The Indian Union Health Ministry granted the sale of generic medicines for four rare diseases in November 2023.
These generic medicines are used to treat four rare diseases. They are Wilson’s disease, Gaucher’s disease, Tyrosinemia Type 1, and Dravet-Lennox-Gastaut syndrome. The medicines for these rare diseases were previously sold for 18 to 36 million INR annually, which is equivalent to 0.22 to 0.44 million USD. However, after the approval of generic medicines, the costs are reduced by 100 times, and these medicines are now sold at INR 0.3–0.6 million annually,which is 0.0037–0.0073 million USD.
The Union Health Ministry of India also plans to release medications for hyperammonemia and phenylketonuria in the next few months, which are also known to be rare illnesses.
The National Program for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases, and Stroke (NPCDCS) recently launched the LivAlert campaign on Non-Alcoholic Fatty Liver Disease and Non-Alcoholic Steatohepatitis (NASH) to raise awareness about these diseases.
The annual growth rate of Wilson's disease prevalent in India is expected to increase from 53,988 in 2023 to 55,150 in 2030, which denotes a 0.36% rise in the prevalence of the disease, and India has diagnosed the highest number of cases of Wilson’s disease prevalence next to China, according to GlobalData.
Pharma Analyst Jithendra Kancharla commented that rare diseases affect a smaller number of individuals in a population and are often overlooked, which causes a silent struggle in diagnosing and treating the rare conditions. The National Policy for Rare Diseases in 2021 established eight centers of excellence to diagnose and treat rare diseases. However, this healthcare issue still persists in India despite these initiatives. He also said that creating awareness about rare diseases in India is a challenge and requires the support of the government, healthcare professionals, the media, and patient advocacy groups. Most notably, it requires research institutes, pharmaceutical companies, and global rare disease networks to collaborate with each other to gain experience at the international level.
He added that pharma companies play a major role in raising awareness about rare diseases, as they are resourceful and should focus on improving diagnostic facilities in rural areas for diagnosing rare diseases earlier.
(Input from various sources)
(Rehash/ Rohini Devi)
