Experts call for measures to address thalassemia in India

NEW DELHI

As the World marks the Thalassemia Day on Sunday – a blood disorder characterized by abnormal formation of hemoglobin – experts have raised an alarm that India continues to be a thalassemia capital of the world with 100,000 to 150,000 patients living in the country.

They believe that every year over 10,000 children are diagnosed with the disease and in 25% of cases, it is usually asymptomatic parents, who pass on this disease to their children.

Speaking to Anadolu Agency, microbiologist Priya Vaswani, 28, who was detected with the disease at the age of three said the COVID-19 has hit hard the people infected with thalassemia due to blood shortage and difficulty in accessing healthcare.

Vaswani, who has dedicated her life to helping thalassemic patients urged for providing opportunities to the children infected with the disease in the field of education and career, and providing them jobs to help them grow and prosper.

"Due to the pandemic lockdown and then a large number of people getting infected who couldn't donate blood. The thalassemia community in India faced a lot of problems due to the pandemic. But the things are now improving, it has brought relief to the Thalassemia community," she said.

She noted that it is important to make people aware of thalassemia, and the importance of screening to have a healthy future.

"When I was in 12th grade, I started volunteering with Thalassemia Society in the city of Pune for blood donation camps and different sessions, and gradually got an understanding on how to stop more thalassemia births and the need to spread the message of awareness," she said.

Vaswani said that she has been pleading for introducing the compulsory thalassemia minor testing for all expecting mothers.

"I have been trying to connect to gynecologists. They can do a lot and greatly help in thalassemia prevention by getting the thalassemia test done with all other tests," she added.

Poor families need assistance

She said while some patients have excelled in their fields, many belong to poor families and need assistance.

Stating that the government provides free blood and medicines in the district hospitals of every city, Vaswani said that hassle-free transfusion is a must in many cities.

"This should be introduced soon, also easy access to life-saving medicines and safe nucleic acid testing technology tested blood is a need of an hour for the thalassemia community," she said.

The Thalassemia Patients Advocacy -- a New Delhi-based group -- in a letter recently urged the Health Ministry to issue an advisory to all the states to ensure safe blood and to consider using nucleic acid testing technology in all government hospitals to bring down the risk of infection.

Anubha Taneja of the Thalassemia Patients Advocacy Group told Anadolu Agency that there is a need for a national policy for thalassemia patients.

"There also needs to be a national-level campaign for prevention. We continue to be the capital of thalassemia, which is unacceptable. There needs very special focus on blood safety because we don't have a blood screening standard which is uniform for the country," she said.

She also called for introducing new treatment therapies which are getting approved across the world to reduce patients and a burden on the country’s health system.