We hosted a parliamentary reception and Q&A discussion in Parliament yesterday to discuss how to remove the barriers to fast access to treatments which are set out in our Fast Track campaign
People affected by muscle-wasting conditions had the opportunity to speak to over 20 MPs from across the party spectrum to highlight the importance of being able to access emerging treatments as quickly as possible.
Mary Glindon MP, Chair of the All Party Parliamentary Group for Muscular Dystrophy, hosted a Q&A discussion with Sheela Upadhyaya from NICE and paediatric neurologist, Prof Francesco Muntoni.
Discussions at the event focused on a broad range of topics including:
- Flexibility on appraisal processes and opportunities to discuss the use of a Managed Access Agreement, enabling the treatment to reach patients more quickly whilst further data was gathered on its efficacy.
- Developing mechanisms for rapid appraisals for severe and life-limiting conditions, drawing on comparisons with other European countries on rapid access for rare disease drugs.
- Ensuring that UK drug licensing continues to linked to the European Medicines Agency and that decisions are taken on a parallel timeframe after Brexit.
- An abbreviated approval process so that when safety and effectiveness of a technique, such as exon skipping, have been satisfactorily proven, it will be important for the MHRA and other regulators to ensure that each drug would not have to go through the same lengthy approvals process from the start once the safety and efficacy.
- Changes to the drug approvals process place greater emphasis on cost and budget impact test. With more drugs now in clinical trials and many of them expected to come through, NHS England will be required to strike more deals with companies.
- Horizon scanning and exploring the growing number of trials and treatments and tackling the short and long-term challenges posed by this.
Contact your parliamentarian
- If you live in England, you can support the campaign by writing to your MP using our template letter.
- If you live in Scotland, you can support the campaign by writing to your MSP using our template letter.
- If you live in Wales, you can support the campaign by writing to your AM using our template letter.
- If you live in Northern Ireland, you can support the campaign by writing to your MLA using our template letter.
It would be helpful if you could share a copy of your email to your parliamentarian with us by emailing Jonathan Kingsley at j.kingsley@musculardystrophyuk.org so that we can also help to enlist their support.