Parents of muscle dystrophic patients protest in Delhi, ask for access to high cost treatment The latest India news

New Delhi, over 200 parents from 26 states in India protested on Wednesday at Jantar Manar, with their children affected by Duchenne muscle dystrophy and muscle dystrophy, asking urgent access to life -saving drugs, a statement read by read protesters.

The demonstration highlighted the terrible situation of patients with Indian DMD, who are not able to access critical treatments due to exorbitant costs, the statement said.

Duchenne muscular dystrophy is a genetic disorder characterized by progressive muscle degeneration and weakness due to changes in a protein called dystrophin that helps maintain intact muscle cells. Muscle weakness is the main symptom of DMD. It can start from the age of 2 or 3, first affecting the proximal muscles and later affecting the muscles of the distal limbs.

One of the high requirements during the protests was access to “Studididys”, a unique gene therapy treatment, which has the potential to significantly improve the lifespan and quality of life for DMD patients, said.

In addition, he mentioned that parents have also suggested some treatments that are approved in foreign countries, saying they could prolong life, improve mobility and increase general health, but remain inaccessible due to their high costs.

Protestant parents ask the government to develop and produce DMD treatments in India, as has happened to Covishield for Covid-19.

“Their key requests include domestic production of DMD drugs to make them accessible to Indian patients and initiate clinical studies for home therapies to ensure accessibility, given the advanced pharmaceutical capabilities,” he added.

These measures could drastically reduce costs and make life -saving treatments accessible to thousands of children, he said.

Parents also suggested the establishment of specialized care facilities or hospitals throughout the country. These centers would provide physiotherapy sessions to maintain a slow mobility and evolution of the disease, he said. Also, increasing concerns about the lack of sufficient cryingfund for rare treatments for diseases.

They asked the government to actively promote the rare genetic disease portal and to use social media and public campaigns to increase awareness and donations.

The former Miss India, Sishti Rana, the former Miss Universe India Maduri Patle and RJ Pulkit Sharma, participated in the Program.

Sharma, a warrior of brain paralysis, inspired children by sharing and encouraging them to remain strong despite their challenges, he added.

This item was generated from an automatic news agency flow without changes to the text.