Peter’s race against time to get cancer drug
SLIGO CANCER SUPPORT CENTRE FUNDRAISER PETER MILNE HAS BEEN TOLD THAT IT COULD BE A YEAR BEFORE DOCTORS CAN PRESCRIBE A DRUG TO SLOW HIS CANCER. SORCHA CROWLEY REPORTS
Sligo Cancer fundraiser Peter Milne is in a race against time to get the Government to stick to its promise of funding a kidney cancer drug he needs to survive.
Peter’s only hope is the drug Nivolumab, which is still not yet available to HSE patients.
In July however, Health Minister Simon Harris Nine announced that nine new life-changing drugs would be made available later this year after the Health Service Executive and the Department of Health resolved a dispute over funding the medication.
The drugs include Nivolumab along with other drugs used to treat cancer, heart disease and depression and will be funded this year from the HSE’s existing budget.
The Government said the drugs would be available from September.
It was a lifeline for Peter who needs the drug to control the spread of his cancer.
He has been battling kidney cancer since 2008 and suffered a relapse in 2014. He was told last April that the drugs he was on were no longer working.
The ray of hope from Minister Harris in July wasn’t to last long.
Just last Wednesday, following a procedure at a Dublin hospital, his consultant Professor Ray McDermott gave Peter and his wife Bernie the devastating news that his tumour had grown and he needed to be treated with Nivolumab immediately - but it could be a year before it’s made available by the HSE.
A year is time Peter hasn’t got.
“He needs it now,” said his distraught wife Bernie Marron, “but the Government won’t pay for it now.”
“We’ve gone from the euphoria in July when the Government announced they would approve it for reimbursement, to crushing disappointment. The doctor has no sense that it’s in the pipeline any time soon,” she said.
“The doctor told him his tumour had grown. That’s why he’s having difficulty breathing. The Government said it’s not available to Peter. They won’t pay for it,” she told The Sligo Champion.
Speaking last July, Minister Harris said he had asked that the issue be resolved as a matter of urgency, so that patients were not adversely affected.
Minister Harris added that “the speedy provision of these nine treatments is a priority, and I expect the HSE to conclude all the necessary processes - clinical, commercial and legal - as a matter of priority, to ensure that clinicians and patients have access to these treatment options as soon as possible.”
“This idea that it was going to be released by September turns out not to be true,” said Bernie.
She has raised the matter in political circles in a bid to keep the pressure on the Government to keep its promise made last July.
“I’ve emailed them all. I’ve spoken to Deputy Tony McLoughlin who is our Government TD and he said he was going to speak to Minster Simon Harris on our behalf.
“I rang him today and he said that he hadn’t gotten to speak to Simon Harris but he was trying to reach him.
“Martin Kenny tried to phone me back when I was driving. I emailed Marc MacSharry and left a message. I’ve also written to all the members of the Oireachtas Committee on Health, which includes some Senators.
“They were very helpful before. I know it was late Friday and this is only Monday so we’ ll see what happens.
“I’d really like there to be movement ahead of a consultation we have Tuesday (today) with Peter’s consultant.
“If the people who prescribe it have no time line, you don’t know where you are. We would try to put the money together if it was a matter of a few weeks but it’s expensive,” she said.
“I don’t think it costs much more than the drugs he was on though. But our consultant told us not to bankrupt ourselves,” she added.
The drug is estimated to cost in the region of ¤100,000-¤140,000 per annum. It’s not a cure, it’s a life-extending drug, says Bernie.
Nivolumab was recently approved for use by the HSE and deemed effective to treat kidney cancer such as that which Peter suffers from. Peter had been switched to a different generic brand of the same drug he was on that stopped working for him in April but his family did not have high expectations that would work.
Now it seems their worst fears have come to pass.
“I would love to have Peter home. But I don’t know if the doctors are waiting to find out about the treatment of Nivolumab for Peter,” she said.
Speaking from hospital in Dublin to The Sligo Champion yesterday, Bernie said Peter was doing OK and in good spirits.
“His lungs got infected from where the tumour is growing and blocking his airways. The situation is that a second drug he was put on has stopped working.
“Nivolumab is a immunotherapy. It’s licenced in the UK and used by the NHS,” she said.
The retired drama teacher had a cancerous kidney removed in 2008 but the cancer resurfaced in 2014 and he has been receiving ongoing treatment for terminal cancer ever since.
Not one to rest on his laurels, Peter began raising thousands of Euro for Sligo Cancer Support Centre.
In 2015 Peter climbed the four highest peaks in Ireland, England, Scotland and Wales to raise funds for the local charity: Carrauntwohill in Kerry, Snowden in Wales, Scafell Pike in the Lake District in England and Ben Nevis in Scotland.
Speaking in 2015, Peter said the Cancer Support Centre in Sligo had been “a brilliant resource” for his family.
“We were in a state of shock, when we got the news and I can’t thank them enough. On one side they have a huge amount of expertise, massages and counselling to make life easier for people, but there’s always a welcome for you there. It’s unbelievably warm, welcoming and peaceful over there as a place where you can go and just chat anytime,” he said at the time.
“I’ve had some wonderful counselling sessions with their counsellor. Not pushing it aside, dealing with it. At the same time, living life to the full,” he said.
His Four Peak Mountain climb so inspired a UK Insurance company that they raised almost €4,500 by climbing the equivalent height by going up and down their office stairs in 2016. They presented the cheque at the summit during Peter’s annual community climb of Benbulbe.
For his wife Bernie and two grown children, Sinead and Ronan, every moment gained with Peter is now precious.
The Sligo Champion had still not received a comment from the HSE at the time of going to press yesterday evening (Monday).
IT’S A CRUSHING DISAPPOINTMENT AFTER THE EUPHORIA OF THE GOVERNMENT ANNOUNCEMENT IN JULY THAT THEY WOULD FUND THE DRUG