its seventh largest in terms of land mass. With a population of 1.38 billion, an estimated 138,000 people live with haemophilia in India, yet only around 15% have been diagnosed. This is due to a lack of diagnostic facilities and limited access to care, especially in rural areas.

That situation may soon be changing thanks to the latest project supported by the Novo Nordisk Haemophilia Foundation in India. Launched in 2020, the India 13 project aims to raise the quality of care across the country by strengthening seven centres to become national training and referral centres for bleeding disorders.

Shashank knows first-hand about the real impact of quality care. At 21 years of age, he lives in Bangalore where he is able to access care and pursue his education, but it wasn’t always that way. His haemophilia A remained undiagnosed and untreated for years. Shashank’s life changed when he began to receive quality care, not just for his physical symptoms but also for his mental health:

Shashank P. lives with haemophilia A with inhibitors in Bangalore, India.

“Lack of access to medical care for my bleeds at a young age led to deformities in my knee, ankle and elbow. What was worse, realising that I was different from other kids led me to distance myself and avoid social contact. I was slowly falling into depression when I was introduced to the Haemophilia Society, Bangalore Chapter, and the Bangalore Medical College and Research Institute (BMRCI) centre. Thanks to the care of Dr Meera and the staff, including multiple counselling sessions, I was able to discover my potential, gain self-esteem and confidence in my abilities.”

Dr Meera is a haematologist at the BMRCI centre in Bangalore, one of the seven national centres across the country participating in the NNHF-supported project carried out in partnership with the Ministry of Health, and the All India Institute of Medical Science (AIIMS) in New Delhi. The project started in early 2020, just before the COVID-19 pandemic began to wreak its devastating impact across India.

Dr Tulika Seth, head of haematology at AIIMS, has been instrumental in overseeing the project activities and coordinating among the different stakeholders. Dr Seth believes that teamwork has been the key to their success in challenging times:

“If I had to choose one word to describe this project, it would be partnership. In addition to equipping seven centres with the diagnostic and laboratory equipment needed to provide advanced diagnosis, we are training other centres so that they too are able to diagnose people with haemophilia. Training is provided remotely both by experts within the country and international experts from the UK and the US. So far, we’ve held virtual masterclasses for nurses, haematologists and physiotherapists; we plan to expand this to include lab technicians and dentists with in-person training sessions as soon as the COVID-19 situation allows.”

Dr Tulika Seth, talking to a patient at the All India Institute of Medical Science, New Dehli, in 2019.

All of this means that people with haemophilia in India, like Shashank, won’t have to travel such great distances in future for diagnosis and care. This will help prevent the disability, mental health issues and premature deaths associated with bleeding disorders.

“This project is desperately needed because, despite the size of India, not many government hospitals are able to provide quality haemophilia care. Among those that do, the standard of care can vary widely due to disparities among facilities and skills. Standardising care at these centres is the first step in our strategy of developing referral hospitals in each state and bleeding disorder centres in every district,” says Dr Seth.

Find out more about this project