Face to face with the Secretary of State for Health

It’s not every day that patients with a rare disease get to have face to face time with the most powerful person in healthcare in Britain, but that’s exactly what happened this week.

We sat face to face with the Secretary of State for Health, the Rt Hon Wes Streeting MP, for a full 45 minutes to discuss with him the challenges the Duchenne community is facing right now.

Wes was attending an event hosted by Duchenne UK to promote our #TimeisMuscle 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 body blow to patients: KNOWING that there is a treatment available right now to treat a disease where EVERY DAY COUNTS. But we can’t access it because hospitals lack capacity.

So we asked Mr Streeting to help – and he said YES!

Twenty-five MPs also attended the event, along with the Secretary of State for Culture, the Rt Hon Lisa Nandy MP.

Founders of Duchenne UK, Emily Reuben OBE and Alex Johnson OBE said:

“Every time Duchenne UK holds an event something magical happens. This week, thanks to the extraordinary power of Eli, Jack and Benjamin, we got a commitment from the most powerful person in healthcare in the UK to help our campaign to ensure access to a new treatment and to not let small challenges get in our way.

“We want to say a huge thank you to all the MPs who came and compassionately listened to our asks, and a big thank you to all the Duchenne families who wrote to their MPs and those who came to the Commons to support us.”

The fight continues ... stay tuned for updates.