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Northern Ireland

Bangor cancer campaigner Melanie's tears of joy at treatment U-turn

Delighted: Melanie Kennedy with her sons AJ and Josh
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A Bangor woman who campaigned for access to life-saving cancer drugs cried tears of joy last night after learning of a Department of Health U-turn that will improve access to promising new treatments.

Melanie Kennedy (41) was reacting to the news that changes to the Individual Funding Request (IFR) process will be made - meaning increased access to innovative new medicines for cancer and other conditions.

The IFR system is how doctors apply for new and innovative drugs which are not normally available through the NHS that they believe will give a patient a better quality of life, or even precious extra time with loved ones.

Following pressure from charities and patients such as Melanie, a public consultation into the IFR system was carried out last year.

However, earlier this year the permanent secretary of the Department of Health, Richard Pengelly, said moves to update the system could not go ahead without a Health Minister in post.

But now Mr Pengelly has said the changes to the IFR process will be implemented "as a priority" at a cost of up to £2.5m per year.

An emotional Melanie said last night: "I have shed many tears of joy and relief after learning this news, having put my heart and soul into this campaign while undergoing my own treatment.

"I can't believe that we have actually won the fight. I really didn't think that we would get anywhere with this without a Stormont Assembly.

"Initially we thought there would only be a change to the way drugs are commissioned but now we will be in line with the rest of the UK.

"Every day I have been contacted by patients and their families who aren't getting access to these treatments so this is life-changing for them.

"To know that they and we as campaigners won't have to fight any more is just phenomenal and it means the world to me."

The announcement means that treatments that are made available through the Cancer Drug Fund in England, which have received conditional approval from the National Institute for Health and Care Excellence (NICE), will also be made accessible to patients here.

Mr Pengelly said the move will allow Northern Ireland patients "the same access to cancer drugs as their counterparts in other UK regions".

Just last month, self-styled 'cancer warrior' Melanie announced her own improvement in her condition with the disease doctors said would kill her. In 2014, she was diagnosed with breast cancer and told she had five years to live.

After her earlier treatment stopped working, she became aware of a potentially-effective drug, Kadcyla, which was available on the NHS in Scotland - but could only be accessed privately in Northern Ireland at a cost of £20,000.

Melanie's battle for access to the drug to be extended to women here brought her to prominence as a campaigner, and in July 2017 her efforts led to Kadcyla being made available here.

Melanie had hoped Kadcyla - which is generally only considered life-lengthening, as opposed to a cure - would allow her to spend more time with her two sons, Josh (17) and AJ (6).

On August 14 she announced that liver tests had shown her to be free of the disease.

She now runs the Northern Ireland Cancer Advocacy movement, which provides support for other sufferers and says the department's decision is even better news than she could have ever expected.

Despite no Health Minister being in place, the department says it is satisfied that the planned changes are in the public interest and in line with the policy objectives of previous health ministers.

Alliance health spokeswoman Paula Bradshaw said many patients will be relieved to have their lives extended through access to new treatments.

"I know that there will be many individual campaigners and local cancer charities who will be just as delighted as I am at this news. It would appear that the Department of Health has finally bowed to pressure on this issue and that is to be warmly welcomed," she added.

Sinn Fein health spokesperson Pat Sheehan added: "Today's news is an important development for cancer patients seeking new and innovative treatments. It is important that this is implemented in a timely manner."

SDLP health spokesman Mark H Durkan said that while the announcement is welcome, it is also "long overdue".

Belfast Telegraph

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Delighted: Melanie Kennedy with her sons AJ and Josh