Giving a ray of hope to lakhs of people with hemophilia, Chemicals and Fertilisers and Pharmaceuticals Minister Ananth Kumar on Monday pitched in for affordable drugs and better treatment for the patients.
At an event organised by the Hemophilia Federation of India here, Kumar proposed a meeting of all the stakeholders including the Pharma Department, National Pharmaceutical Pricing Authority (NPPA) and Health Ministry to discuss the issues confronting the sector and move forward.
He also proposed taking up research related to the hemophilia in one of the National Institute of Pharmaceutical Education and Research (NIPER) under his Ministry being planned in more States in the country.
The Cabinet Minister also suggested taking up the issue of the factor concentrate (given to prevent bleeding) in the Government’s national plan.
At the event, earlier Meenakshi lekhi, lok Sabha MP said, “We are trying to get Hemophilia patients for getting sanctioned for benchmark disability or under a special category of disability.” She also proposed launching a project investigating bleeding orders in women.
Dr Kanjaksha Ghosh, President, Hemophilia Federation of India, added, “We need to address the issue at a national level and thus, we would request Government intervention at a macro level by means of funding, expanding infrastructural support, making free factors available and building trained workforce to control blood related disorders including Hemophilia”.
Hemophilia is a genetic and life-threatening bleeding disorder. Even with a minor injury or cut, in hemophilia patients’ blood does not clot normally due to the absence of clotting proteins called Anti Hemophilia Factors (AHF).
If not taken care, recurrent and prolonged bleeding into joints and muscles can lead to permanent disability and bleeding from the sensitive organs can lead even to death. The only possible treatment is infusion of life saving drugs called AHF, which is costly and not readily available in the country.