‘Provide job security for thalassemia patients’: Thalassemia Advocacy Group to health minister

Thalassemia Patient Advocacy Group (TAPG) has written to health minister JP Nadda making key recommendations for thalassemia patients. In a letter to union health minister, the TAPG has urged to provide job guarantee under the RPWD Act 2016 to thalassemia patients.

“As an inherited blood disorder, thalassemia requires continuous medical attention and a comprehensive healthcare strategy to manage and mitigate its impact. Despite advancements in medical science and initiatives being undertaken to manage it, many thalassemia patients still face challenges due to a lack of awareness, timely diagnosis, and adequate treatment facilities”, said TAPG.

The TAPG said “Thalassemia is recognised as a disability under the law. However, job reservations are still not applicable to thalassemia patients. We request the government provide job reservations for thalassemia patients so they can contribute to nation-building”.

The Thalassemia Patient Advocacy Group has asked the gold standard Nucleic Acid Test (NAT) must be mandated across India to prevent mortality in thalassemia patients from transfusion-transmitted infections like HIV and HCV.

Highlighting that India is the thalassemia capital of the world, the TAPG has said that like the national-level elimination programmeme for sickle cell anaemia, there must be a national thalassemia control programmeme.

“Gene therapy for thalassemia is a reality today in countries like the US. As India is the pharmacy of the world, research in the area of gene therapy must be expedited, and thalassemia patients in India must get access to an affordable cure in the form of gene therapy”, the TAPG has recommended in the letter.