The following article is reproduced from a news article by Amrita Didyala, published in Times of India on Wednesday, December 18, 2024, based on the webinar ‘The Global Burden of Rare Diseases: Issues and Challenges’ addressed by Prof. Ramaiah Muthyala at the Federation of Asian Biotech Associations (FABA)-US Chapter.
Hyderabad: Speaking at a webinar on the ‘Global Burden of Rare Diseases,’ professor Ramaiah Muthyala, president and founder of the Hyderabad-based Indian organization for rare diseases (IORD), highlighted the disparities in healthcare access, policy, and the affordability of drugs for rare diseases.
However, he emphasized that exorbitant costs remain a global challenge, citing treatments like Zolgensma, which costs $2.1 million per patient. “India faces even greater challenges, heavily relying on unaffordable imported therapies like Trientine, which costs 1.6 crore yearly. The rare disease ecosystem in India is still developing, with limited diagnostic infrastructure, fragmented policies, and delays in diagnosis ranging from 7 to 20 years,” he said.,” he said.
Prof Muthyala also pointed out saying, “While the national policy for rare diseases (2021) shows promise, only 48.7% of the allocated resources for COEs were utilized between 2021 and 2024. Make in India and 15,000 crore production linked incentive (PLI) scheme have spurred the local production of 450 APIs, helping reduce costs.”
Source: Times of India
