Govt to aid financially people suffering with ‘rare’ diseases

Panel formed; Centre, State to bear cost in 60:40 ratio

JAMMU: Taking a holistic view of the sufferings of people ailing with rare kind of diseases, especially those who are poor and can’t afford treatment for themselves owing to heavy costs, the State Government has resolved to provide some financial assistance to them.

In this regard, the Government has constituted a State level Committee headed by Principal Secretary to Government, Health & Medical Education Department, which will comprise of Members including Principals of Government Medical College (GMC) Jammu and Srinagar; Mission Director, National Health Mission (NHM), J&K; Directors of Health Services Jammu and Kashmir; Director, Finance, Health & Medical Education, who will be Member Secretary of the Committee and Head of Department of Pediatrics, who has to be nominated from both the Divisions of the State including premiere Sher-e-Kashmir Institute of Medical Sciences (SKIMS), Soura, Kashmir.

According to official sources, the concerned Chief Medical Officers (CMOs) of all the districts of the State have been asked to scrutinize the cases of rare diseases and forward the same to the General Administrative Department (GAD) through Directors of Health Services Jammu and Kashmir for their further submission to the Union Ministry of Health & Family Welfare for consideration of the identified cases under National Rare Disease Policy (NRDP).

It’s worthwhile to mention here that under the NRDP, the Centre Government has allocated funds to the tune of Rs. 100 Crore towards genetic disorders. Under this policy, the Centre Government will contribute 60% towards spending on the treatment of the patient while the State Government will have to bear the remaining 40% of the cost.

The Government has apparently taken this decision in response to a recent incident took place at Arai Malika village in border district of Poonch, where reportedly every fourth person is suffering from a physical disability and nearly 90 of them are stated to be completely bedridden. The said village has a population of about 2000 only. Despite the fact that the disease has been identified, no concrete action was taken by the concerned authorities to mitigate the sufferings of the hapless villagers, who are living in miserable condition.

Besides, there were reports of many children suffering from a rare type of disorder called Lysosomal Storage Disorder (LSD) in Kashmir valley some time back and all of them were yearning for proper medical treatment as they didn’t get any medical assistance due to delay in launch of a Centrally Sponsored Scheme “Rashtriya Bal Swasthya Karyakaram” (RBSK) under National Health Mission (NHM) in Kashmir, which is mainly meant for the children suffering from rare diseases.

It may be mentioned here that disorders like Thalassemia, Hemophilia, Spinal Muscular Atrophy, Duchenne Muscular Dystrophy, Fragile-X, Inborn Errors of Metabolism and Lysosomal Storage Disorders (LSD) are some frequently encountered genetic disorders, which are considered in the category of rare diseases.

Talking to The News Now, Dr. Samir Mattoo, Director, Health Services, Jammu, who is one of the members of the Committee, said that he didn’t have any information of formation of any such Committee.

However, Principal, Government Medical College (GMC), Jammu, Dr. Sunanda Raina also a member of the said Committee, told The News Now that Committee has been formed with a view to provide some financial relief to the patients suffering with rare diseases.

When asked to give details of the rare diseases covered under the scheme and financial assistance to be provided to such patients, she said, “We have yet to decide all these aspects and this will be done in a meeting to be convened in the days to come.”