'This drug is my only hope' - Dublin woman fighting 11 tumours
Published 02/08/2016 | 10:10
A DUBLIN woman whose only chance of surviving cancer is an expensive drug used in the UK and America, is pleading with Health Minister Simon Harris to sanction it for her.
Jacinta Kelleher (34) has exhausted every other drug for her stage-four kidney cancer and has now begun an online petition for Nivolumab, known as Opdivo, to be given to her to help combat the 11 tumours in her body.
“This drug has worked in people who have the same cancer as me. It is my only hope and my doctors think it can work. I just can’t get it because it costs too much money at the moment, and time is not on my side,” she said.
It costs up to €100,000 per patient a year and although it is available in the UK and America, it was rejected here on cost-efficiency grounds by the National Centre for Pharmacoeconomics.
Earlier this year, Opdivo manufacturers Bristol-Myers Squibb extended its use by 200 patients, who had been receiving it as part of a compassionate-access programme.
“I have undergone numerous surgeries and in 2013 I was given just five years to live,” the Walkinstown woman said.
“At the time, David (34) and I were planning our wedding. On the advice of doctors we brought it forward by four months and instead of Spain, we got married in Dublin. It was a magical day, but unlike other married couples we did it not knowing what the future would bring us.”
Jacinta was diagnosed in January 2013 after waking up on New Year’s Day with “a throbbing pain radiating from my left-hand side”.
“It turned out to be a 15cm tumour that had engulfed my kidney. It had been there a long time,” she said.
Jacinta had to have her kidney removed and just before the wedding, scans showed she was cancer free.
However, tests in August 2013 showed the cancer was reoccurring. Over the next year she had a number of operations to tackle the cancer.
“Around Christmas 2014, I began to notice a bit of pain behind my eye, and also I was losing my balance a lot. A CT scan in February 2015 confirmed there was a tumour on top of my eye.”
Jacinta underwent an operation to remove that tumour but more have since developed.
“I am currently living with two tumours in my lungs, one in my right kidney, six in my abdomen, one where my kidney was removed and one in my pelvis.”
“Nivolumab or Opdivo is my final and only option left – it is proven to save and lengthen the lives of those with kidney, lung and melanoma cancers. I have started a change.org online petition to have it made widely available via the HSE.
“My doctors have made a special application on my behalf on compassionate grounds for the drug. There is a glimmer of hope at least,” Jacinta said.
“The drug costs from €50,000-€100,000 per year of treatment. At the moment, health authorities in this country feel that cost is too much. A price is put on human life – and to be told you’re not worth it is heartbreaking for cancer patients and their families.
“Nivolumab is still under assessment by the HSE at this time. The compassionate access scheme is operated by Bristol Myers Squibb themselves and it would be for them to speak to about it,” she added.
“There are so many people like me in the country and it just makes no sense that it hasn’t been approved. It’s such a powerful drug, there are lives at risk. It’s proven to work, it’s proven to extend lives,” explained Jacinta.
“I emailed Simon Harris months ago and got a generic response. He needs to imagine it’s someone in his family, that anybody would fight to spend every minute with their family if they could.”
“That’s all that someone with cancer wants. All they want is time."
Jacinta praises Arc, a cancer support charity that provides free services to people living with cancer and their friends and families.
“I wouldn’t have made it as far as I have without Arc,” she said.
“It’s a mental and emotional struggle. All services with Arc are free; counselling, mindfulness training, whatever you need. They help so many people and don’t get the credit they deserve.”
Jacinta is urging the public to sign her petition in an effort to get the Irish government to approve Opdivo.
She has received an “overwhelming” response so far: “There’s no way I can describe it. People are offering their homes to me.”
Sign the petition to urge Minister for Health Simon Harris and the Irish Government to make Opdivo available in Ireland here.