Canakinumab / Ilaris Approved!


For the last 6 months, we have been involved in the consultation of Canakinumab being funded through NHS England for HIDS, TRAPS and FMF. It is already approved for CAPS. It came into level 3 which did not give it automatic approval for funding, however we are really pleased to say that there was funding remaining in the budget to approve Canakinumab (“For this round we are pleased to announce there was sufficient available resource to fund treatments falling in level one and two. There was not, however, sufficient remaining resource to fund all policies falling in level three. On the basis of CPAG advising that of the level three priorities human coagulation factor X and Canakinumab had the greatest clinical benefit, the Board took the decision to fund these two policies with the remaining resource.”). The drug will be available in April 2020, in the new financial year. This is a huge success for patients moving forward. We are delighted with the news and we would like to thank NHS England for allowing us to be a part of this process.

How we were involved:

Stage 1 – We were able to give feedback on the draft policy of the drug before it was submitted to NHS England.

Stage 2 – We wrote a patient impact report. “The patient impact reports had a more mixed reception with a number of stakeholders declining to take part due to an organisations’ policy, lack of resource, and/or questions about how the reports differ from information already reviewed at CPAG and through consultations. After speaking to stakeholders, we will therefore discontinue these particular reports and instead invest even more time in raising awareness about consultations with the patient community and ensuring the patient impact of a disease continues to be fully integrated into the process and reflected in documents reviewed by CPAG” We are sad to see this amazing opportunity being discontinued as it was an amazing opportunity for patients to have a voice during the process. However, that does not stop our involvement in future drug processes.

Stage 3 – We attended the consultation meeting as a public viewer. This allowed us to understand the next stage of the process and ask question using

Stage 4 – We are notified of the outcome.

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Rare Autoinflammatory Conditions Community - UK (RACC - UK) ®

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