PHA/HSC ‘out of touch’ on cancer drugs

Cancer Focus Northern Ireland has branded the Public Health Agency and Health and Social Care Board as ‘out of touch’ with public opinion over their position on access to cancer drugs.

In a joint response to the DHSSPS Consultation on the Evaluation of the Individual Funding Request (IFR) Process, the PHA and HSCB (summary and full response here) :

• Disagreed with the need to amend the current definition of ‘exceptionality’
• Neither agreed nor disagreed with recommendation three, which refers to the need for greater transparency in IFR guidance
• Disagreed that it is necessary to establish a specialist medicines fund, saying that it could create inequity of access to medicines

Cancer Focus NI said the joint response was ‘out of touch’ with the strength of public opinion on the need to give considerably enhanced access to cancer medicines.

Reform needed

Chief Executive Roisin Foster said: “Frankly, we are astounded at such a negative response from PHA/Health and Social Care Board on the need to reform the IFR Process, which is at the heart of the problem of why local patients are denied access to drugs that are freely available elsewhere.

“Cancer Focus NI and 15 other charities launched the Equal Access campaign in June 2014 in response to concerns raised by cancer patients via our helpline about very limited access to non-NICE approved drugs. That campaign called for improved access to new drugs, and in particular for an end to the unfair and inhumane ‘exceptionality’ clause at the heart of the IFR process.

Public opinion

“The Equal Access campaign resonated strongly with public opinion in Northern Ireland, evidenced by the 20,000 emails and 6,000 postcards that demanded the same access to cancer medicines for patients in Northern Ireland as their counterparts living in other parts of the UK.

“It is with deep concern that we note the joint HSC Board/PHA Consultation response, where both organisations have disagreed with the need to amend the current definition of exceptionality. Moreover, both organisations do not appear to grasp the importance of making the system more transparent.

“Of most concern is the joint response to recommendation four, whereby the Board and the PHA disagree that it is necessary to establish a specialist medicines fund as this could ‘create inequity in regard to access to medicines’,” she said.

Impact on trials

“The Health and Social Care Board and PHA must also be mindful of the far-reaching, although perhaps unintended, consequences of the current IFR policy.  The negative impact of not increasing access to new drugs on the cancer research and clinical trials landscape in Northern Ireland does not seem to be considered in their response.

“We would urge them to reconsider the position they have taken on what is such an emotive and important issue to many families here.”

Mrs Foster concluded: “We need to remember that it’s the patients who are most severely and directly affected by this inequality.  Cancer Focus NI strongly believes the Department of Health ought to apply a humane and patient-centred approach to its restructuring of the drugs approval process.   It would be of great interest to know how many individual patients and patient groups the HSC Board and PHA consulted with during their IFR consultation response process.”

The Cancer Focus NI response to the consultation is available here Cancer Focus NI submission to IFR Evaluation May 2015.