Has India done anything so far on a national policy for the treatment of rare diseases? How much attention has been given to these diseases in any government schemes?
bio chat
Awareness of rare diseases is low in India as it is in other parts of the world. There is a dire need to create awareness of the importance of timely and appropriate diagnosis
of these conditions amongst the medical community. This needs to be further supported with adequate means of diagnosis for rare diseases. Most importantly, it is imperative that therapies should be accessible to patients. The core commitment y of all stakeholders should lie in making a concerted effort to nurture an ecosystem that supports patients with rare diseases and to ensure these specialized conditions get timely treatment.
We understand that there is a fair level of awareness across the country of some rare conditions like haemophilia. Various efforts by the medical community, government, patient bodies and healthcare companies have been instrumental in driving this awareness. The collective efforts of various stakeholders have enabled a holistic approach to addressing the disease. There has been an increase in funding for the treatment of haemophilia around the country; from three states provided funding 10 years ago, to more than 21 states today today. The Government has also been very supportive in ensuring that the patients do not suffer from lack of access to clotting factors.
Has India done anything so far on a national policy for the treatment of rare diseases? How much attention has been given to these diseases in any government schemes?
So far, the government has approved the first-ever national policy under the auspices of the Ministry of Health( MoHFW) for treatment of rare diseases in India. The policy will cover rare diseases, their treatment procedures and financial support for eligible patients. This is a welcome step paving a way forward to develop a better understanding on the current environment of rare disease
42 BioVoiceNews | October 2017