Malerkotla: Parents of kids suffering from rare disease seek nod for mercy killing

Mahesh Sharma

Malerkotla, June 27

Having failed to draw attention of the Central Government towards the treatment of a rare genetic disorder — Duchenne Muscular Dystrophy (DMD) — by organising dharnas at Jantar Mantar and India Gate, parents of affected children have sought permission for mercy killing.

The authorities at Malerkotla Civil Hospital showed ignorance about the treatment available for such patients.

SMO Dr Jagjit Singh said, “We don’t have any protocol for registration of such patients. However, a disability certificate is issued when affected parents approach us.”

“In case the government can’t provide proper treatment to our kids, then give us the right to commit suicide along with our children. We can’t see them dying in front of our eyes,” reads a communiqué written by Ajay Garg, whose 11-year-old son suffers from the DMD.

Garg, who is a state coordinator of the DMD Association, said like hundreds of other parents, he took his son to multi-specialty hospitals and research institutes for treatment but to no avail.

“All medical and research institutes refused to register my son. They argued that treatment cost would run into crores. The first gene therapy for DMD costs US $ 3.2 million,” said Garg, adding that the successive governments had failed to invest in health sector.

Though health insurance policies do not cover rare diseases, financial assistance up to Rs 50 lakh is granted under the Rashtriya Arogya Nidhi.

Dr Varinder Jain, vice-chairman, Seva Trust, UK, acknowledged that parents of kids suffering from the DMD had failed to draw attention of the government towards their plights.

“We are in touch with around 100 affected families, which are availing ayurvedic treatment. Most of them are finding it difficult to take care of their wards,” said Jain.

Showing concern over tendency to seek permission for mercy killing, Jain said the governments should immediately draft a policy to make one-time treatment available for this genetic disorder.

The affected parents said they would submit memorandums to the MPs asking them to take up the issue in Parliament.

Treatment runs into crores

In case the government can’t provide proper treatment to our kids, then give us the right to commit suicide along with our children. All institutes refused to register my 11-year-old son. They argued that treatment cost would run into crores. The first gene therapy for DMD costs US $ 3.2 million. — Ajay Garg, affected parent