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Lack of awareness and diagnosis major obstacle to combating rare diseases in India: Global Data

• By Newsdesk
• New Delhi
• Dec 29, 2023

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In November 2023, the Indian Union Health Ministry granted approval for the sale of four generic medications designed to treat rare diseases. This authorization marks a crucial step forward in addressing the challenges posed by rare diseases in India. Despite this milestone, GlobalData points out that a key hurdle in effectively tackling rare diseases within the country is the lack of awareness and insufficient diagnosis.

The four sanctioned medications are intended for the treatment of Wilson's disease, Gaucher's disease, Tyrosinemia Type I, and Dravet-Lennox Gastaut syndrome. This approval enables patients with rare diseases to avail the therapy at a significantly reduced cost, ranging from INR 0.3 to 0.6 million (US$ 0.0037 to 0.0073 million), which is a hundredfold less than the cost of imported medicines. The Indian Ministry is also set to release medications for other rare illnesses, including hyperammonaemia and phenylketonuria, in the coming months.

Jithendra Kancharla, a Pharma Analyst at GlobalData, emphasized, "Rare diseases, by their nature, affect a small segment of the population. In 2021, the Government of India introduced the National Policy for Rare Diseases (NPRD-2021) to address gaps in combating rare diseases. As part of this initiative, eight centers of excellence for diagnosing and treating rare diseases have been established, along with additional testing centers and financial support for patients undergoing treatment. Despite these efforts, rare diseases remain a significant healthcare challenge in India."

The recent introduction of LivAlert by the National Program for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases, and Stroke (NPCDCS) to raise awareness about Non-Alcoholic Fatty Liver Disease (NAFLD) and Non-Alcoholic Steatohepatitis (NASH) exemplifies an effective campaign to enhance disease awareness.

According to Jithendra, "Enhancing awareness of rare diseases in India is a complex challenge that necessitates collaborative efforts from various stakeholders, including the government, healthcare professionals, patient advocacy groups, and the media. Importantly, collaboration with research institutes, pharmaceutical companies, and global rare disease networks is essential to draw insights from international experiences."

"Major pharmaceutical companies, owing to their resources and influence, have a pivotal role in promoting awareness of rare diseases. Additionally, there should be a focus on improving diagnostic facilities, especially in rural and underserved areas, to facilitate the early detection of rare diseases," added Kancharla.