[NAME] MP
House of Commons
London
SW1A 0AA

Dear [NAME]

Re: Muscular Dystrophy UK’s Fast Track campaign for faster access to potential treatments for muscle-wasting conditions

I am writing to you regarding Muscular Dystrophy UK’s new Fast Track campaign calling for faster access to potential treatments for muscle-wasting conditions.

Muscle diseases weaken and waste muscles. They can cause lifelong disability or premature death, usually in childhood of young adulthood. The conditions can be inherited or acquired and can affect people of all ages, backgrounds and nationalities.

[You could include some more personal details here, for example your need to access potential treatments without delay, your concerns about possible obstacles in receiving treatment, and the impact of any delays on you and your family]

This is an encouraging time with many clinical trials in development, and several treatments either available or emerging on the horizon. Translarna, a drug to treat Duchenne muscular dystrophy, is now approved across the UK. Exondys 51, another drug to treat Duchenne, and Spinraza, a treatment for spinal muscular atrophy, are currently going through the regulatory and assessment processes.

However, it took nearly two years for Translarna to receive the green light after a lengthy and frustrating assessment process. Every day counts for individuals affected by muscle-wasting conditions: once it is lost, muscle strength and muscle mass cannot be regained. It is essential that access to future drugs for these conditions are not subject to the same major delays.

Once treatments are available it is crucial that people are able to access them quickly. I would therefore greatly appreciate your support in writing to NICE and NHS England on the following key issues.

For NICE:

  • increasing their capacity for assessing treatments
  • ensuring flexible approaches to appraisals

For NHS England:

  • earlier pricing discussions with pharmaceutical companies
  • reaching flexible treatment access arrangements
  • meeting additional costs for early access schemes
  • urgently reviewing Individual Funding Request processes.

For more information and any queries about contacting NICE and NHS England, please contact Clare Lucas at Muscular Dystrophy UK at r call 020 7803 4838.

Thank you for your support and I look forward to hearing from you shortly.

Yours sincerely,

[YOUR NAME]