14th November is celebrated as the children's day. We at Sankalp also mark it as the day when the Thalassemia Day Care Centre at Indira Gandhi Institute of Child Health was formally inaugurated. One year has passed since Sankalp India Foundation took a leap ahead and included management of thalassemia as one of the activities that the organisation was taking up. It has been an eventful journey. However, we must admit, this is no time for celebration.
Thalassemia is a disorder. In the west, people with thalassemia lead near normal lives. In our country, most of them do not live to celebrate their 18th birthday. Recent years have shown tremendous research and improvement in the field of medicine. With the introduction of oral chelators, better blood banking, better management of complications and greater awareness in the medical fraternity, management of thalassemia is no longer the biggest challenge. Children who get proper treatment, live normally.
A year back when Sankalp tried to access the situation for the children suffering from thalassemia in Bangalore, the organisation realised that the actual problem for our nation was in the arena of effective delivery and access. Most children, even in private setup, were being treated unscientifically. At most places, the treatment was limited to blood transfusion with the other complications being handled on an incidence by incidence basis. Oral chelators are costly and were out of reach for most of the patients. The lab tests which act as early indicators and serve the purpose of prevention of complications were being done scarcely. To top it all, the onus of arranging for blood laid on the patients.
In such scenario Sankalp India Foundation found Indira Gandhi Institute of Child Health doing commendable work with thalassemia. The hospital was catering to 64 patients and most of the facilities needed were present in-house. The best part was the enthusiasm on the part of the doctors led by the director of the institute. Detailed discussions led to a plan which finally took shape of the 'Thalassemia Day Care Centre'.
Applied Materials, a long standing partner with Sankalp for the cause of blood donation showed keen interest and belief in Sankalp's proposal to set up a dedicated facility for thalassemia at IGICH. The plan was to setup a facility which would bring together the power of information technology, a dedicated centre manager and counselor and the latest in the field of medicine to ensure that each child who comes to the institute get's the care and treatment that they should. Applied Materials chipped in with all the resources that were needed to be added to the existing infrastructure at IGICH to get the ball rolling.
On 14th November 2012, when the day care was inaugurated, it was a big opportunity and an equally big challenge at the same time. Sankalp India Foundation was beginning to take steps in an unknown terrain and the stakes were high. All through the last year, Sankalp has been sharing with you the updates on how the progress was made. However, looking back three parameters being exceptional cheer into the organisation.
- Not one of the patients has had to organise for blood by himself in last year. Appropriate blood components have been arranged for all patients.
- The baseline hemoglobin at which the patients come to the thalassemia day care has raised from 6.8gm/dl to nearly 8 gm/dl.
- Regular tests are being done for all children which are unraveling several other medical issues. Appropriate treatment plans have been put in place and are being delivered.
- The number of children who are receiving chelation has increased by 3 folds.
It is also important to mention that the entire treatment and care being delivered by the thalassemia day care is free of cost. While the hospital is taking up most of the expenses, Applied Materials and Sankalp together have ensured that gaps are covered. Access to world class treatment for the poorest of poor patients has become a reality.
The vision of the day care centre is taking shape, and at a good pace. The progress at the centre reinforces Sankalp's commitment to improve access and effective delivery. With a powerful information technology platform, effective delivery mechanisms and fast improving vital parameters of the children, Sankalp is planning to extend the facility to more centres.
Several challenges remain. As one issue get's sorted out, the other is being looked into. The well being of these 185 children is being taken care of at least on the thalassemia management front. However, earlier in this article it was mentioned that it is no time to celebrate. Another 300 - 400 extremely poor children are coming into Bangalore hospitals each month and struggling to get blood transfusion, leave alone anything else. The awareness and the learning over the last year is both empowering and at the same time, humiliating. More needs to be done and quickly. Each one of these little angels must be given a better chance to lead a normal life, be happy, and fill the world with their shine!
A heartfelt thanks to all the doctors, donors, volunteers, parents, and everyone else who chipped in with their bits to make the Thalassemia Day Care Centre, a facility to be proud of, for all of us!