A mother-of-three has died just weeks after being told her cancer wasn’t ‘exceptional enough’ for a life-prolonging drug.
Sarah Summers, 31, was diagnosed with breast cancer in May last year after finding a lump.
She underwent 18 weeks of chemotherapy and had began to recover – but was told at the start of this year that she had a genetic mutation leaving her at high risk of further tumours.
In April, doctors confirmed the worst and revealed her cancer had returned and had even spread to her lungs.
Experts advised her to seek funding for a drug called Kadcyla but her local health board rejected her appeal.
Her health continued to deteriorate and she developed fluid on her lungs and pneumonia before losing her battle at the start of September.
Sarah Summers, 31, from Treherbert in the Rhondda, died just weeks after being denied funding for a life-saving breast cancer drug due to not being ‘exceptional enough’
Her husband Michael Poole, 31, from Treherbert in the Rhondda, said: ‘We were lost for words. Sarah’s oncologist herself could not understand how she was not judged to be clinically exceptional.
‘She told us that she had never had a patient like Sarah and believes she never will again.’
He added that her oncologist believed her case was exceptional – particularly given her mutated gene meant she was at high risk of developing cancer again.
‘It was a fight that proved too difficult but her family are left not knowing if her life could have been prolonged had she been granted the funding for Kadcyla,’ he said.
‘It played on my mind for weeks after her death and still does. I cannot understand why she wasn’t clinically exceptional.
‘I do not know if Kadcyla would have helped Sarah but I believe that for a few thousand pounds then a gamble should have been taken.’
Miss Summers noticed a lump in her left breast in May 2015 – leading her to seek medical advice.
She immediately went for tests at hospital where she was diagnosed with breast cancer.
Her husband Michael Poole, 31, said: ‘We were lost for words. Sarah’s oncologist herself could not understand how she was not judged to be clinically exceptional’
After 18 weeks of chemotherapy, a mastectomy and three weeks of radiotherapy, she began to recover.
But by the start of 2016, she was informed that she had a mutation in her p53 gene and was told she had Li-Fraumeni Syndrome.
The rare inherited cancer disorder that greatly increases someone’s risk of developing cancer during their life time.
Mr Poole said: ‘As Sarah was young when she developed breast cancer and both her mother and grandmother died of cancer there was a reason to suspect a genetic link.
‘Although it was a bad result especially given all she had endured the previous year, it did give answers as to why cancer was a problem within her family.’
In April, her doctors found another lump in her neck and she was told her cancer had returned and spread to her lungs.
After a few weeks her breathing became strained and she was sent to hospital with a suspected blood clot.
But a CT scan showed that the cancer was instead progressing.
She was initially diagnosed with breast cancer in May last year after finding a lump. She underwent 18 weeks of chemotherapy and had began to recover – but was told at the start of this year that she had a genetic mutation leaving her at high risk of further tumours
Following consultations with oncologists and specialists nurses, she was advised that the best treatment for her would be a drug called Kadcyla.
However, due to the cost of the drug and because it was not approved by NICE, she was told they would have to apply for funding from their local health board.
In August, they were finally told that the funding from Cwm Taf Health Board had not been approved as her condition was ‘not exceptional enough’.
Her health continued to deteriorate and as well as battling cancer, she developed fluid on the lung and pneumonia. She died at the start of September.
Cabinet Secretary for Health, Wellbeing and Sport, Vaughan Gething, announced in July that a new Treatments Fund was to be established in Wales.
He said £80m would be set aside to provide funding for new and innovative drugs that have been determined to be cost-effective by experts.
‘With a new treatment fund coming into place, it makes me think that if Sarah had cancer a little later in life then treatment may have been given,’ Mr Poole said.
In April, doctors confirmed the worst and revealed her cancer had returned and had even spread to her lungs (pictured with her son Jackson, four, and daughter Naomi, seven)
‘This is a heart-wrenching situation but even more so is the price that was put on her life.’
THE BATTLE FOR KADCYLA
Kadcyla – believed to be a life-extending breast cancer drug – was rejected by NHS rationing officials last year.
It has been found to extend the lives of women dying from aggressive breast cancer by months or even years.
But its manufacturer Roche was criticised for the high cost of the drug, which is priced at an average of £70,800 a year.
The Swiss firm offered an undisclosed discount on the price, but NHS drugs rationing watchdog NICE said the drug was still too expensive and refused to recommend that English and Welsh hospitals supply the treatment.
It was the eighth consecutive treatment for advanced breast cancer that NICE has rejected, with none approved since 2007.
Mr Poole has been working closely alongside Rhondda AM Leanne Wood, who has raised the issue of individual patient funding with the Cabinet Secretary.
Ms Wood said: ‘This tragic case highlights the need for reform in the way people can access treatments and drugs in Wales.
‘As I’ve said in correspondence to Cwm Taf University Health Board, on behalf of the family, the barriers to success through an individual patient funding request are unfair.
‘It also adds to families’ sorrows and can make it harder to accept that a loved one has a terminal illness when you believe more can be done.
‘The bureaucratic process is frustrating and seems to make no sense.’
Lynda Williams, director of Nursing, Midwifery and Patient Services at Cwm Taf University Health Board said: ‘We are unable to comment on individual patient cases or the outcome of individual patient funding requests.
‘Like all health boards and trusts in Wales, Cwm Taf University Health Board follows the All Wales policy for making decisions on Individual Patient Funding Requests (IPFR).
‘The health board has an IPFR panel to consider each request on its merits, using clinical evidence available, and the criteria set out within the All Wales policy.
‘This panel is chaired by a senior clinician and others, which may include consultants, GPs, pharmacists and lay representatives.’
Read more: http://www.dailymail.co.uk/health/article-3927944/Heartache-mother-three-31-dies-just-weeks-refused-funding-cancer-drug-disease-wasn-t-exceptional-enough.html#ixzz4PxrWggoK
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