Abhishek Kumar: How Three Hemophilia Patients Helped Secure Life-Saving Treatment in Bihar
Abhishek Kumar, MA Psychology, Hemophilia Advocate, shared a post on LinkedIn:
“If you want to change public policy from the outside, be prepared to sit on a lot of waiting room benches.
Recently, the Bihar Cabinet officially approved the Mukhyamantri Hemophilia Yojana with a 26.33 crore rupees budget. It brings the life-saving non-factor drug Emicizumab (Hemlibra) to patients in Bihar who have historically struggled to access basic clotting factors.
But I want to share what it actually took to get that gazette notification printed, because it wasn’t done by a massive NGO or a well-funded health lobby.
It was done by three hemophilia patients: myself, Abhijeet, and Venkatesh.
Over the last few months, this is what our lives looked like:
- Drafting over 100 policy papers, proposals, and official letters from scratch.
- Making more than 50 exhausting visits to Vikas Bhawan and Swasthya Bhawan.
- Sitting in government waiting rooms for agonizingly long hours, sometimes returning home completely empty-handed.
- Burning close to 50,000 rupees of our own money on travel and logistics.
It consumed my life so completely that I literally started seeing government files and the Health Minister in my dreams.
But we just kept showing up.
We showed up so consistently that the security guards, office peons, and top IAS officers started recognizing our faces.
We refused to stop until the system understood our pain.
We managed to meet the Honorable Health Minister, Shri Nishant Kumar, seven times.
The moment I knew we had finally broken through was when he recognized our faces in a crowd, stopped, and asked, ‘Arre, wo aapka Emicizumab abhi approve hua’
It was his decisive leadership and political will that turned an impossible dream into reality. I am deeply grateful to him and the dedicated officials who finally heard us.
But there is a hard truth to this victory.
We fought this battle completely alone.
We received zero support—and faced total non-cooperation—from the local Hemophilia Society.
If patients are left to draft state policies, navigate the bureaucracy, and fight the government by themselves, it makes you question why these local chapters even exist.
I seriously hope the Hemophilia Federation (India) takes note of what independent patients are doing on the ground.
Despite their apathy, WE WON.
Not only did we secure Emicizumab, but our advocacy also unlocked the procurement of Extended Half-Life (EHL) Factor 8 for the state.
When I look back at the exhausting months, the physical toll, and the empty pockets, the frustration just disappears.
My hemophilia brothers in Bihar are finally going to get a pain-free, normal life.
Every single second of that wait was worth it.”
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