New Delhi: Over 200 parents from 26 states across India protested at Jantar Mantar on Wednesday with their children affected by Duchenne Muscular Dystrophy (DMD) and Muscular Dystrophy (MD), demanding urgent access to life-saving medicines, a statement read from the protestors read. The demonstration highlighted the dire situation of Indian DMD patients, who are unable to access critical treatments due to their exorbitant costs, the statement said.
Duchenne Muscular Dystrophy (DMD) is a genetic disorder characterised by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact. Muscle weakness is the principal symptom of DMD. It can begin as early as age 2 or 3, first affecting the proximal muscles (those close to the core of the body) and later affecting the distal limb muscles (those close to the extremities).
One of the demands raised during the protests was access to ‘Elevidys’, a one-time gene therapy treatment that has the potential to significantly improve lifespan and quality of life for DMD patients, it stated.
It further mentioned that the parents also suggested some treatments that are approved in foreign countries stating that they could extend lives, improve mobility and enhance overall health, yet they remain inaccessible due to their high costs.
The protesting parents are demanding that the government develop and manufacture DMD treatments within India, as it did with Covishield for COVID-19.
“Their key demands include domestic production of DMD medicines to make them affordable for Indian patients and the initiation of clinical trials for home-based therapies to ensure accessibility, given India’s advanced pharmaceutical capabilities,” it added.
These measures could drastically reduce costs and make life-saving treatments accessible to thousands of children, it stated.
Parents also suggested the establishment of specialised caregiving facilities or hospices across the country. These centres would provide physiotherapy sessions to maintain mobility and slow disease progression, it stated. Also raising concerns about the lack of sufficient crowdfunding for rare disease treatments.
They urged the government to actively promote the existing government rare genetic disease portal and use social media and public campaigns to increase awareness and donations.
The awareness programme was attended by former Miss India, Srishti Rana, former Miss Universe India Maduri Patle and RJ Pulkit Sharma who stood in solidarity with the parents and children, urging the government to act.
Sharma, a cerebral palsy warrior, inspired the children by sharing his journey and encouraging them to stay strong despite their challenges, it added.
