I was born with severe haemophilia B in 1971, a time when there was no factor concentrate and only blood was available for transfusion. Life was a journey of excruciating pain and not a ray of hope. I grew up to become a Chartered Accountant and few years ago I fought Hepatitis C (HCV) infection with Interferon and now I am able to live life again.

Haemophilia is a genetic disorder where the blood does not clot and an adult needs about four infusions a month to stay active.

During 2012 , along with a few haemophiliacs, I filed a Public Interest Litigation at the Bombay High Court for access to regular medicine supplies after spending about four years of making representations to various authorities including the Health Minister.

The Court ordered the Maharashtra government to make available the anti-haemophilic factor at four designated centres for the treatment of bleeds. The Government started four centres and expanded them to six in the following years, leaving lots of haemophilics in tears of joy and with hope for a better future.

In this journey, I lost many brothers (it affects males) to HIV, HCV and brain bleeds, few times due to lack of treatment. A severe haemophiliac will bleed spontaneously in his joints and muscle. Due to lack of prompt and adequate treatment, he will develop muscle wastage and joint deterioration leading to a severely debilitated condition. Therefore, each spontaneous bleed progressively disables a haemophiliac .One has to understand that every bleed in a haemophiliac leads to progressive disability in the joints, crippling them over a lifetime

The cost of medicine for a haemophiliac to live normally (requiring about 30,000 to 50,000 units of medicine) is anywhere between ₹5 lakh and ₹10 lakh. However, if a person develops resistance to a normal blood product, the cost of treatment can run to ₹20-30 lakh. This being a rare disorder even smaller countries like Iran, Tunisia and Russia offer free treatment to patients. There was regular supply of medicine from 2012-13 to 2014-15. But supplies started getting disrupted in 2015 and stopped from 2016. From October 2016, Factor 9, Novo and Feiba have not been available. Thirteen tenders have been floated and companies are ready to supply, but no decision has been taken. On May 5, an emergency tender for ₹9 crore was issued and shown to the High Court, but medicines are yet to be procured.

The Court also observed that a separate hospital/department be created as haemophiliacs need to be treated promptly. Neighbouring Gujarat has makes a provision in the Budget, and this is revised annually. Further it also procures recombinant products which are virtually free. We fail to understand how the momentum in Maharashtra is coming to a halt despite having started on a very positive note.

We need not only a National Health Mission fund, but also a State government allocated fund. The Brihanmumbai Municipal Corporation too should increase allocation towards these medicines. At Mumbai's KEM Hospital, we have patients coming not only from Maharashtra but all over India with life-threatening bleeds.

The inclusion of haemophilia in the Disability Bill signals the intent to provide care to people with haemophilia in India. The Government can set up a Public Private Partnership for manufacturing recombinant products. A rare disease like haemophilia needs state intervention. A beginning has been made but we need to take it forward.

With regular medicines, haemophiliacs can succeed in any profession. Indeed, one has just climbed Mount Everest.

(The writer is Founder of Haemophilia Society Mumbai Chapter and is part of advocacy for Haemophilia , HCV and Disability. The views are personal.)

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