Wigan Joining Jack hero meets and lobbies health secretary

The organisation, inspired by schoolboy Jack Johnson, helped to fund the first approved treatment in the UK for all patients with Duchenne muscular dystrophy (DMD).

The National Institute for Health and Care Excellence (NICE) gave givinostat, also known by the brand name Duvyzat, the nod for use on the NHS last month.

But Jack, his mum Alex with other sufferers of DMD and their families descended on Westminster this week to press the case that the national roll-out since has been far from straightforward.

This has led to the launch of a #TimeisMuscle campaign aimed at getting the treatment to the people who need it, and fast.

They were delighted to spend time with Secretary of State for Health Wes Streeting, explaining the issues, at the end of which he pledged to get things moving.

Another 25 MPs, including Wigan’s Lisa Nandy, Atherton and Leigh’s Jo Platt and former Lib-Dem leader Tim Farron, also dropped in on the House of Commons lobby session.

And the Johnsons left London feeling it had been a very worthwhile trip.

Afterwards they posted: “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”!

Founders of Duchenne UK, Emily Reuben OBE, and Alex Johnson added: “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.”

Since it was established, Joining Jack hhas raised millions of pounds towards funding research into treatments for DMD.