Over 200 parents from 26 states gathered at Jantar Mantar on Wednesday, demanding urgent access to life-saving medicines for their children suffering from Duchenne Muscular Dystrophy (DMD) and other forms of Muscular Dystrophy. The protest highlighted the plight of Indian DMD patients who are unable to afford critical treatments due to their exorbitant costs.
Demand for Affordable DMD Treatment
Duchenne Muscular Dystrophy is a severe genetic disorder that causes progressive muscle degeneration due to the lack of dystrophin, a protein essential for muscle health. Symptoms often appear as early as age two or three, with mobility deteriorating over time.
One of the key demands raised during the protest was access to Elevidys, a one-time gene therapy treatment that has the potential to significantly extend lifespan and improve the quality of life for DMD patients. Parents also pointed out that several treatments approved in foreign countries could help improve mobility and overall health, but they remain inaccessible in India due to their high prices.
Call for Domestic Production of DMD Medicines
The protestors urged the Indian government to develop and manufacture DMD treatments domestically, similar to how Covishield was developed for COVID-19. They emphasized that India’s advanced pharmaceutical industry could drastically reduce costs and make these life-saving treatments accessible to thousands of children.
Their key demands include:
- Domestic production of DMD medicines to make them affordable for Indian patients.
- Initiation of clinical trials for home-based therapies to ensure accessibility.
- Establishment of specialized caregiving facilities or hospices across the country to provide physiotherapy and slow disease progression.
Concerns Over Crowdfunding and Awareness
The parents also raised concerns about the lack of sufficient crowdfunding for rare disease treatments. They urged the government to actively promote the existing rare genetic disease portal and use social media and public campaigns to increase awareness and donations.
Support from Celebrities and Influencers
The awareness event 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. Sharma, a cerebral palsy warrior, shared his personal journey, inspiring children to stay strong despite their challenges.
Sources By Agencies