NEW DELHI: The Supreme Court on Friday issued notice to the Union government on a plea for providing comprehensive financial and other supports, including free and timely treatment, to the children afflicted with all categories of rare disease of muscular dystrophy.
A bench of Chief Justice of India D Y Chandrachud and Justices J B Pardiwala and Manoj Misra sought a response from the Centre within four weeks on the petition filed by Ratnesh Kumar Jigyasu and others.
On behalf of the petitioners, Advocate Utsav Singh Bains submitted that there was no provision for financial assistance to the patients placed under category two and three of the disease, though those falling under category one would get Rs 50 lakh as relief.
Agreeing to examine the matter, the bench directed Additional Solicitor General Aishwarya Bhati to assist the court.
The petitioners submitted a large number of children die every year due to the rare muscular dystrophy disease.
"The National Policy of Rare Diseases has not reached, many patients inasmuch as the cost of the treatment is still very high and runs into several crores for one patient and remains out of reach of a common man like the petitioners. Unfortunately some of the parents have more than one child suffering from the disease which has further added their grievances," their plea said.
The petitioners said the cost of the treatment of the disease is very high but depending on the type and advancement of the disease, the cost of the treatment can vary widely.
"Procedures like tracheostomy and ventilation are more expensive. Though in the initial stages, only medication and physical therapy are required. However, in advanced cases, genetic therapy is necessary, they said.
"This treatment is prohibitively expensive, as the medicines are imported from Europe or USA. The current therapeutic options available to treat the disease are minimal and highly expensive treatment with costs shooting up to Rs 2-3 crore per child a year and are mostly imported from abroad, accelerating dosing costs and putting them out of reach for the most families," they said.
The petitioners sought a direction to declare the muscular dystrophy as "Special Categories Rare Disease" instead of "Rare Disease" and commence a national programme for treatment of children suffering with it by spreading awareness about the disease and to educate public at large.
They also sought order to the governments to take steps to conduct Gene Therapy Centre in every state capital and union territories free of cost and enhance the financial support under the National Policy for Rare Diseases, 2011 to a realistic figure.
The plea said in India, there are about 5 lakhs such patients.
"But due to lack of awareness, lack of testing facilities, no clinical trials of the drugs and high cost of treatment the petitioners and other unfortunate parents are helpless and have to be mute spectators sadly witnessing their children die each day and an untimely death as well. The petitioners are running from pillar to posts and are approaching every possible authorities but all their efforts are in vain," it said.
The petitioners also stated the right to health is a fundamental right enshrined under Article 21 of the constitution of India, therefore it is the duty of the state to provide complete and proper treatment to the children suffering from rare disease.
"Further the Right to health is not only included in the fundamental right but the same is considered to be of extreme importance under the Part IV of the constitution of India under the Directive Principles of State Policy. The inclusion of the same under the ambit of Directive Principles of State Policy does make the Right to Health amenability disposed to the State. Therefore it is the duty of the Respondents to provide complete, timely and free treatment to the children of the Petitioners," the plea said.
