Resource group for rare diseases

It was proposed at Pharmexcil’s annual meet that various members from the pharma industry and doctors would be involved in identifying at least 20 rare diseases

Pharmexcil’s 10th annual meet was held on September 18 and 19 in the city. It was proposed by the panellists of the meet to set up a resource group to identify at least 20 rare and neglected diseases.

Most of the pharmaceutical companies in the country are developing generic drugs for the larger section of the population and are unwilling to risk their investment on products that are not profitable. And for this reason, solutions to address the issue of orphan drugs and rare diseases were discussed.

Panel member Dr Dinesh Kumar, president of pharmacology society, proposed to set up a resource group which would include members from the industry, regulators, patent advisors and doctors, all of whom would 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 panel included Dr Ramaiah Muthyala, associate professor, department of experimental and clinical pharmacology at the University of Minnesota, USA; Dr Bhagirath Patel from the Indian Pharmacological Society; B Dinesh Kumar, president of Indian Pharmacological Society; Dr Jyotish Patel, a paediatrics and a sickle cell expert; JV Gupta of GVK; and Dr Bikas, a non-clinical pharmacologists from Chandigarh.

It was agreed by the panellists 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.

Dr Marlene Haffner said that India needed to focus on discovering new drugs and promote drug development and also redefine its laws with regard to IP protection in order to encourage new research.