Sankalp India Foundation is committed to improving the access to care and management for the children suffering from thalassemia. In order to ensure that each child walking into one of the centers supported by us gets adequate (if not at par with the best) care and management, we constantly strive to find solution to the most pressing problems of the management of this disorder. Significant progress was made in the month of February to ensure proper management of thalassemia for the poorest of poor.
Our Scenario
WHO estimates 90%[1] of the children born with thalassemia in India do not get access to proper management. In this setting, where only a few children are getting access to some kind of systematic management, the management of thalassemia is grossly inadequate. Most centers are keeping the regular management limited to the blood transfusions and very rarely, iron chelation therapy. Other interventions are reserved till the time the child reports severe problems and needs emergency care and management.
Though partial management is helpful to keep the child alive in an immediate sense, inadequate complication prevention and monitoring ultimately is causing untimely deaths. The severe complications associated with the chronic transfusion therapy are often noticed only in most advance stages - when the clinical symptoms become apparent. Thalassemia being a chronic disorder, the thalassemiacs receive a step motherly treatment in terms of the urgency with which the medical systems treats these patients. One can often find children with large liver, large spleen, those who have difficulty in normal movement/activity, those with endocrine problems (including delayed sexual maturity, stunted growth etc.). All of these are manageable and more importantly preventable conditions. However, there is a conspicuous absence of integrated and comprehensive mechanisms for complication management - let alone prevention. Consequently, the child, even if (s)he is on transfusion and chelation therapy inches towards certain, painful and untimely death. Even those who are still battling the disorder tend to have extremely bad quality of life.
The question arises - what is adequate management? Luckily, the amazing work done by Thalassemia International Federation has led to well evolved guidelines[2] for management of thalassemia covering all aspects of complication prevention, monitoring and management. This freely available knowledge is these for all to see. Unlike several diseases/conditions for which most widely available literature is tailored to the healthcare setup of the developed world, 'Thalassemia', being more prevalent in the developing world, the guidelines are remarkably relevant to the care and management setups in the developing world.
So what constitutes good management?
- Adequate blood transfusion of appropriately processed blood products maintaining the hemoglobin above 8-9 gm/dl.
- Adequate iron chelation therapy.
- Regular monitoring for hematological, serological, biochemical, endocrinological , orthopaedic, cardio and other relevant parameters for early detection of complications through competent laboratories.
- Access to specialists who are able to assist in prevention, monitoring and management of specific complications.
- Causing minimum discomfort to the patient for the sake of treatment in order to preserve the quality of life and time spent by family on disease management.
Institutions and supporting organisations working in the field of thalassemia management in India need to start looking into complications prevention and management. This is also complicated because of the need of advance quality-controlled labs which is by itself difficult in most parts of the country. Added to that, the onus of consulting the specialists is left to the patients. With the number of specialties involved in management and care, families often seek advice too late. Cost, access and time - the three problems together make complications management in thalassemia extremely difficult.
This month, Sankalp India Foundation is happy to bring to you the story of 3 innovations which the organisation has introduced in order to enhance the care and management of thalassemia. Since the centers we support are catering to the needs of the children at the bottom of the economic pyramid, these innovations have come up resource constrained setup of public funded program making the most judicious use of the resources.
Problem 1: Regular Monitoring
SIF has initiated a new program for systematic access to medical investigations for the children supported by the organisation. Since March 1 2014, all necessary medical investigations are available to the children from the day care centers themselves. The software program - 'ThalCare' which the organisation uses for management of thalassemia automatically indicates when a medical test may be needed based upon the international guidelines. The samples for investigations are collected at the centers when children come for transfusion. The organisation has partnered with a reputed and adequately competent laboratory for medical investigations. This makes sure that:
- medical investigations happen in a timely manner
- the quality of medical reports is managed centrally for all patients
- there is no need for the patients to travel over the city from lab to lab to get their medical tests done
- the reports are automatically transmitted to the centers and to the software system and therefore the need to track paper records is no longer there.
- since the cost of the investigations is negotiated for all patients together, it is far more economical than covering for the costs that the patients incur when they get investigations done by themselves.
We hope that with regular monitoring made accessible, within next few months we should be able to bring down the complications rate significantly.
It is interesting how the tendency to save upon the costs incurred on regular investigations leads to far much more expenses when the same child in brought back with major complications and needs emergency management. Periodic medical investigations are absolutely necessary for effective thalassemia management, and just like transfusions and chelation, management of the same through the support organisations leads to effective and optimal utilisation of public contribution and funds.
Problem 2: Access to Experts
Any single visit to a specialist incurs significant consulting charges, time and motivation from the family of the thalassemia. More importantly, since there is no connect between the treating physician at the center where the transfusions are happening and the expert whose advice is being sought, the information available to the expert is limited - leading to request for even more medical investigations.
'ThalCare', our tool for thalassemia management has enabled telemedicine with experts for the thalassemiacs. A significant step forward was taken in February when the 3 centers that are using ThalCare have started getting into a weekly call where the doctors are able to discuss the problems at their end with the experts in the other centers. This has led to resource pooling and has also made it possible for the experts to give advice in a quick and efficient manner to the treating physicians - who then oversee the implementation of the advice for the patients. Experts are able to help with ease, local
This program involves identification of physicians are able to build their skills and patients get access to multi-disciplinary care and monitoring without taking an extra step or spending an extra rupee.
Problem 3: In-effective utilisation of public healthcare schemes
Pressed against the wall to organise for proper care and management, Sankalp India Foundation left no stone unturned to find mechanism to support these children. In the process the organisation realised that there are certain schemes by local and national government which could be used by these families. There was also a realisation that the knowledge about these schemes is limited and the barrier in the way of access to them lies in the cryptic nature of eligibility criteria and administrative requirements. Starting February the organisation has started the process of helping the families identify the schemes under which they are eligible for benefits. The families are being assisted in the preparation of the necessary documentation.
References
1. Modell B, Darlison M. Global epidemiology of haemoglobin disorders and derived service indicators. Bull World Health Organ. 2008 Jun;86(6):480–7.
2. Cappellini M-D, Thalassaemia International Federation. Guidelines for the clinical management of thalassaemia [Internet]. 2008 [cited 2014 Mar 13]. Available from: http://www.ncbi.nlm.nih.gov/