Organisation for Rare Disease India (ORDI), a non-profit patient association focusing on improving the health of patients with rare diseases, has taken the initiative to appeal to the state governments to implement individual state rare disease policies as per directions of the national rare disease policy.
The organisation has written letters to the health secretaries, health ministers, chief secretaries and chief ministers of all the 29 states emphasising on the need to expedite the process of providing treatment to rare disease patients by implementing a rare disease policy.
Commenting on rare diseases as a health issue, Prasanna Shirol (Co-Founder & Executive Director, ORDI) said, “Rare diseases are becoming a serious public health challenge. They are often acute and severe and hamper the patients’ daily lives. Majority of the patients suffering from rare diseases are children and they are losing their lives due to various challenges which include delayed diagnosis.”
“Moreover, there are thousands of rare diseases but treatment is available for only some of them. The treatment and supportive care is also beyond the means of most families. Given these issues, we need the governments’ support to promote early, accurate diagnosis and screening programs for rare diseases, including proper rehabilitation and counselling, which can make the patients’ lives less painful,” Shirol added.
Since health is a state issue, it is important for the states to have their individual state policies so that work can start happening at the ground level.
“Recently, the central government finalised the National Policy for Treatment of Rare Diseases and has allocated Rs 100 Crores corpus for the treatment of rare disease patients. Taking guidelines from the national policy, the state governments should come forward to implement this policy at the earliest to provide treatment to patients. We also request the concerned authorities to constitute a State Level Technical Committee (STC) and nominate respective state hospitals for treatments as per National Rare disease Policy implementation guidelines issued by Ministry of Health and family welfare. This would help in proper coordination and help in smoothening the process of providing treatment,” said Shirol.
“The letters are a step from our end to appeal to the state governments to showcase urgency in the matter. There are a lot of patients who are suffering from these disorders and our endeavour is to help the patients lead quality lives. We hope that this initiative of ours would help in making the state governments aware of the various aspects of rare diseases and recognise it as a part of mainstream health discussion.”
ORDI has mentioned that it would be happy to support the various steps taken by the government for the smooth implementation of the policy and bring on-board the specialists who would be providing their expertise in this matter.
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