The Blood Relation

The Thalassemia & Sickle Cell Society fills a major gap in care but it is up to the government to recognise Thalassemia as a serious public health issue, starting with formulation of a national policy, say parents

Imagine a child, pale and weak, struggling to breathe. Imagine a mother running around frantically to find someone to save her unwell child. Imagine a world where there are no options, no avenues of help and no chance at good life. Imagine what a nightmare such a life is!

But the mothers of those sick children do not need to imagine at all. They know exactly what it is like to have a poorly child on hand and a severe deficiency of resources to deal with the situation.

Mothers of Thalassemic children, who need constant care and medical intervention but hardly have necessary support mechanisms, tell a story that is wrought with complexities and questions.

"Twenty years ago, when my son needed a unit of blood every fortnight, I literally ran around, knocking on doors of strangers, asking them to please donate one unit.

So that my son will get a shot at life, for another fortnight," recalls Sunitha. It is another story that her son, now 20 years old, is a bright student of Engineering and has grand plans for his career.

But the story changed since. "When I discovered that my son was Thalassemic, my world collapsed around me. But I picked myself up and went looking for information. There was none available here. So, I travelled around the country, gathering sources and knowledge.

And that journey culminated in the setting up of ‘Thalassemia & Sickle Cell Society’, today the world's largest such organisation," explains Ratnavali Kottapalli, founder of the Society.

Thalassemia is a diverse group of genetic blood diseases characterised by absent or decreased production of normal haemoglobin, resulting in a microcytic anaemia of varying degree. The affected typically need frequent blood transfusions, iron chelation and associated treatments for normal functioning.

Some types of Thalassemia are serious disorders and can lead to a life-threatening condition if not closely monitored. It has no known cure. The abnormality results in improper oxygen transport and destruction of red blood cells and has severe effects such as iron overload, bone deformities and even heart diseases.

Lack of awareness and policy, support systems and infrastructure have made Thalassemia an obscure condition for the people and a non-priority public health issue for the Government.

Setting up of the ‘Thalassemia & Sickle Cell Society’ (TSCS) changed the scenario quite a bit and gave a hope, an anchor to parents of these children. A 19-year-old organisation, TSCS now has 2,300 plus patients enrolled to get services from an exclusive Transfusion Centre and a well-equipped Blood Bank.

The Society has been mentioned in the SSC Curriculum. It has so far successfully facilitated almost 73,000 free blood transfusions. It has organised multi-organ screening camps and conducted 1,672 awareness programmes. The Society has so far reached out to more than 10 million people through various channels.

TSCS runs entirely on donations and offers everything for free, including food for those come to get diagnostic tests or transfusions. The Society needs about Rs 20 lakh for these facilities every month. There is, mercifully, sufficient support for now, but is it sustainable?

"It isn't. More people are now aware of the issue now and donate but it is hardly sustainable. And the cost of any break can be quite heavy. Enough is not being done. Especially in terms of Government policy," says Ratnavali.

India is estimated to have a whopping 40 million carriers and over 1,00,000 Thalassaemia majors under blood transfusion every month. However, the Government is yet to recognise this as a public health priority and formulate a national policy.

The absence of a plan to prevent and control Thalassemia has several fall-outs such as lack of preventive testing and treatment facilities, funding mechanisms, an absence of widely-available medication supply, transfusion and blood bank facilities.

It has just been included in the purview of the 2016 Rights of Persons with Disabilities but the benefits are yet to become manifest.

TSCS has now an ambitious goal - to strive for a Thalassemia-free Telangana (TFT). The Society held an event ‘Thal Beats 2017’ recently, raising resources for setting up a Thal Care Centre.

The Centre will also have a research and bone marrow transplantation unit by Narayan Das Lohiya Charitable trust, a unit of TSCS, in support of Thalassemia-affected children and augmenting the efforts of the global awareness programme. The Centre is proposed to be set up at a cost of Rs 15 crore with comprehensive care and control of Thalassemia.

“Telangana is estimated to have some five per cent carriers, so population screening is an absolute must. We cannot afford to have more cases anymore,” says Ratnavali. Thalassemia is a debilitating disorder and involves trauma and severe physical pressure for the patient and stringent lifestyle compulsions for the family.

The affected themselves are doing a commendable job of living life to the fullest possible extent, with many toppers and brilliant achievers emerging from their ranks. But it is up to the Government to ease the burden of treatment and support that is now essentially borne by the private sector, NGOs and individuals.

By: Usha Turaga-Revelli