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HRLN files PIL seeking implementation of Rights of Persons with Disabilities Act 2016 for treatment of thalassemia patients

Date : 03/09/2018

Human Rights Law Network filed a fresh Public Interest Litigation (PIL), in the Supreme Court of India on Friday (31st August) under Article 32 of the Constitution of India, seeking strict implementation of the Rights of Persons with Disabilities Act, 2016 and policy for treatment of persons suffering from thalassemia in compliance with its obligations under the Act and the UN Convention on Rights of Persons with Disabilities and uniform and rigorous enforcement of the same in across India.

India is considered to be the thalassaemia capital of the world with 40 million carriers and over 1,00,000 thalassaemia majors under blood transfusion every month. Despite this, there has been no move to put in place prevention and control programme at the national level. While the number of thalassaemics is growing in India, the effort to provide patients better health care is largely spearheaded by the private sector and non-governmental organizations.

Over 1,00,000 patients across the country die before they turn 20 years old due to lack of access to treatment. With preventive health checks not being the norm in India, people suffering from thalassaemia are unknowingly passing on this genetic disorder to their children.

According to March of Dimes: Global Report on Birth Defects, it is estimated that the prevalence of pathological hemoglobinopathies in India is 1.2 per 1000 live births. It has been suggested that there would be 32,400 babies with a serious hemoglobin disorder born each year based on 27 million births per year in India. India as a nation spends Rs. 15,000 crore on thalassemia treatment each year.

Statistics show that 80 per cent of the affected children are born in middle and low income countries. About 70 per cent are born with sickle cell disease and the rest with thalassemia disorders.

The PIL filed by HRLN brings to notice the lack of measures adopted by the centre and the state governments to combat thallasemia disease in India. Although, the care and management of patients with thalassemia was part of India’s 12th Five Year Plan (2012 – 2017), the governments have failed to exhibit low-cost medical parameters to assist thallasemia patients.

The mainstay of treatment of thalassaemia is blood transfusion combined with iron chelation therapy. While blood transfusion has the advantage of prolonging the patient’s life, it causes iron over-load, which subsequently damages the vital organs.

The non-availability of services such as blood transfusion and chelation therapy at local hospitals and nursing homes as a result the children along with their parents have to travel to the bigger cities to avail medical services.

Most hospitals that are presently providing treatment to these children charge heavily for services provided such as blood transfusion and chelation therapy to control and reduce Iron-poisoning.

The governments have failed to put in place guidelines and necessary notifications to provide free treatment in the form of regular free and safe blood transfusion, chelation therapy in case a child is suffering from Iron poisoning, regular access to medicines like Desirox, Asunra, Kalfur or Defrijet for oral usage and Desferal in case of chelation therapy.

The Rights of Persons with Disability Act, 2016 in its Section 4 (b) to the Schedule under Section 2 (zc) of the Act recognizes Blood Disorder such as haemophilia, thalassemia and sickle cell disease as a specified disability under the Act.

Contrary to its obligations under the Act, the Union of India has not only failed to frame rules and guidelines for the care and treatment of thalassemiacs but also has not taken any steps to create accountability for the funds allocated for the same. According to an RTI response from the State of Uttar Pradesh, Rs. 500 Lakhs was allocated to the state for the year of 2016-17 to be utilized for providing services and free medical treatment to persons with thalassemia.

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