Cancer52 has responded to the above consultation (January 2017). The full response can be found here.
In summary Cancer52 disagreed with the majority of the proposals put forward by the consultation. In particular we object to the discretionary element attached to the operation of the proposed budget impact threshold, the lack of any rationale for the threshold value selected (and proposed new QALY values) and the reinterpretation of the legislation supporting the funding requirement.
Said Dave Ryner, member of the policy group for Cancer52 and lead on this consultation, "We do not believe the objectives set out in the consultation, that patient access to drugs will be accelerated by reforms that will simplify and clarify processes, will be realised.
We believe the reality will be that some groups of patients will endure delayed access to drugs that NICE has recommended are clinically and cost effective for them where any decision making will be entirely at the discretion of NHSE."
Our key concerns are that the decision making process will lack a developed evidence base to support it and the absence of a challenge or appeal function; both of which will undermine the current process.
Overall we feel that the proposals maintain, rather than diminish, the disadvantages patients with rare and less common cancers face within the current evaluation environment.
We had hoped for a set of proposals that would move towards securing a pricing environment based on performance and outcomes. We are disappointed no mention is made of this laudable objective just as there is no mention of the existing price regulation scheme which caps the budget for drugs in the NHS.
We believe that the upgrading of existing control mechanisms like the scheme together with a commitment by NHSE to ensure disinvestment occurs for treatments NICE has found to be either ineffective or able to be replaced by new, more effective treatments is sufficient to deliver a sustainable environment for the introduction of new technologies into routine use in the NHS in England.