There's need for state policy intervention for rare diseases: Experts

The National Policy for Treatment of Rare Diseases is a welcome and encouraging step. However, experts emphasise on the need for individual state policies for better treatment and diagnosis of rare diseases.

Rare diseases are those which affect a small population and are usually chronic, progressive and debilitating. To add to the burden, there are limited treatment options available which makes them expensive and unaffordable for most of the patients. To counter these challenges, thus, a comprehensive policy is essential and more so at the state level since health is a state subject.

"Implementing a state policy for rare diseases is essential and now most of the states are sensitive to this issue. Rajasthan and Karnataka have taken a step in this direction and have drafted a policy proposal for appropriate diagnosis and treatment of rare diseases and it is only a matter of time before it gets accepted," said Dr. Rashmi Kumar, Professor & Head, Department of Pediatrics, King George Medical University.

Adding, "One of the major aspects that need to be covered through the policy is education of medical professionals so that they are able to timely diagnose a rare diseases. Furthermore, partnering with charity institutions is also equally important. The underlying point is that all the resources in the country need to be optimally utilised for diagnostic facilities which can help in cutting down the cost of diagnosis."

Further emphasising on the need for a state policy for rare diseases Dr. Sujatha Jegadeesh, Chennai, HOD, Dept. of Clinical Genetics, Mediscan, said, "Although it will take some time for the National Policy for Treatment of Rare Diseases to be implemented, it is a very positive step forward. Rare diseases might afflict only a small number of people but given the population of the country, the number is quite significant. This is why due consideration needs to be given to rare diseases and their treatment. A state level policy for this would be the most appropriate in this regard."

A comprehensive policy can make the diagnosis and treatment procedure simpler is much needed. The National policy that has been approved by the MoH&FW is robust and covers all the important aspects of rare diseases. The individual state policies can also take the outline from this and draft the proposals.

One of the most important aspects of National policy is the recommendation of setting up a Rs. 100 crore corpus fund by the centre and state governments. What is required now is the immediate allocation of this fund in this financial year so that it doesn't get lapse and also that the treatment process of the patients does not take a back seat.

Elaborating on it, Manjit Singh (President, Lysosomal Storage Disorders Support Society (LSDSS)) says, "The need of the hour is for the governments to start the process of setting this fund in order to provide immediate relief to the patients. Efforts can be made to form a separate account in the MoH&FW itself which can be supervised by a Secretary or a dedicated committee as suggested by High Court of Delhi."

Adding, "This committee can then have the authority to make the relevant decisions. A committee which can include officials from medical and finance departments would ease the process of monitoring and allocating requisite funds to a principal government hospital like AIIMS which can further the treatment process for patients.