This week, local activists from Joining Jack had face-to-face time with some of the most powerful people in healthcare in Britain, during a parliamentary event that was being hosted by Duchenne UK.
Joining Jack is a charity based in the borough that promotes and funds research into the study and cure of Duchenne Muscular Dystrophy had a 45-minute face-to-face meeting with the Secretary of State for Health, the Rt Hon Wes Streeting MP. In the meeting, they discussed the challenges the Duchenne community is facing right now.
Wes was there, attending an event hosted by Duchenne UK to promote its ‘Time Is Muscle” campaign.
Last month the Medicines and Healthcare products Regulatory Agency (MHRA) approved a new treatment for Duchenne muscular dystrophy (DMD) called givinostat. The company making givinostat is, right now, offering the drug for free to patients until the National Institute for Health and Care Excellence (NICE) reviews it in May.
However, hospitals are struggling to deliver, and this is a blow to patients that know there is a treatment available right now to treat a disease where every day counts. Yet they can’t access it because hospitals lack capacity. Joining Jack asked Wes Streeting to help – and he said yes.
Jo Platt, MP for Leigh and Atherton, said: “This shows the power of having drop-in events in Parliament. This is a resounding result for one of our boroughs charities.