Hyderabad: The Indian Organisation for Rare Disease (IORD) has asked the Telangana government to expand beneficiaries under Arogya Sree to support rare disease treatments. According to reports, there are around 20 lakh people in Telangana suffering from rare diseases.

Some of the rare diseases are cystic fibrosis, thalassemia, haemophilia, and Lou Gehrig’s disease. The IORD said pharmaceutical companies do not produce many orphan drugs required to treat these diseases because they are rare and only a few people suffer from these diseases. Hence, the prices of these drugs are high making it unaffordable for many. The organisation has asked the Telangana government to provide subsidies to pharmaceutical companies who are willing to produce orphan drugs.

In 2019, the ministry of health and family affairs drafted a national health care policy for rare diseases and said that incentives will be provided to invent new orphan drugs. But this policy is not applicable to generic drug manufacturers. So the IORD, in association with Bulk Drug Manufacturers Association India (BDMA), submitted a proposal to the pharmaceutical industry asking them to encourage generic drug companies to manufacture orphan drugs.

The IORD has called for the implementation of the Gujarat model of prevention of sickle cell anemia. It said many other monogenetic disorders can be prevented in a similar way. The organisation said that for a country like India prevention is better since it opens up opportunities for biotechnology industries, genetic education, and diagnostic areas, thus boosting the pharmaceutical industry. The IORD hoped these issues will be addressed by the government on 29 February, world rare disease day. The theme of this year is awareness and prevention of rare diseases.

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