Campaigners demand immediate NHS action for life-saving MND drug | Express Comment | Comment

The ice statue of a woman who lives with motor neuron disease (MND) is to emphasize the destructive reality of access to a drug-saving drug that will be set up on the Parliament Square next week.

The striking installation, which took place on Wednesday, July 17, will have the lifelong ice figure of Seckguirk, a woman with a rarely genetic MND form caused by the SOD1 gene. Despite the advancement of this brutal disease, the presence of a breakthrough drug called Tofersen, which is prevented from taking Seckin and others, is prevented from progression of this brutal disease.

Tofersen is currently provided free of charge while the regulatory approval is provided by the pharmaceutical company. However, campaignists say that some NHS confidence refuses to provide treatment, to show resource and cost concerns and put the bureaucracy effectively in front of their lives.

The campaign, which leads to the MND Association’s prescription life movement, wants to immediately remove these obstacles and brings people like Seckin every day of the delay closer to irreversible decline.

A spokesman for the campaign: “This ice statue is not only art – a visual metaphor for something like living with Mnd and rejection of hope. People are literally wasted in front of our eyes, and the office holds a drug that can give them more time.”

The public demonstration aims to put pressure on health leaders and to raise awareness about the need for fair access to Tofersen among most newly elected deputies and ministers.

Campaigns call on the people and the media to help strengthen the message: MND people don’t have time to wait.