The Organisation of Rare Diseases of India (ORDI) now argues that the Union government would need to simplify the documentation process for all imported medicines that are free from customs duties. A recent announcement from the Union government allowed complete exemption from basic customs duty for all medications and commodities imported for personal use to cure all unusual diseases.
According to Prasanna Shirol, co-founder and executive director of ORDI, this has greatly relieved the suffering of those who suffer from rare diseases. Even if just 5% of rare diseases can be treated, the majority of those treatments are not offered in India since so few of them are promoted there. In this way, lowering the cost of imported medications benefits certain people with rare diseases who must struggle financially to import them. Also, it will undoubtedly benefit parents who can afford expensive medical care, those who receive free medication through a charitable access programme, and those receiving supportive care.
A prompt change in dietary habits can be lifesaving in illnesses caused by Inborn Errors of Metabolism (IEM), thus adding the food for special medical purposes is crucial and addresses these concerns. We ask the government to place all necessary documentation samples on a single website and offer a process flowchart to help people navigate the paperwork, to take advantage of this new government directive, but also to ensure easy access and avoid the burdensome paper work that is typically encountered when sourcing imported medicines. Shirol remarked.
All customs offices in India also need to be made very aware of and knowledgeable about this. According to him, this is a crucial component for the easy and hassle-free release of medications imported by patients and carers. Also, we ask the government to encourage domestic production of Inborn Error Metabolism nutritional supplements and therapies, as this is the only method to assist many underprivileged individuals with rare diseases. In order to understand the needs of the pharmaceutical and biotechnology firms working with orphan designated products and to encourage them to submit a market authorization application in India, Shirol suggested that we also ask the government to host a round table with all of these companies. In contrast to India, where 70 million people are expected to be affected by uncommon diseases, 35 lakh people in the state of Karnataka are thought to be affected, or 6% of the total population.
