Early Access to Medicine Scheme
Friends
We ARE making a difference, and we couldn't have done it without you. THANK YOU.
I want to share some good news with you this morning.
I, along with my dear friend and fellow Duchenne mother, Emily Crossley from The Duchenne Children's Trust, have been campaigning hard to get the government to change the way new drugs are approved, so that patients with desperate need can get access to them as soon as possible.
Emily and I meeting Geoffrey Clifton-Brown MP and Sir Peter Lachmann at the Empower meeting in the House of Commons in January.
I'm delighted to say that the Health Secretary Jeremy Hunt will today announce the launch of an Early Access to Medicines scheme, that will allow patients access to promising drugs in development, anything from TWO to TEN years sooner than they would otherwise have got them.
THIS COULD SAVE LIVES. We've been told that a company developing a drug to help boys with Duchenne has been chosen as the flagship drug for this scheme, as a DIRECT RESULT of the testimony that Emily and I gave at the Empower meeting above.
The Oxford based company SUMMIT is planning a trial for later this year of a drug that could help ALL children with Duchenne.
All your money is going on research - the charity has spent no money on lobbying - just our time, commitment and energy to making the future better.
Friends - this is great news for children with DMD. There ARE promising drugs that are out there - and we are funding them.
But the normal drug development programme takes too long to help this generation. This new scheme makes helping them a reality.
Much love
Alex and Andy x
Parents Diaries
- Parent Diaries List...
- Early Access to Medicine Scheme
- Why Medical Innovation is Key
- Duchenne Policy Forum in Washington DC
- L'Etape Part 1
- Nearly a year on
- Dubai friday brunch
- We have lift off
- The start of the journey
- Frustration is building
- Guest Blog by Ruth Le Gal
- A Call to Action
- My email to Federal Drug Administration
- Solid Science Summit
- Five years on
- ‘Do you have proof your son is disabled?’
- Update from Jet 2
- Protecting myself - COVID-19
- Being the parent of a child on a Clinical Trial
- A huge step forward
How You Can Help
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Take a look at this section to find out further ways that you can help us beat DMD.
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