New Delhi, Sep 20 (PTI) The Centre's screening programme to identify people with sickle cell trait carries a serious risk of labelling and stigmatising millions of tribals suffering from the disease, a government-appointed expert committee has said in its report.
Sickle cell trait is one of the two forms of sickle cell disease, which is a group of hereditary blood disorders in which the body makes sickle-shaped red blood cells. The disease gives rise to many chronic health disorders such as stroke, infections and increases the risk of death.
Sickle cell trait is much more common and is often an asymptomatic or a mildly symptomatic condition wherein the person carries the sickle gene and transmits it to the progeny. When the baby receives the sickle gene from both the parents, it is called sickle cell anemia, often a severe disease, the 12-member committee, headed by Magsaysay awardee and rural health expert Dr. Abhay Bang, said.
The committee, which was constituted by the ministries of health and tribal affairs in 2013 to ascertain the status of health and healthcare in tribal areas, said there are two views regarding the sickle cell disease programme.
The first points out that most of the studies on morbidity and mortality due to sickle are hospital-based. The natural history of sickle cell disease in the population and the excess morbidity and mortality it causes are not clearly known.
"This view raises some questions. Do all individuals with the sickle gene need to be labelled, alarmed or treated? This view cautions against the institution of rigorous measures for mass screening for the disease without understanding its implications," the committee said in its report submitted to the government recently.
The second view holds that mass screening and management of sickle cell disease is important to ensure greater life expectancy and quality of life for tribal people, it said.
The government has taken the latter view and started an extensive programme to screen three crore people for the sickle cell trait, under the supervision of the prime minister's office.
"The fact is that while the current system has created a mechanism for screening people with the sickle cell trait, there is no plan of action for people with the disease. Therefore, this committee believes that providing good quality care to people with clinically severe sickle cell anemia must be the first priority," the report read.
"In the absence of evidence of need, the whole programme of mass screening may prove to be a futile exercise of shadow chasing. It also carries a risk of labelling and stigmatizing several million tribal with sickle cell trait," it said.
India has the third highest number of births with sickle cell anemia in the world after Nigeria and DR Congo. The incidence of sickle cell disease (anemia and trait) and thalassemia disorders varies between 1 and 40 per cent of particular tribal communities, according to the report.
In 2014, Prime Minister Narendra Modi had sought Japan's help to combat sickle cell anemia in India and had held discussions it with Japanese stem cell pioneer Shinya Yamanaka, a 2012 Nobel laureate, in this regard in Kyoto. PTI GVS ZMN