The Individual Funding Request (IFR) process is a route to accessing medicines outside a commissioning policy. The Northern Ireland government has consulted on their proposals for changes to this process.
The proposals for IFRs in Northern Ireland acknowledge some of the different reasons that clinicians apply to access treatment through this route, which is a welcome change. Acknowledging these distinctions means that the Department has been able to create a more flexible process that takes into consideration the reality of patients in Northern Ireland.
In our response we outline some of the challenges that the rare disease community faces when trying to show that a treatment is effective, and in showing that one patient is different from others with the condition.
The patient population affected by a single rare condition is small. As a result there can be little information about natural history of the condition and/or limited evidence available. Conditions are often heterogeneous and manifestations in individual patients can vary in nature and severity of associated symptoms. It can be difficult to prove that one patient is different from a population about which little is known. This definition of clinical ‘exceptionality’ is usually impossible to apply to patients with rare conditions. This must be considered when applying the policy.
There are some welcome proposals in the IFR policy, including that IFRs for patients deemed to be a cohort will continue to be funded while a commissioning policy is developed. We have asked for clarity on how exactly this will be implemented. We argue that the Department of Health must ensure that, while a commissioning policy is developed, equitable decisions are being made, for example, granting access to the first three patients, and denying it to any subsequent requestors until a commissioning policy is agreed would not be fair to those requestors that happen to have come 4th, 5th etc. This measure would also ensure that patients are not penalised for delays in processing a commissioning policy.
Read the full proposals here, and click on the link at the top of this page to read our full response.