Parents of children with Duchenne protest as minister faces parliament questioning

Parents of children diagnosed with Duchenne muscular dystrophy held a protest outside parliament as Health Minister Mikheil Sarjveladze was being questioned under interpellation procedures.

Demonstrators accused the minister of misleading the public, saying his statements about the effectiveness of medication do not reflect the reality faced by patients and their families.

Some parents criticised remarks attributed to the minister suggesting that treatment may delay disease progression by only a limited number of years. They described such claims as “shameful” and argued that even a delay in the loss of mobility is critically important.

“How can he say the medicine only delays the need for a wheelchair by three years?” one parent said. “That is exactly why we are asking for access - to slow the progression. Once a child ends up in a wheelchair, complications begin.”

Duchenne muscular dystrophy is a rare, progressive condition that leads to severe muscle degeneration, with patients gradually losing the ability to walk and later experiencing life-threatening complications.