Landmark Judgment Of Delhi High Court For People With Hemophilia

In a landmark order, the Delhi High Court has directed the Delhi State Government to make the Anti Hemophilic Factor (a life saving drug) available to people suffering with Hemophilia [Vide Civil writ Petition No. 16326/2006]. The Government of NCT of Delhi will be setting up a special facility to treat hemophilia patient and give AHF facility at Lok Nayak, DDU and GTB Hospitals. in pursuance to the recommendation of the committee set up by the High Court. Under this scheme all BPL families will be supplied AHF free of cost, free treatment to all Hemophilia patients at these 3 hospitals, in respect of APL (patients with minimum 3 years domicile in Delhi, the following graded payment system will be followed – a] With family income upto Rs.2 lac, 80% cost of AHF will be waived and in exceptional cases even 100%. b] With family income between Rs.2 lac to Rs.5 lac, 50% cost of AHF will be waived c] Families having more than Rs.5lac income will be bearing the full cost of the AHF. The Union of India under the recommendation of Department of Health and Family Welfare has taken the following action: 1] The Central Government Hospitals functioning in Delhi will provide AHF to the entire Hemophilia patients falling under BPL and to all the patients reporting in emergency arising out of fresh bleed. 2] Monthly clinics for Chronic and Deformed cases of Hemophilia on account of repeated internal joint and muscle bleeding will be started shortly in the Department of Physical Medicine and Rehabilitation (PMR) in Safdarjung Hospital and Kalawati Saran Hospital. 3] The Guidelines for Hemophilia management will be displayed in all the Central Government Hospitals. Hemophilia Federation (India) filed a PIL last year requesting the Government to make this life saving drug available and also generate awareness about this disorder. All factor concentrates in India are imported and safe treatment is unaffordable to 90% of the persons affected by hemophilia in India. There is no public institutional framework working within this sector. Management of hemophilia is further complicated by low economic conditions, lack of awareness among local and regional government, physicians, patients and their relatives and poor education. In the absence of any support structure for resources except that provided by the immediate family, a chronic disorder like hemophilia can be highly debilitating, physically, socially and economically. Under such circumstances and with severe lack for funds, HFI finally decided to appeal to the High Court through renowned Human Right lawyer, Mr. Colin Gonalves. Though jubilant with the order, Mr. Anil Lalwani (President – HFI) feels that there are many areas where Government should intervene and hence would be demanding the following – 1] To have a monitoring and a steering committee including HFI for regular feedback on the methods of implementing the new scheme, 2] Revision of the norms for free treatment for BPL by the government of NCT of Delhi revises will be applicable for people with Hemophilia too, 3] To replicate the scheme for Delhi in other states too and set aside certain resources available to the states from the Flexipool of the National Rural Health Mission to implement the scheme for people with Hemophilia, 4] Public message to be broadcasted and televised on AIR and Doordarshan under Public Awareness segment, 5] Clear assurance from the Delhi Government for Rs.25 lacs per year as fund on a continuing basis, 6] Sanction of 15 million units of AHF from NACO, the proposal of which is pending with them, 7] Hospitals, not having storage or diagnostic facilities should acquire them and organise OPD clinic in the hospital every month and 8] Government should consider manufacturing the AHF drug in India.

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