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Daughter upset after health agencies oppose cancer drugs fund championed by her late mother

By Victoria O'Hara

The daughter of a cancer drug campaigner who died last year said her mother would have been "horrified" after two leading health agencies said it is not necessary to establish a specialist medicines fund in Northern Ireland.

Inspirational Una Crudden was one of the many campaigners who had lobbied for a fund to be established in Northern Ireland to improve greater access to life-extending drugs and ending a 'postcode lottery' across the UK.

The 60-year-old grandmother from west Belfast died at the Northern Ireland Hospice last December, five years to the day she first received her diagnosis of ovarian cancer.

Her daughter Lisa McGarry had said in February her mother would have been elated after a Department of Health consultation was launched over a fund for specialist drugs for patients in Northern Ireland. The current process for accessing specialist unapproved cancer drugs, called the Individual Funding Request, was criticised as unfair. Currently 95% of patients in the initial stages of their request are denied, with some doctors calling it "too complex".

Drugs which are accessible in England are only made available if doctors can prove the patient is an "exceptional" case. This led to 24,000 people signing a petition for change and a consultation to review the situation.

But Lisa's joy turned to despair yesterday as it was revealed that both the Public Health Agency and Health and Social Care Board opposed creating such a fund.

They said the "Board and Agency disagree that it is necessary to establish a specialist medicines fund and emphasise that the establishment of such a fund could create inequity in regard to access to medicines and may reduce funding available elsewhere in HSC (Health and Social Care)."

They also disagreed with the need to amend the current definition of an "exceptional" case.

Ms McGarry said she was "stunned" by the their stance.

"I am horrified by this and I know my mother would be too. I can only imagine that this is a totally financially-based response," she said. "The fact that this consultation was sparked in response to a public campaign shows that there is a drive within society for change and for equal access for drugs that could extend lives. I can only hope that this will not be a reflection of the final decision."

Roisin Foster, chief executive of Cancer Focus Northern Ireland, said the agencies were out of touch with public opinion.

A Department of Health spokesman said: "The response to the public consultation is being assessed by the department and the minister is aiming to announce his finalised proposals in the months ahead."

A spokeswoman for the HSC Board said: "The Health and Social Care Board is unable to comment at this time as it currently awaits the outcome of the Department of Health, Social Services and Public Safety's consultation on Specialist Drugs Fund."

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