TIME is not on Louise Thomas's side.

A mother-of-five with incurable cancer, her dearest wish is to live long enough for her children – the youngest of whom are just three and five years old – to build more precious memories of her.

But she has been refused treatment with Avastin, the drug representing the best chance of prolonging her life, because her condition is not considered clinically exceptional enough.

The 45-year-old, from Trevethin, Pontypool, was diagnosed in July with cervical cancer. Shortly afterwards, secondary tumours were discovered in her liver and lungs.

Doctors treating her at Velindre Cancer Centre submitted an Individual Patient Funding Request (IPFR) to Aneurin Bevan University Health Board, for Avastin.

Not routinely available in Wales, the drug, removed from England’s controversial Cancer Drugs Fund last year having been available previously, has been shown to extend patients’ lives by several months. It was approved for routine use in the NHS in Scotland last May.

The health board's IPFR panel last month refused the request, stating that 'clinical exceptionality' had not been proved.

The refusal letter states: "The panel could not identify clinical information that demonstrated that the patient was significantly different to others with the condition, or demonstrated that the patient would derive significantly more benefit from the proposed treatment than others with the condition."

An appeal is being prepared, but Ms Thomas and partner Phil Clarke have been left angry and scared.

“Louise starts her third session of chemotherapy soon, then she’ll have a scan,” said Mr Clarke.

“If the doctors are happy with her progress, she’ll have three more bouts chemotherapy, with the last at the end of January.”

But Avastin must be given with chemotherapy, and the couple feel they are in a race against time.

"Sometimes I feel like I will win this fight, sometimes it feels like Avastin might as well as be a million miles away,” said Ms Thomas.

"I’m scared. I'm fighting a disease I have no control over.

"It makes me angry that Avastin is available elsewhere, but on the other hand I’d feel guilty if I get it and other people might not be in a position to.

"It's so cruel and very hard on the children. A five-year-old shouldn't have to know about things like chemotherapy.

"Everything is a fight and I don't know if I have the strength to keep fighting.

"I just want the right to live my life and a chance to watch my children grow up.

"I don't want Phil to have to point to a picture of me on the wall and say, "that's mummy" or "mummy's a star in the sky." I want the children to have me there for as long as possible."

Decisions based on circumstances

THE health board's IPFR panel meets regularly to consider requests to fund treatment outside the national guidance issued by treatments regulatory body NICE, the National institute for Health and Care Excellence.

“IPFR panels work within a national framework and makes decisions in relation to patients, based on exceptional aspects of an individual’s clinical condition," said a health board spokesman, who stressed that cases can be reviewed.

"An exceptional case is where the patient will derive a greater clinical benefit from the treatment than other patients with the same disease, and whether the clinical presentation of the case is deemed to be rare or exceptional."

A Welsh Government spokesman said it has "a proud record of making sure patients have access to evidence-based, clinically and cost-effective treatments for all conditions, not just cancer."

“NICE, which makes decisions about which treatments should be available within the NHS based on clinical and cost effectiveness, has not recommended Avastin for routine use on the NHS in England or Wales,” he said.

“Where a treatment is not routinely available in the Welsh NHS, and a patient’s clinical circumstances indicate they are likely to gain significantly more benefit from a treatment than would normally be expected, clinicians may apply through the Individual Patient Funding Request (IPFR) process, on the patient’s behalf.”