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Thalassaemia on the blind spot? Call to improve prevention, treatment and care

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Shobha Shukla, Citizen News Service - CNS

(CNS): "It is not only about preventing new births of thalassemic infants; about chelation, about blood transfusion and about availability of services needed; but also about preventing complications related to Thalassaemia. We cannot take half-baked measures. Because if the patient dies prematurely, it will be a huge waste of national resources--10-15 years worth of investment just goes down the drain. Inadequate chelation and blood transfusion can result in hospitalization in intensive care and cost a lot. Patients should not only be kept alive but also grow up to be productive members of society. Besides the expertise, we also need experienced and enthusiastic physicians, and cooperative patients who are willing to take treatment as they grow up," said Dr Michael Angastiniotis, Medical Advisor to Thalassaemia International Federation.

The Federation of Indian Thalassaemics and Thalassaemia International Federation recently organized a meet in Lucknow to focus attention of the state government and NGOs on children impacted by thalassemia in UP and to mobilize treatment and care for improving their survival and quality of life. Michael was speaking with Citizen News Service (CNS) at this meet.

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The word thalassemia is derived from the Greek word 'thalassa', meaning the ocean, as the patients were initially identified along the coast of the Mediterranean Sea by Lee & Cooley in 1925. Thalassaemia is an inherited genetic blood disorder where the patient's body cannot produce adequate haemoglobin, resulting in a need for continual blood transfusion. Moreover, the lifesaving blood creates an iron overload in their system. Iron overload is the major cause of morbidity for thalassaemia patients. The excess iron must be chelated out of their system. To bring up and treat a person lifelong for a disease like this is not easy, even though patients who are optimally treated can lead quality life.

The disease is hereditary and is passed on to the child through parents who carry the thalassaemia gene. A 'carrier' has one normal gene and one thalassaemia gene or 'thalassaemia trait'. Most carriers lead normal, healthy lives. If only one parent is a carrier, the offspring will be a carrier too, but not develop the disease. But if both parents are carriers, there is a 25% chance of a thalassaemia-major child being born to them.

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Dr Michael Angastiniotis comes from Cyprus where 1 in 7 persons is a carrier (against the global average of 1 in 20), and 1 in a 1000 people is actually diseased. It is a small country with a reasonably good health system, so they are able to manage the patients reasonably well. But, he agreed that it may not be easy for a diverse and big country like India.

He stressed upon the need to create awareness about the disease in the masses to prevent it and also to improve quality of life of those who have it. Yes, it is difficult for people to understand about a hereditary disease that they might pass on to their children and hence have to decide what to do. The possible decisions could be to not marry, or to not have a child, or to terminate the pregnancy. So we need to identify the carriers early enough and give them non-directive counseling--not tell them what to do but tell them what are the choices available and let them decide, he said.

Bone-marrow transplant, although risky, is a cure that is available today. But Michael shared with CNS the good news that there are several other ongoing studies giving encouraging results: "The new treatments in the offing are an added incentive to keep our patients well and free from complications (especially of the liver and heart) so that they can benefit when the new cure comes. And I can foresee it coming soon--within the next 3-5 years we should be able to cure most of the thalassaemia patients.

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"The gold standard response to thalassaemia would be to achieve a normal life for a person living with it. Till the new cure comes we need to expand experienced monitoring (and not just basic monitoring), to monitor the patients' progress. Techniques like MRI to measure the iron in the liver and the heart (as is being done in other countries), must be incorporated for an integrated approach to disease management. We must also develop experts' patients' programme, involving patients, who have the will and intelligence to fight, to do their own advocacy, and to teach their peers."

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Citizen News Service (CNS) specializes in in-depth and rights-based, health and science journalism. For more information, please contact: www.citizen-news.org or @cns_health or www.facebook.com/cns.page

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