It Is Not Possible To Issue Any Advisory To The State Governments To Prioritise Care For Thalassemia Patients, Centre Tells SC

In a counter-affidavit filed by the Centre before the Supreme Court, the Central Government, through the National Health Mission Section, Union Ministry of Health and Family Welfare, has claimed that “public health and hospitals” is a State subject falling under Entry No.6 List II of Sechedule Seven of the Constitution, and therefore, it is the primary responsibility of the State Governments to provide health care facilities including care for Thalassemia patients in their respective States and Union Territories.

Thalassemia is a genetic blood disorder commonly characterised by the abnormal production of haemoglobin in the body.   The abnormality results in improper oxygen transport and destruction of red blood cells.    It has wide-ranging effects on the human body like iron overload, bone deformities, and in severe cases can cause heart diseases.  The disease has no cure, and people living with thalassemia require regular blood transfusions as an effective measure to prolong life.

What The Petition Prays For

India, considered to be the Capital of  thalassemia, records some 10000 children born with the disorder every year.  Of these, the petitioner, Reepak Kansal, has pointed out 50 per cent die before the age of 20 due to poverty and lack of treatment.  The petition estimates that there are about four million Indians who are Thalassemia carriers and over 1,00,000 patients who require care and support.  “Despite this, there has been no move to put in place any prevention and control programme at the State level as well as national level”, the petition claims.

With preventive health checks not being the norm in India, people suffering from the disorder are unknowingly passing it on to their children.  The petition claims that in Pakistan, a Bill making carrier testing mandatory for relatives of Thalassemia patients was passed in February.  A similar system is in place in Dubai, Abu Dhabi, and Saudi Arabia, the petition adds.

Patients suffering from the disorder require not just free blood transfusion, but free lab tests, and iron chelation medicines, and other supplements, which are expensive, the petition points out.   There is no known cure for the disorder except bone marrow transplant and most patients can neither afford it nor do they have relevant matches with siblings or others.   BMT can be done only for children upto the age of 10, the petition points out.  Prevention, therefore, is cost-effective, it says.

What Is The Centre’s Response?

The Centre  submitted that for each State, the priority area with respect to a particular disease would be different depending upon several factors and circumstances and thus in some States, Thalassemia may not be a major prevalent disease, while in case of other States, it can be one.

The Centre claimed that as per the “Global Burden of Disease Study” conducted in 2015, it was found that top ten diseases causing death does not include Thalassemia.   According to the Centre, the first three leading causes of death in India in 2015, regarding both sexes and across all age groups, are Ischemic heart disease, Chronic Obstructive Pulmonary Disease (COPD), and Cerebrovascular Diseases.

The Centre submitted that though it gives financial support to each of the State Government and Union Territory under the National Health Mission, towards Haemoglobinopathies, which includes Thalassemia, it is not advisable or possible to issue any advisory/instructions to the State Governments to prioritise a particular disease including Thalassemia.

The  Centre further submitted that the National Health Policy, which is an umbrella policy for all the diseases including Thalassemia aims to achieve a Universal Health Coverage (UHC) that is, to ensure effective health services to all the people, while also ensuring that the use of these services does not expose the user to financial hardships.

Apart from Kansal, two law students of SRM University, Haryana, are the co-petitioners in the case.   The Centre, and all the States and Union Territories are the respondents.

During the last hearing on September 22, senior counsel, R.S.Suri appeared for the petitioner.  Additional Solicitor General, Tushar Mehta represented the Centre.

The matter is listed for hearing before the bench of the Chief Justice on Monday, October 23, item no. 18.