Thalassemia is a disorder where a person’s body does not produce it’s own blood. In the west, people with thalassemia lead near normal lives. In our country, most of the children do not live to celebrate their 18th birthday! Thalassemia can be completely avoided with proper awareness in parents. A child suffering from it can lead normal life with proper care and blood transfusion on regular basis.
Last year, on 14th November, Sankalp India Foundation started the Thalassemia Day Care Centre at Indira Gandhi Institute of Child Health, Bangalore. More than a year has passed since Sankalp took a leap ahead and included management of thalassemia as one of the activities that the organisation was taking up. When Sankalp tried to access the situation for the children suffering from thalassemia in Bangalore, the volunteers realized that the actual problem 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. 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 a scenario Sankalp found IGICH doing commendable work with thalassemia. Detailed discussions with the doctors and administration led to a plan which finally took shape of the ‘Thalassemia Day Care Centre’. 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.
In a year’s time, the number of patients attending the day care facility has increased from 64 to 185. This shows the increase in confidence that the patients have in the treatment facilities that are available at IGICH. Not one of the patients has had to organise for blood by himself in last year. Sankalp volunteers have arranged for appropriate blood components for all patients. Also, the baseline hemoglobin at which the patients come to the thalassemia day care has raised from 6.8gm/dl to nearly 8 gm/dl. With regular tests being done for all children, several other medical issues are getting unraveled. Appropriate treatment plans have been put in place and are being delivered. Also, 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 most Sankalp volunteers being engineers, a powerful information technology platform is in place, which ensures effective delivery mechanisms and fast improving vital parameters of the children. Sankalp is also planning to extend the facility to more centres.
However, major 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, another 300 – 400 extremely poor children come to different hospitals in Bangalore each month and struggle to get blood transfused- leave alone anything else. 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!
To reach a stage when Thalassemia becomes a problem of the past, it is important the day care model is replicated across the country! It is important we participate! Sankalp has done nothing exceptional. It only did what the medical textbooks said. But in order to deliver – the support of doctors, blood donors, volunteers, parents, and everyone else who chipped in with their bits was phenomenal. There is a long road ahead and to walk that the way Sankalp must, each one of us must contribute.
We can donate blood for one thalassemia patient regularly, thereby minimizing the chances of infection in him/her. We chip in for better facilities in thalassemia management or support a child’s travel or stay. We can also volunteer. There are a lot of other ways we can help uproot thalassemia.
Please contact me or contact Sankalp at sankalp.admin@gmail.com to extend your support towards the cause or to know more.
सौरभ राय | Sourav Roy 