The panellists at Pharmexcil’s 10th annual meet held recently in Hyderabad have proposed to set up a resource group to identify at least 20 rare and neglected diseases in India and accordingly collect data and set up a network of laboratories for research and development of new drugs for rare and neglected disease in the country.

During their discussion on drugs for rare diseases, the panel coordinator JV Gupta had asked the panellist as to what is the immediate solution to address the issue of orphan drugs and rare diseases in India. Because, as most of the pharma companies in the country are developing generic drugs for the larger section of population and as they are unwilling to risk their investment on products that are not of profit, the coordinator asked the panellist to come out with at least one significant step ahead to address this issue.

Reacting to this, the panel member Dr Dinesh Kumar, president of pharmacology society, proposed to set up a resource group which will include members from industry, regulators, patent advisors and doctors who will all be involved in identifying at least 20 important rare diseases impacting the larger section of population and accordingly send the data to the health ministry for its approval for funding the research and development of orphan drugs for such diseases.

The 6-member panellists who included Dr Ramaiah Muthyala, associate professor, department of experimental and clinical pharmacology at University of Minnesota USA; Dr Bhagirath Patel, from Indian Pharmacological Society; B Dinesh Kumar president of Indian Pharmacological society; Dr Jyotish Patel, a paediatrics and a Sickle cell expert; J V Gupta of GVK; and Dr Bikas, a non-clinical pharmacologists from Chandigarh,  have not only discussed the various issues prevailing in India with regard to rare diseases and orphan drugs, they have also proposed solutions for the same and as an initial step they have agreed to set up a resources group on the same.

After more discussions and brainstorming on the prevailing situation, they have also agreed to present a white paper on the rare diseases and accordingly urge the government to set up new regulations or if needed modify the existing regulations to accommodate the industry and help it financially by funding the research and development of rare drugs for the neglected diseases in the country.  

Earlier, in presentation on the situation of rare diseases in India, Dr Marlene Haffner from USA said that it is right time that India needs to focus on discovery of new drugs for rare and neglected diseases. In her presentation she said India needs to promote drug development and also redefine its laws with regard to IP protection, in order to encourage new research in this direction.

According to reports, India has the burden of 21 per cent global diseases in the world. As about 80-84 per cent of healthcare spending is done by individuals from their pockets, it is high time that the government come out with new healthcare policies and enhance the healthcare spending, which will in turn encourage industry to not only address the existing diseases but the industry will also be encouraged to explore the unexplored disease and develop new drugs.