Every country has its own challenge when it comes to addressing the rare disease policy, said Prasanna Kumar B Shirol, co-founder and Executive Director of Organization for Rare Diseases in India (ORDI).
He was commenting on the government of India’s unwillingness to co-host rare disease policy event at UN on February 21 where over 100 participants from the international NGO community, national governments, research institutions and private sector players are teaming up to make rare diseases a global public health priority.
India is making progress as multiple stakeholders are relentlessly working to bring out a policy to take care of Rare Diseases Affected Patients. With new healthcare initiatives and discussions in Q&A session in Lok Sabha by Health Minister sets a positive trend for the rare disease community, Shirol told Pharmabiz in an email.
The policy for rare diseases which was announced in 2017 has undergone changes in past few months, with lot of U turns and corrections. The government is now getting to understand that drafting a rare diseases policy is not as easy as it might seem due to the complexity of the issue as there cannot be a common structure/process for all the rare disease patients. Each patient is unique and the policy needs to be customized according to the requirement of the disease and patient, he said.
“The patient advocacy groups and umbrella organization like ours who represent the rare diseases community in its totality have to be involved and engaged in the policy making. We at ORDI have been constantly providing key inputs to Government bodies to make them understand the issue completely,” said Shirol.
However, the Rare Diseases International has invited Dr. Harsha Rajasimha of ORDI to represent Indian patient’s perspectives at United Nations, New York City on Feb 20 & 21 this year. The global commission to end diagnostic odyssey for children with a rare disease is expected to release their report on the occasion.
On the eve of 5th year of relentless service towards rare diseases community, ORDI is hopeful of a justified and sustainable policy for Rare Diseases Patients in India, said Shirol.