Hematologists and hemophiliacs urged India's drug regulator to be more sensitive to their needs and quickly clear the import of medicines donated from abroad.
"DCGI (Drugs Controller General of India) is not clearing the import of factor (injections) donations we are receiving from the World Federation of Hemophilia (WFH). If this continues, in another 10 days 200 million units will be wasted. We have been facing this difficulty for the past six to seven years," S.S. Roy Choudhury, chief executive officer of Hemophilia Federation of India said at an event here on World Hemophilia Day, April 17.
He said the matter was extremely serious and immediate action was required to set things right, adding that donations propel expensive hemophilia care which poor patients cannot afford in India.
Hematologists, hemophiliacs, relatives and others assembled at the Initiative on Hemophilia Care at the India Habitat Centre from across the country urged the central government to produce hemophilia medicines and set up coagulations centers and bleeding disorder facilities in each and every hospital across the country.
They also said that centralized procurement of hemophilia medicines by the government helps in reducing the price for the expensive treatment.
Manoj Jhalani, joint secretary, ministry of health and family welfare, said the issues would be addressed.
"We will certainly take it up on priority," said Jhalani assuring that the assistance from World Federation of Hemophilia should not go waste.
But he said that hemophilia is not as big a public health challenge as diseases like TB, AIDS, cancer and others. "Hemophilia falls lower in terms of public health challenge."
Incidence of hemophilia is 1:10,000 in India and there are an estimated 120,000 patients. The stakeholders reiterated that numbers must not be considered as the disease is very serious in nature.
BJP MP Meenakshi Lekhi, however, said that she would champion in parliament the cause of hemophilia patients like she highlighted and helped thalassemia patients.
"The humanity which is born with this disorder (hemophilia) needs to be taken care of," said Lekhi. "I will ensure that the message reaches where it has to go." She said India needs to do work and combine the curative system and preventive system in hemophilia care on the lines of Ayush.