Parents of children affected with thalassemia in Telangana have hit back at a new policy reducing health benefits for families battling the disease.
Thalassemia is a genetically inherited blood disorder. With between 10,000 and 12,000 children are born with the disease every year, India is believed to be home to forty million people who l test positive for thalassemia. Every year, the disorder kills 100,000 people before the age of twenty.
What drives this staggering number of premature deaths from the condition is a combination of limited awareness of the disease and lack of access to treatment. It this reality that makes the policy in Telangana concerning.
Under the state government’s Aarogyasri scheme, thalassemic patients and their families were earlier covered for Rs 15,000 worth of treatments including blood transfusions. The state government has now revised the five-year-old policy, and cut the entitlement for thalassemia patients to just Rs 4,600.
The move has incensed activists, doctors, and patients. “In some cases, patients living in districts are required to travel for treatment,” said Aleem Baig, joint secretary of the Thalassemia and Sickle Cell Society. “The new policy increases the financial burden on the patients, hence, it must be revoked and replaced with the previous policy which allowed for a relatively better compensation.”
A group of parents of thalassemic children addressed the media to protest the decision. One parent, Mohammed Ameen, noted that medical costs for a thalassemic child can include up to Rs 25,000 per month for treatment and check-ups, as well as up to Rs 30,000 for vital equipment such as a pump required for treatment. When also considering expenses such as travel costs as highlighted above, it is clear how the absence of financial support from the state government will be felt. This will be especially true of low-income families who account for fifty percent of Telangana’s thalassemia burden.