'The life of a haemophilic is anything but easy. You have to be careful about every step that you take, as any simple scratch can prove fatal,' said Anil Lalwani of the Pune chapter of the Haemophilia Society of Maharashtra (HSM).
“The life of a haemophilic is anything but easy. You have to be careful about every step that you take, as any simple scratch can prove fatal,’’ said Anil Lalwani of the Pune chapter of the Haemophilia Society of Maharashtra (HSM).
Lalwani a haemophilic himself, was addressing the media to highlight their plight and the Maharashtra government’s apathy towards them.
Haemophilia is a condition where blood does not clot naturally. A genetic condition, the sufferer has to be extremely careful about the any accidental injuries as that can be life-threatening. A majority of the sufferers are men, while women are carriers of the defective gene.
HSM, a registered society in the city, is a 20-year-old organisation dealing with the cause of the sufferers. As per records with the society, there are 15,000 sufferers in western Maharashtra, with the city having 600 sufferers.
Lalwani said, “In case of bleeding, a sufferer has to be injected with factor 8 injection. However, a single dose of the injection costs Rs14,000 which is quite unaffordable for most of us.’’ In Maharashtra, the treatment of hemophilia, is difficult given the fact that the government hospitals do not support the same.
However, Lalwani pointed out that in states of Delhi, Uttar Pradesh, Bihar, Assam, Karnataka and Tamil Nadu, the government hospitals subsidised the cost of treatment. “In all these states, this intervention happened as a result of public interest litigation (PIL) filed by the Hemophilia Federation of India. In Maharashtra, we are holding exhaustive talks with the government to help us, but we are not making any headway. As a last resort, we might have to file a PIL,’’ he said.
Lalwani also stressed the need of pre-marriage genetic counseling to prevent the birth of haemophilic children. HSM’s Pune chapter can be reached at No 16&17, MB Classics, ground floor, opposite Lohade Hospital, Chinchwad-411019.
Email: hemophilia21@bsnl.in.
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