Unifying and aligning around a common goal
India’s haemophilia community bears many of the same hallmarks as the country itself: big, fast-growing and richly diverse. Since the creation of the Haemophilia Federation of India (HFI) in 1983, the association has grown to include 94 chapters across four regions. However, the different healthcare priorities in each state mean that until now each chapter has operated independently, leading to a lack of alignment on agendas.
In 2019, HFI members saw the opportunity to unify their organisation around a common goal. In order to speak with one voice to national, regional and state level healthcare authorities, the need became apparent to streamline advocacy messages and align approaches across the chapters.
The 12th project supported by NNHF in India was initiated to unify the patient organisation by laying a common groundwork in each of four key areas: governance of chapters, partnerships with healthcare professionals, advocacy and strategic communication.
One country, one treatment
The goal for India’s haemophilia community is to advocate for standardised national care with one voice, working towards ‘One country, one treatment’. To achieve this, the HFI has focused on defining and communicating a clear vision while at the same time aligning the different chapters around a common approach, thus providing the organisation with a stronger voice.
In 2020 a national policy paper was developed along with guidelines for social media and a standard operating procedure (SOP) for chapter management and compliance. Training of trainers sessions were completed in all regions to support the change process, and the team followed up to identify challenges and next steps.
Building a strong patient organisation
The benefits of a strong patient organisation for India’s large bleeding disorders community are far-reaching and go beyond the need for advocacy. 25-year-old Apporv Khatoor, who lives in Faridabad and has target joints in both ankles and one elbow, speaks with heartfelt gratitude of the support he and his family have received through membership in the HFI:
“My family joined the haemophilia society when I was a boy. The people there were able to help us understand the condition and offer guidance about how to deal with it in daily life. Doctors know about the disease, but the society understands what it means to live with haemophilia.”
Despite the many challenges of bringing HFI members together in times of COVID-19, the project has been successful in laying the groundwork to continue moving ahead on advocacy goals in 2021.