Creating systemic change in India

In the world’s 2nd most populated country, many voices need to be heard on the journey to improved and standardised haemophilia care. As a prominent voice in this field, in 2019 Hemophilia Federation India (HFI) embarked on an ambitious project to unify their efforts to improve haemophilia care, with a focus on advocacy.

This marked that HFI was advocating in a structured way, with master trainers from each region cascading advocacy knowledge and tools whilst also gaining insights regarding care gaps and policy needs from their chapters. With health a state subject in India, a key outcome of these efforts were policy goals adapted to both national and state-level advocacy needs.

HFI Master trainers delivered a series of advocacy training workshops in their regions, including this one in the South

With their advocacy strategy in place, the HFI sought to lay out the practical steps needed to mobilise the organisation and achieve their policy goals. To support this, a core advocacy group was formed in 2022 to participate in the NNHF Global Advocacy Programme[N(H1]  alongside five other countries, where they were able to refine their advocacy road map.

Throughout all of this, the HFI has made great strides in their journey to achieve their goal of ‘One Country, One Treatment’. On a national level, HFI directly engaged with 17 parliamentarians to sensitise them to haemophilia needs, and now expect the formation of a parliamentary committee to help address these needs.

Every region of the country has seen systemic change since the project began in 2019, ranging from a 40% increase in budget allocation in Maharashtra, treatments being included on the Essential Drugs List in Orissa, and state budget procured treatment being made available in Karnataka.

Since 2020, a parallel NNHF project has been working towards strengthening and standardising care across India through a network for national referral and training centres. The project has gone beyond training and equipping the seven participating comprehensive care centres, and crucially means a network of knowledge sharing is in place. “All the big centres were doing their own thing to their best abilities, but not communicating with each other. Talking more helps bridge the gaps, such as identifying common training abilities or finding support for funding. When we have a network of strong training centres, we can benefit the patient community by supporting the decentralisation of quality diagnosis, for example” explained Dr Bipin Kulkarni from the ICMR-National Institute of Immunohaematology in Mumbai at the project’s closing workshop. Dr Dinesh from SGP Institute of Medical Sciences in Lucknow agreed, adding “Now trainers are on the same page, we are all using the same manuals that were developed through the project, we can be more frank when we ask other doctors for things and we feel able to train more efficiently”.

A workshop with HFI and healthcare professionals from across the country was held to identify how to further standardise haemophilia care in India.

The medical and patient communities in India are now planning to leverage on these successes to expand the network to reach even more people living with haemophilia.

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