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Muscular dystrophy patients carry out protest march in Ambala
The march was carried out under the banner of “Muscular Dystrophy Pariwar Sangh Haryana,” where nearly 100 families joined the march from Football Chowk to Sadar Bazar Chowk in the constituency of health minister Anil Vij
Several parents and their children suffering from a rare disease-- muscular dystrophy-- from all over the state on Monday carried out a protest march in Ambala Cantonment, demanding affordable treatment from the state government.
The march was carried out under the banner of “Muscular Dystrophy Pariwar Sangh Haryana,” where nearly 100 families joined the march from Football Chowk to Sadar Bazar Chowk in the constituency of health minister Anil Vij. A memorandum was also submitted in Vij’s name.
As per the organisation, there are at least 300 families associated with the body who are suffering from this disease across the state. Protests were also carried out simultaneously in various towns in the country, Dinesh Kumar, district co-coordinator of the body said.
“Though the union government has opened 10 centres of excellence in the country, including PGIMER Chandigarh, there is no treatment given, instead the patients are given multivitamins or calcium tablets. We demand affordable availability of treatment in India like in other countries. We can’t see our kids dying in front of our eyes at such a young age,” he added.
Health experts said it is a genetic disorder and the muscles gradually lose their strength leading to complete immobility and dependence on others for daily activities.
In December last year, Vij announced a monthly pension of ₹2,500 for the patients after Ambala MLA Aseem Goel had raised the issue in the assembly.
Vij had said that under the national policy for rare diseases, 2021, financial assistance of up to ₹50 lakh is being provided to patients suffering from rare diseases, including muscular dystrophy for treatment at the centres of excellence.
