Abhishek Kumar: Amplifying Patient Voices to Transform Haemophilia Care in Bihar
Abhishek Kumar, MA Psychology, Hemophilia Advocate, shared a post on LinkedIn:
“Growing up with severe hemophilia in Bihar, my only ‘treatment’ for years was whole blood transfusions and ice packs. I still vividly remember lying awake for weeks at a time, entirely consumed by joint pain, feeling like my suffering was completely invisible to the healthcare system. When you grow up feeling unheard, finding your voice becomes a survival tool.
That is why the World Hemophilia Day 2027 theme—’Every voice counts‘—resonates so deeply with me.
It reminds me of the exact reason we started fighting for policy change in our state.
What began as a personal struggle eventually turned into grassroots advocacy, leading to a 26.33 Rupee crore policy breakthrough to bring modern, non-factor therapies (Emicizumab) to the patients of Bihar.
I am deeply honored that the World Federation of Hemophilia (WFH) has featured my journey on their platform. I do this work because survival shouldn’t require a miracle. I
want the next child born with hemophilia to have uninterrupted care, a schoolbag on their shoulders, and far less need for luck than I did.
You can read the full story on the WFH platform.”
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