A delegation from Cancer Focus Northern Ireland has met with the panel set up to carry out an evaluation of the Individual Funding Request (IFR) process.
The IFR process is intended to provide access to unapproved specialist drugs for patients where there is an agreed clinical need. These drugs are only available by exception to patients in Northern Ireland, mostly because they are deemed too costly by the NICE approving body.
An evaluation into the IFR process was established by the Health Minister, in response to concerns raised by cancer patients, charities and political representatives that the current process is much too restrictive, and prohibiting access to non-NICE approved drugs.
Cancer Focus NI, supported by 14 other local cancer charities, launched the Equal Access Campaign in June, to highlight that 40 cancer drugs are not available to cancer patients in Northern Ireland that are available to patients in England. The main objective of the campaign has been the ending of the unfair ‘exceptionality’ clause at the heart of the IFR process, which denies access to 95% of patients in the initial stages of their request.
Speaking on Cancer Focus NI’s submission to the Evaluation Panel, Chief Executive, Roisin Foster said:
“Cancer Focus NI was pleased that significant progress was made in late 2011 in extending access to NICE approved drugs, but the reality is that a cancer patient in Northern Ireland today is 75-80% less likely to be able to access new drugs than patients with a similar stage/type of cancer in England. We believe this is the clearest evidence that demonstrates the overly restrictive nature of the IFR process.
“We believe the current IFR arrangements are not only denying access to drugs that would benefit cancer patients, but in so doing, causing great distress to patients and their families in their last few months or years of life. This is inhumane, and unacceptable, a view which is shared by over 26,000 patients and members of the public who pledged their support to the Equal Access Campaign in recent months”.
“The facts speak for themselves:
- 40 cancer drugs are available routinely to cancer patients in England through the Cancer Drugs Fund, and are available in Northern Ireland by exception only;
- Uptake of new cancer drugs is 75-80% lower in Northern Ireland than in England;
- The European Cancer Patients’ Bill of Rights calls for the optimum treatment for patients at the optimum time –an estimated 700 patients locally are being denied access to new therapies;
- In October, the Scottish Government was able to establish a dedicated £40m New Medicines Fund to give patients greater access to new medicines for rare conditions and end of life, paid for by the rebate from the UK-wide branded drug pricing scheme, the Pharmaceutical Pricing Regulation Scheme (PPRS) – why not in Northern Ireland?;
- In June 2014 the first quarterly rebate (for Jan – March 2014) of £2.89M was returned to the DHSSPS under the terms of the PPRS – this money must be used for its intended purpose, of funding new drugs (as in Scotland);
- Failure to keep up to date with new drugs is already significantly impacting on Northern Ireland being able to participate in new clinical trials, and this situation will become worse.
“Thanks to the very public Equal Access campaign, the public are no longer in the dark that cancer patients here are worse off in terms of being able to access new drugs, than other UK citizens. The Cancer Drugs Fund for English citizens has been operational since 2011; the Scottish Government has recently moved to establish a £40m dedicated fund for Scottish citizens – we call on our Executive to develop a robust mechanism so that Northern Ireland citizens have equivalent and equal access to cancer drugs, and on the pharmaceutical industry to review its pricing structure so the cost of these drugs is within the buying power of the NHS.”
Notes to Editor
- On 6th May 2014, Health Minister Edwin Poots announced that he had instructed the Department to carry out an evaluation of the Individual Funding Request (IFR) process
- On 24th September 2014, in a Written Statement to the Assembly, Health Minister Jim Wells announced widened scope for an evaluation of the Individual Funding Request process, and outlined the terms of reference http://www.dhsspsni.gov.uk/statement240914
- Initial findings of the evaluation are expected to be available from late November 2014, and the evaluation will be completed by the end of the year
- Cancer Focus Northern Ireland met with the evaluation panel on Wednesday 12th November, and handed over a written submission (attached)