04
July
2014

Meeting Minister on Equal Access

Cancer patients and charities, headed by Cancer Focus NI, held an ‘encouraging’ meeting with Health Minister Edwin Poots on July 3 2014 to discuss equal access to cancer drugs for Northern Ireland.

Mr Poots  said he was firmly committed to finding a speedy, politically acceptable resolution to this issue and he proposed a meeting with the First Minister and Deputy First Minister to move the campaign forward.

Our Equal Access campaign, calling for local patients to have the same access to life-extending cancer medicines as patients living in England, generated over 10,000 messages of support in the first 10 days of a three month campaign.

More funds required

At the meeting with the Minister, Roisin Foster, Chief Executive of Cancer Focus NI, called for the abolition of the restrictive Individual Funding Request (IFR) process, and ring-fenced funding for newer and end of life cancer medicines that are less likely to be NICE approved and available through the NHS.

Mrs Foster said: “I want to thank the public for the phenomenal support that they’ve shown for our Equal Access campaign so far. To date 12,000 emails have been sent to our MLAs, making this issue something that the Department of Health needs to address promptly.

“In May, the Minister announced a review of the IFR process – a system that manages how patients can access these 38 innovative cancer drugs.  While this is a move in the right direction, patients cannot afford an open ended review.  They want decisive action to give them access to the drugs that could extend their lives, improve their quality of life and ease symptoms.

Exceptionality clause

“That is why in our meeting with the Minister, we asked that the exceptionality clause – a criterion within the IFRs which denies 95% of applicants access to these specialist drugs – should be suspended immediately, with a view to it being abolished altogether in the long term.

” The removal of this clause would allow patients to access the cancer drugs they need under their clinicians’ recommendations without any further delay,” she said.

“We cannot allow access to essential drugs to become bogged down in politics. Patients simply cannot afford this delay.  There are too many patients in NI that have had to go without the drugs they desperately need or have had no choice but to self-fund, taking out second mortgages or spending their pension pot to get access to these drugs.

Patients’ needs

“The purpose of the Equal Access campaign is to ensure that the most effective drugs will be made available to local cancer patients in their time of need.  In the last two years, just 214 IFRs for innovative cancer medicines were granted in NI, compared to nearly 30,000 patients in England who received treatment through the Cancer Drugs Fund1. That is why we are asking for all political parties to demonstrate leadership on this issue, by committing to work together to find a resolution.

“There have been various options discussed as a means to meet this funding request. One includes funding available from the Pharmaceutical Price Regulation Scheme (PPRS), its purpose being to fund new and innovative medicines. We have been advised that this will be considered as a potential funding option.

Rights issue

“When it comes down to it, this is a rights issue. Article 2 of the European Cancer Patient’s Bill of Rights calls for optimal and timely access to appropriate treatment and care for every patient in the EU.  Why does this apply in England but not in Northern Ireland?”

Mrs Foster added: “Our meeting was encouraging. We received a firm commitment from the Minister to work to find a speedy, politically acceptable resolution to this issue. He also proposed that we meet with the First Minister and Deputy First Minister to bring the campaign further forward.  Progress is being made, but now more than ever we need the public to continue to rally behind us by visiting www.equalaccessni.org.”

Local cancer patient Allister Murphy has experienced first-hand the inequality of access to cancer drugs. He said: “I believe the situation in Northern Ireland is discriminatory. Granting greater access to these cancer drugs would help hundreds of advanced cancer patients like me right across Northern Ireland every year.  These drugs can extend our lives by years that we are told we’d never have. You can’t put a price on that extra time.”

Those who attending the meeting with the Minister on behalf of the Cancer Focus NI Equal Access campaign included Roisin Foster, chief executive of Cancer Focus NI, cancer patients Allister Murphy and Gary Vint, and Action Cancer chief executive, Gareth Kirk.

ENDS

NOTES

Currently there are 38 cancer drugs available to patients in England that are not readily available to patients in Northern Ireland. The drugs are listed on the NHS Cancer Drugs Fund webpage.

1 ABPI: Access to innovative cancer medicines not yet assessed by NICE falling outside NICE parameters.

ENGLAND

2012 – 2013                            15,546 patients accessed English CDF

2013 – 2014 (end of Dec)       14,137 patients accessed English CDF

TOTAL                                    29,683

N. IRELAND

Jan 2012 – March 2012          26 NI IFRs approved

April 2012 – March 2013         93 NI IFRs approved

April 2013 – Jan 2014             95 NI IFRs approved

TOTAL                                    214

The Cancer Focus NI Equal Access campaign was launched in mid-June in partnership with the Daily Mirror and with the support of 14 local charities (listed below).

The Equal Access campaign has received overwhelming support from the Northern Ireland public.  To date (July 4) the campaign has received 11,700 pledges of support, smashing the campaign’s initial target of 10,000 in only 10 days.

Local Northern Ireland charities supporting the online Equal Access campaign include:

  • Action Cancer
  • Care for Cancer
  • Cancer Connect
  • Cancer Choices
  • Angels of Hope
  • LILAC
  • Family Care in Cancer
  • Cancer Lifeline
  • Pretty ‘n’ Pink
  • NI Cancer Fund for Children
  • Friends of cancer centre
  • NI Hospice
  • Foyle Hospice
  • Southern Area Hospice
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