A 41-one-year-old father of three has begun treatment in London for a rare and aggressive cancer after being told that palliative care was the only option available to him in Ireland.
James Hastings from Kinvara, Co Galway, is undergoing life saving immunotherapy after a public campaign was launched to raise funds for him because the drug treatment has not been approved by the HSE.
The Irish Pharmaceutical Healthcare Association (IPHA) says it is working proactively with the HSE and the Department of Health to improve speed of access to new oncology drugs for patients in the public health service.
A new working group has been set up to examine initiatives which will be brought forward for ministerial approval in Budget 2024.
Mr Hastings and his wife Marian say they can now plan for a future with their three young sons, Eoin, Ben and Joey.
A few months earlier he was diagnosed with stage four cholangiocarcinoma - a rare bile duct cancer - and was told that this might be his last summer.
"It was the 19 June when we had the meeting with the oncologist in University College Hospital Galway and got the news that I have stage four cholangiocarcinoma," Mr Hastings said.
"So it was devastating and the prognosis was very bleak. The outlook for treatment in Ireland at that point is palliative care and chemotherapy, and that was unfortunately the only treatment available in the HSE for a public patient like me with this type of rare cancer."
Mr Hastings was told that he should put his affairs in order.
'Living hell'
"The following week I went to check my will and make sure that the life insurance policy was paid up," Mr Hastings said.
"I cycled the kids to school because it was the last week before they broke up for the holidays.
"I cycled them to school thinking it was the last time that I would ever do that because this type of cancer it is a very aggressive form of cancer and usually kills people within two years."
Mrs Hastings said her world fell apart and it was like being in a movie.
"It was just so surreal. It felt like we were floating above ourselves getting that news and trying to take it in," she said.
"I kept thinking there must be another way, there has to be, but it just seemed at that time that there wasn't any other options and it just felt like the walls were closing in on us. It was really terrifying.
"James is such a positive person though. He kept going despite the hell he was living through and was determined to find a way back to recovery."
Durvalumab
Despite the devastating prognosis Mr Hastings began researching all options and learned that his cancer cells were responsive to immunotherapy but the drug he needed was only available to lung cancer patients on the public health system.
"Just five percent of people with my diagnosis are responsive to this treatment and I fell into this tiny category," he said.
"I was overwhelmed to get this news after going through weeks of heartbreak and sorrow as to what lay ahead. But I couldn't get access to the drug I needed."
The drug Durvalumab, along with chemotherapy, had been recently approved by the European Medicines Agency as the standard first line of treatment for adults with this type of cancer. But it is currently only available to lung cancer patients.
It has to be assessed and agreed for reimbursement before being made available to public patients like Mr Hastings with his specific type of cancer.
"If I was a private patient I'd be getting this drug as a starting point," he said.
"But the HSE won't cover the cost of it. The drug costs around €11,000 per treatment per month and as a family of five that was way beyond our means.
"So we set up a GoFundMe appeal and it took off beyond our wildest dreams.
"Within weeks we had raised over €200,000 which will see me through extended treatment comfortably.
"Otherwise it takes months, maybe years for a drug to be assessed and approved for reimbursement and I just don't have that time on my side."
Mr Hastings is now receiving treatment in London with two immunotherapy drugs.
The targeted therapy tackles the molecular structure of his cancer cells and is tailored to his specific type of cancer.
"These drugs will significantly extend my life and may even eradicate my cancer," he said.
"I'm now making it my life's mission to become an advocate for anyone with a rare cancer to ensure they get the care and treatment they deserve."
The IPHA says it takes about two years for a cancer drug already in use to be approved for additional cancers and made available to patients in the public health service.
It says an early access scheme is now being proposed for certain medicines which will benefit patients suffering from rare diseases. A ministerial working group will report back in the autumn.
Mr Hastings is a coach with the local Kinvara United Football Club. He gives generously of his time to the local community and they have repaid him tenfold.
"I want to give a massive thanks to the community who have fundraised and given me and my family all the tools we need to be able to beat this cancer," he said.
Mr Hastings will now travel to London every four weeks for his bespoke treatment which will continue over the next two years.
