Since last year Sankalp India Foundation had been requesting the Government of Karnataka to come up with a comprehensive policy for support for thalassemia.
The first major step in the direction of adequate support for patients suffering from thalassemia was taken in the form of a review meeting of State Blood Cell on 31st March 2017 where various stakeholders were invited to share their inputs for a state-wide proposal. The secretary to the Government, Health and Family Welfare Department, Government of Karnataka, has issued two circulars - one for the setting up of day care centres for the treatment and care of hemoglobinopathies and the other one for compulsory and universal screening of pregnant women for hemoglobinopathies.
We congratulate the Government of Karnataka on taking these progressive steps. This is a very welcome departure from the situation where the state did not recognize hemoglobinopathies as an area of concern at all. While the circular shows the intent of the Government, the percolation of the message through the healthcare system and the laying out of a delivery mechanism is the current challenge at hand.
This circular also brings Karnataka a step closer to its neighboring states of Tamil Nadu, Maharashtra, Telangana and Andhra Pradesh beside several other states in the country who have comprehensive support for thalassemia care. Blood, the heart of the care for thalassemia continues to be a challenge and the need to have centres created around facilities which can ensure adequate supply of safe blood for these patients is paramount. Neighboring states have found much success in models where the state supports the patient population coming from families with income less than Rs 2,00,000 with cost of treatment often in public private partnership with organisations which have already been working for care and management of these children. Voluntary Health Services-Chennai, Thalassemia and Sickle Cell Society-Hyderabad and Comprehensive Thalassemia Care Centre- Mumbai are examples of such models.
An important shift in policy is the focus on prevention. By mandating to screen all pregnant women in the state the Government has taken a huge step forward which comes with equal amount of challenges. Will the screening be restricted to those who get maternal screening done in public healthcare setup alone? Will the screening facility at the district level be well networked with the last mile sample collection and transportation teams? How effective will the further screening of the couples who are identified as carriers be? These are all questions which are to be answered. But with enough tracking mechanism in place and a strong will to drive in the change, this is doable especially with the very well invested upon network which has been created for care and management of pregnant women.
It's time that the various stakeholders work in tandem with each other towards two goals; ensure that the kids living with thalassemia get best option for care and management and ensure that we stop thalassemia and other hemoglobinopathies completely by way of effective prevention.