Thalassemia Patient Advocacy Group Appeals To Health Minister On World Blood Donor Day

On World Blood Donor Day, the Thalassemia Patient Advocacy Group (TPAG) in a press statement on Friday informed that it has reached out to Union Minister of Health and Family Welfare, J.P. Nadda, through an open letter urging immediate actions to secure access to safe blood and to implement comprehensive strategies for preventing thalassemia in India.

Thalassemia, an inherited blood disorder, is a significant health concern in the country, affecting numerous individuals and families. Despite medical advancements, thalassemia patients continue to face challenges such as lack of awareness, delayed diagnosis, and insufficient treatment facilities.

Anubha Taneja Mukherjee, Member Secretary of TPAG, expressed the group's dedication to advocating for individuals with thalassemia, aiming for a thalassemia-free India. "Our mission is to ensure that all thalassemics are either cured or able to maintain a healthy lifestyle. We support the Government of India’s efforts and look forward to engaging with the Ministry of Health and Family Welfare to improve the lives of thalassemia patients across India. With the health minister's visionary leadership, we can make significant strides in addressing this critical health issue," she stated.

Key Recommendations by TPAG:

1. Access to Safe Blood: To prevent mortality in thalassemia patients from transfusion-transmitted infections like HIV and HCV, TPAG recommends mandating the gold standard Nucleic Acid Test (NAT) across India. Additionally, a consolidated blood law should be established to regulate blood transfusion services.

2. Job Guarantee under RPWD Act 2016: While thalassemia is recognised as a disability under the law, job reservations are not yet applicable to thalassemia patients. TPAG urges the government to provide job reservations to enable thalassemia patients to contribute to nation-building.

3. Parity with Sickle Cell Anaemia Prevention Programme: Given that India has the highest number of thalassemia cases worldwide, TPAG calls for a national thalassemia control programme similar to the national sickle cell anaemia elimination programme.

4. Indigenous Gene Therapy for Complete Cure: Gene therapy for thalassemia is now available in countries like the US. As a global leader in pharmaceuticals, India should expedite research in gene therapy, ensuring affordable access to this cure for Indian patients.

TPAG, alongside thalassemia patients from across the country, has requested a meeting with the minister to discuss their concerns and suggestions in detail, the statement from the group added.