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Access to treatments

Speaking truth to power: an extraordinary update on our #Time is Muscle campaign

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.

Benjamin James, Emily Reuben OBE (Co-founder and Chief Executive of Duchenne UK), Amanda Hack MP, Chris McDonald MP, Eli Crossley, Wes Streeting MP and Secretary of State for Health and Social Care, Alex Johnson OBE (Co-founder of Duchenne UK and Chief Executive of Joining Jack), Jack Johnson

Eli Crossley, Jack Johnson and Benjamin James sat face to face with the Secretary of State for Health and Social Care, 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 safe and effective 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, Media and Sport, 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.

Thank you to all the MPs who attended:

 

Thank you to all the parents who attended:

Eli Crossley and Jack Johnson talking to the Secretary of State for Culture, Media and Sport, Lisa Nandy MP
James Frith MP, Tony Levene, and Christian Wakeford MP
Caroline Hamnett, Liz Keenan, and Martin Wrigley MP
Andrew George MP and Emily Reuben
Alex Johnson and Lee Barron MP
Benjamin James, Eli Crossley, Jack Johnson, and Tessa Munt MP
Aphra Brandreth MP and Emily Reuben
Alex Johnson and Peter Dowd MP
Clive Efford MP, Jennifer McGovern, and Emily Reuben
Emily Reuben, Eli Crossley, Jennifer McGovern, Laura Wright, Jack Johnson, Alex Johnson, and Lisa Kuhwald
Eli Crossley, Jack Johnson, Alex Johnson, and Liz Twist MP
Eli Crossley, Jim Shannon MP, Alex Johnson, and Jack Johnson
Jo Eames and Kevin Bonavia MP
Alex Johnson, Tim Farron MP, and Emily Reuben
Alex Clarke and Freddie van Mierlo MP
Alex Johnson, Irene Campbell MP, Mhairi Harvey, and Emily Reuben
Dr Vasantha Gowda, Jim Dickson MP, and Rebecca Gibb
Jack Johnson, Jo Platt MP, and Alex Johnson
Kevin Bonavia MP and Katie Combes
Lisa Smart MP, Eli Crossley, and Jack Johnson
Edward Morello MP and Emily Reuben
Irene Campbell MP and Michael Harvey
Dr Vasantha Gowda, Alex Johnson, Emily Reuben, and Alistair Carmichael MP

Published on 24 January 2025

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