Belfast Telegraph

'I may have to leave my family for England to get cancer drug that I need'

By Stephanie Bell and Victoria O'Hara

A woman with incurable cancer has told how she may have to leave her family and Northern Ireland to get the drug she needs to prolong her life.

Belfast artist Nicola Russell, who has been diagnosed with secondary cancer, has branded as "inhuman" how patients here are being denied access to specialist drugs available to patients in the rest of the UK.

The seriously ill 50-year-old spoke out as a campaign was launched by Cancer Focus NI for the Government to end the postcode lottery of innovative drugs.

Currently there are 38 drugs which patients in Northern Ireland cannot access, but which are available through the Cancer Drugs Fund in England.

Nicola is one of those patients. She was diagnosed with breast cancer in 2007 and prescribed the drug Tamoxifen for five years.

Nicola initially recovered, but was told last July that she had secondary cancer in her leg and her lungs. She had to pay almost £1,500 for consultations, only to be told the drug she needed wasn't available in Northern Ireland.

She said: "It is a crazy situation. I've been reading about other people in articles in the Belfast Telegraph and when I read their stories my heart broke for them, and I just think what is happening is inhuman. I just feel I can't sit back and not lend my own voice to the campaign."

The artist added that she was "horrified" at the situation: "It's shattering to be told that there is a treatment that will help you and prolong your life but you can't have it. I don't know how any political party who stands for social justice is not hanging their heads in shame at the situation here. It is unspeakably wrong," she said.

"In many ways it is typical of Northern Ireland in the sense that we can get fired up about things like flags, which I know are important to some people, and then ignore things that have huge significance, and just brush them under the carpet."

It has been suggested that a £3 prescription charge could support a £3m cancer drugs fund for Northern Ireland.

Health Minister Edwin Poots has said he would consider a £25 'capped' annual prescription charge. But until a decision is made, cancer patients are being denied the drugs which could prolong life and which they could access if they lived in England.

Campaigners also suggest that millions of pounds to establish the fund are in fact available through the Pharmaceutical Price Regulation Scheme (PPRS).

The Association of the British Pharmaceutical Industry (ABPI) has claimed a new agreement with the UK Government could boost access to new cancer medicines, adding that Mr Poots is not stating the "full potential" of the scheme, something the Department of Health has denied.

The ABPI has now called for Mr Poots to clarify the issue. The five-year PPRS agreement controls the prices of branded drugs sold to the health service. Around £2.8m was returned through a scheme in the last financial year.

The comments come after a statement from Mr Poots who said the primary purpose of the scheme was to constrain the cost of medicines across the UK and that the PPRS "was never intended to fund specialist drugs".

But Colette Goldrick, director of the Northern Ireland branch of ABPI, said the new deal could in fact boost funds.

The ABPI also said the individual funding request process of how patients can access drugs currently unavailable needs to be suspended pending a review, and that the criteria of proving a patient is "exceptional" causes a huge hurdle for clinicians.

Ms Goldrick said this led to applications not being made for the patient.

The department was asked to provide the estimated funds that will be created between 2014 to 2019 through the new PPRS.

But a DHSSPS spokeswoman said: "No new funds will be created – rather monies will no longer be required to meet an increase in the branded drugs bill.

"As the monies to meet any increased budget were not available in Northern Ireland in advance of the PPRS scheme, there will be no release of any monies as a result of the scheme."

Five drugs not routinely available to patients here

Regorafenib - advanced gastro-intestinal stromal tumours

Trastuzumab Emtansin - (Stage IV) breast cancer

Ofatumumab - chronic lymphocytic leukaemia

Panitumumab - colorectal cancer

Lapatinib - advanced breast cancer

Who's entitled to receive treatment?

Q. What is the Cancer Drugs Fund?

A. The Cancer Drugs Fund is money the Government has set aside to pay for cancer drugs that haven't been approved by the National Institute for Health and Care Excellence (NICE) and aren't available within the NHS.

This may be because the drugs haven't been looked at yet or because NICE have said that they don't work well enough or are not cost effective.

The aim of the fund is to make it easier for people to get as much treatment as possible.

Q. Can people in Northern Ireland use it?

A. No, the £200m Cancer Drugs Fund is for people who live in England.

The governments of Scotland, Wales and Northern Ireland decide on how they spend money on health and so far haven't decided to have a similar programme.

Q. Can patients access the drugs at all?

A. If NICE (National Institute for Health and Care Excellence) has recommended that a drug should not be used within the NHS, it is unlikely to be funded in Northern Ireland.

Unlike England, Northern Ireland does not have a Cancer Drugs Fund for drugs that have not been approved by NICE.

Q. Can a patient still apply to access a drug?

A. It may be that a cancer specialist thinks a patient would benefit from a particular drug or treatment that has not been recommended for use in Northern Ireland.

If there are very special clinical circumstances a cancer specialist can apply to the Health and Social Care Board asking for the drug to be made available as an exception to the normal rules.

This is called an Individual Funding Request (IFR). Only one-in-eight who does apply is successful in Northern Ireland.

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