Lack of awareness, diagnosis hampers India's fight against rare diseases: Report

A major obstacle to effectively combating rare diseases in India is the lack of awareness and inadequate diagnosis in the country according to a report on FridayIn November 2023 the Union Health Ministry authorised the sale of four generic medications for the treatment of rare diseases This approval was a significant milestone in the fight against rare diseases in India These approved indigenous products along with other products yet to be approved will aid patients suffering from rare diseasesHowever low awareness and diagnosis is a matter of concern revealed the report by GlobalData a data and analytics companyThe four approved medications are used to treat Wilsons disease Gauchers disease Tyrosinemia Type I and DravetLennox Gastaut syndromeEarlier these therapies were imported to India and would cost Rs 1836 million US 022 044 million for annual treatment of Gauchers disease aloneWith this approval patients with rare diseases can now access the therapy at a significantly reduced cost of Rs 0306 million US 00037 00073 million which is 100 times less than the imported medicinesOver the next few months the health ministry will also be releasing medications for additional rare illnesses such as hyperammonaemia and phenylketonurialdquoRare diseases by definition afflict a small number of individuals in a population In the vast population of India rare diseases are often overlooked and a silent struggle persists surrounding the diagnosis and treatment of rare diseases said Jithendra Kancharla Pharma Analyst at GlobalData in a statementIn 2021 the government of India put forward the National Policy for Rare Diseases NPRD2021 to work on the lapses in fighting rare diseases As a part of it eight centres of excellence for the diagnosis and treatment of rare diseases are established along with additional testing centres and financial support for patients undergoing treatmentDespite these initiatives rare diseases continue to be a pressing healthcare issue in India Kancharla saidAccording to GlobalDatarsquos Pharmaceutical Intelligence Center the number of 10year diagnosed prevalent cases of Wilsonrsquos disease in India is expected to increase at an annual growth rate AGR of 036 per cent from 53988 in 2023 to 55150 in 2030After China India has the second highest diagnosed prevalent cases among the major markets like Australia Canada China France Germany Italy Japan South Korea Spain the UK and the USRare diseases pose significant challenges due to the scarcity of information limited research and insufficient awareness among healthcare professionals and the publicThe government must step up to create awareness among people and educate healthcare professionals about the symptoms diagnosis and treatment This can be achieved through efficient social media and digital campaignsThe recent launch of LivAlert to promote awareness about NonAlcoholic Fatty Liver Disease NAFLD and NonAlcoholic Steatohepatitis NASH by National Program for Prevention and Control of Cancer Diabetes Cardiovascular Diseases and Stroke NPCDCS is a good example of efficient campaigning to increase disease awarenessldquoImproving rare disease awareness in India is a multifaceted challenge that requires coordinated efforts from various stakeholders including the government healthcare professionals patient advocacy groups and the media Notably collaboration with research institutes pharmaceutical companies and global rare disease networks is necessary to learn from international experiences Kancharla saidldquoBig Pharma companies by virtue of their resources and influence have a significant role to play in promoting rare disease awareness Additionally focus on enhancing diagnostic facilities especially in rural and underserved areas to enable the early detection of rare diseases he addedThis story has been sourced from a third party syndicated feed agencies Midday accepts no responsibility or liability for its dependability trustworthiness reliability and data of the text Midday managementmiddaycom reserves the sole right to alter delete or remove without notice the content in its absolute discretion for any reason whatsoever