Final thoughts

Sorry about the very long gap before this final entry. The short version of the reason runs – stupidly busy, horribly poisoned by cheesy croissant, now!

I’ve been back more than a week now, and it’s still quite hard to make any coherent summing up of the trip. One overwhelming impression is the scale of the task the Indian Federation is undertaking. We were in Agra to visit the members of a local haemophilia group. None of them were receiving any free Factor VIII. Which means most were receiving treatment only in the most dire emergencies The young children, in common with almost all of their age we’ve met on this trip, were withdrawn, reticent and clearly nervous. For some this was clearly because they were coping with the pain of joint bleeds – one kid insisted on standing for a photograph despite having a nastily swollen knee. Others were just understandably fazed by the arrival of two white men and a video camera.

But in the teenagers and the adults with haemophilia we encountered there was a remarkable degree of resilience and determination, to make the best of what they had, to live with it and make something of themselves. With these young men if there was a common thread it was an unstated sadness which showed around their eyes. It’s hard to put a finger on the source of this sadness – perhaps their awareness of day to day things that they cannot do. All the teenagers we asked would have liked to be cricketers. Only one of them is still playing, highly irregularly - his elbows bleed. It could also have been a sense of the highly truncated and painful lives they have to look forward to – a burden it is hard to imagine carrying around.

But the medium term prospects for haemophiliacs in India are encouraging. The UK sponsorship scheme will hopefully continue to expand, and will continue to target the most needy children. In the meantime, the Indian economy is growing at 9% a year. Wealth is being created at express space, cities are being rebuilt and expanded. As more money flows in through taxes, the government will find it harder and harder to refuse a well-organized advocacy campaign demanding free, universally available treatment.