A recent pop-up cafe in Dublin allowed customers to experience what it’s like to live with multiple sclerosis (MS) to highlight the urgent need for improved access to care and treatment for MS patients in Ireland.
MSunderstood Café gave customers a small taste of the challenges and symptoms MS patients face every day. Patients with the disease helped create the simulated environment to ensure all aspects of the café were as authentic to their lives as possible.
Everything in the MSunderstood Café was designed to create a challenging experience, giving customers a unique insight into what it’s like to live with the condition. The menu boards would become blurry, and furniture would either move unexpectedly or be very heavy and difficult to handle.
“By opening the doors to the MSunderstood Café, we hope we have helped customers understand the reality of living with MS, and realize how crucial speedy access to treatment is for people with MS,” Ava Battles, CEO of the Multiple Sclerosis Society of Ireland, said in an MS Ireland news story.
“MS Ireland believes that people with MS should have access to the right treatment at the right time. This may seem like a very basic demand, and one that it would be hard to refuse, but the truth is that this is not the situation for many people in Ireland today,” she said.
According to new research released the same day the café opened, 84 percent of adults believe it is unacceptable that patients in Ireland have worse access to new and innovative medicines than patients in any other Western European country.
More than 1 in 10 adults surveyed (11 percent) claimed they, or someone in their family, had been unable to access medicines due to delays. More than 8 out of 10 adults (84 percent) believe that if a new therapy can improve someone’s quality of life, or extend their life, it should be made available.
In a partnership with Roche, MS Ireland is now calling for change and demanding that the Irish government take action to improve the market access system. To help demand quicker and better access to medicines, a new website was also launched called PatientsDeserveBetter.ie, where people can find more information about the issue, as well as steps they can take to make their voices heard.
“People with MS deserve quick access to medicine, yet in Ireland we face the worst access delays in Western Europe. The solution is a system similar to Germany’s where people with MS get access to medicines as soon as they are authorized by the European Commission. By working together we can improve the current access system and ensure everyone gets the treatment they need,” said Pierre-Alain Delley, general manager of Roche Products.
MS is the most common neurological disease of young adults in Ireland, with three times more women than men estimated to have the condition.
Check out the video below to see people’s reactions to the MSunderstood Café: