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Challenge NICE ruling on new Crohn's treatment

The National Institute for Health and Care Excellence (NICE) has decided not to recommend darvadstrocel, a new stem cell therapy for the treatment of complex perianal fistulas in adults with Crohn's Disease.

NICE Committee members have ruled, based on the clinical and economic evidence presented, that the treatment shows ‘only modest improvement’ and that it is ‘unclear how long the benefit’ of the treatment will last.

NICE, the organisation responsible for assessing the clinical and cost effectiveness of new drug treatments, has therefore concluded that the drug should not be made routinely available on the NHS in England and Wales.

Organisations and the public now have one last opportunity to have their say before NICE publishes its final decision. This is a last opportunity, for adults living with or caring for someone with a complex perianal fistula with Crohn’s Disease to:

  • Comment on whether the Committee have accurately captured the experience of those living with or caring for someone with this condition and the treatments available to them when forming their decision to not recommend the treatment.
  • Share their experience of living or caring for someone with this condition and current treatments or lack of them.
  • Raise any aspects of the decision that need particular consideration to ensure they avoid unlawful discrimination against any group of people on the grounds of race, gender, disability, religion or belief, sexual orientation, age, gender reassignment, pregnancy and maternity.

Crohn’s & Colitis UK are planning to submit further evidence as part of this appraisal.

Crohn’s & Colitis UK responded to the first stages of the appraisal and submitted evidence drawing on the experiences of those affected. Our evidence highlighted the debilitating effect of this condition and lack of treatment options currently available. We also supported patients to give evidence to the Committee when they met publicly to consider evidence last month.

If you would like to help inform our final submission, please email us at healthdev@crohnsandcolitis.org.uk by Monday 27 August 2018.

If you would like to submit evidence directly to NICE please visit the NICE website by Wednesday 5 September 2018.

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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can help by:

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