Though several policy decisions have been taken to fight Haemophilia, the need of the hour is to make those promises come true
For a country like India, where public health service is under extreme pressure to cater to the health and nutritional needs of a large population base, it is not surprising that persons with Haemophilia, which not only comparatively represents a small segment of the society, but whose medical needs are proportionally much larger, has remained unnoticed. Nevertheless, there have been some good news in the past few months for the Hemophilia community as a string of measures in the health and social sectors were undertaken, which has set the ball rolling for a future which will offer many opportunities to this community.
The most important initiative taken in recent times was the passage of the long-pending Rights of Persons with Disabilities Act, 2016, included three blood disorders, including Hemophilia. For those who do not know, Hemophilia is an inherited single gene disorder with an incidence of one per 10,000 births. It exhibits as spontaneous or injury-induced haemorrhagic episodes in patients, progressing to chronic disability and premature mortality if not treated in time. Though the bleeding disorder is included in the Act without benchmark disability status, the Union Government has set up a co-ordination committee of all stakeholders to address this much-needed demand.
The National Health Mission (NHM), a flagship scheme of the Union Government, has come out with programme guidelines for prevention and treatment to address the problem of the people with haemophilia. Support is being provided in almost all States to supply essential drugs free of cost while the Drug Controller General of India (DCGI) is making efforts to ensure that clotting factor concentrates (CFC) become part of the essential drug list. We at the Hemophilia Federation of India (HFI), feel that if these are implemented in letter and spirit, it will bring a sea-change in the way medical care is being presently offered to the community.
The NHM too has brought Hemophilia under its flex-pool fund scheme and is working closely with the Union Ministry of Social Justice and Empowerment to fix the disability criteria for Haemophiliac. Once this is done, rehabilitating disabled Haemophiliac will become easier: They can have maximum coverage in various central and State benefit schemes and in various autonomous Government organisations or in public sector under takings, railways and Army etc. Also, suggestions in terms of creation of bleeding disorder facilities in medical colleges and district hospitals to develop coagulation labs, factor producing mechanism and purchase policy are being actively considered.
Another major step in the pipeline is the preparation of guidelines for the treatment of the people with haemophilia. A panel of experts, in coordination with Vineeta Srivastava, national consultant and coordinator blood cell (NHM) with the Union Health Ministry, is working to frame guidelines which will help the States to look upon to better manage the patients suffering with the disorder. The Government seems to have realised the fact that there is a huge gap in the actual requirement for haemophilia management and what is available. Presently, the quality aspect is being compromised in some States like Delhi and Haryana. In fact, just a few weeks ago, there have been complaints regarding ‘defective' drug (Anti Haemophiliac Factor- Factor VIII concentrate) being given to patients at a hospital in Telangana. Factors are blood products administered to the patients in case of any injury.
According to an estimate, in India, there are over 1.20 lakh people who suffer from haemophilia and need treatment but just around 20,000 persons are registered with the HFI, others are yet to be diagnosed. Of these, just 40 per cent are getting free drugs and treatment as medicine support is not consistently available in some of the States. The Hemophilia market report released recently aptly notes that low diagnosis rate of hemophilia in developing countries like India is due to inadequate treatment facilities, limited disease knowledge, and a shortage of treatment supplies. It notes that diagnosis rates of hemophilia are very low, especially in the developing countries like China and India. In China, India, and Indonesia, disease diagnosis rates are 56 per cent, 12 per cent, and four per cent, respectively.
As also has been pointed out by Additional Secretary (Health Ministry) Manoj Jhalani, interventions that exist are rather ad hoc and have to be addressed in a more systematic manner, so that services can be provided across the length and breadth of the country — both in urban and the rural areas and also to those who may not be in a position to afford these.
No wonder, there is an immediate need for a national programme for haemophilia with components of prevention, early treatment for kids, care for patients such as setting up the haemophilia treatment centres in each districts, surveillance and education and support for families besides provision for genetic counselling materials. This will help bring more people with haemophilia in the mainstream to avail early treatment. Having signaled the commitment to an inclusive society that includes people with haemophilia, the Government now needs to bridge the gap between promise and performance as has also been asserted by Rajya Sabha MP Meenakshi lekhi, who has championed the cause of this sector at various forums. lekhi rightly said that the humanity, which is born with this disorder (hemophilia), needs to be taken care of.
(The writer is President, Hemophilia Federation, India)