A cancer patient claims she has been robbed of 16 months of her life because the NHS is denying her a new drug.
Jen Hardy, 50, fears she will not see her youngest daughter graduate university and both her daughters married with children before she dies from the metastasized breast cancer which is killing her.
If Jen lived in England or Wales, a drug called Perjeta could have given her that chance.
Women with secondary breast cancer in England have been receiving the drug for four years, reports the Daily Record .
But last summer, the Scottish Medicines Consortium rejected it for the third time because it’s not considered cost-effective.
Today, Jen has helped launch Breast Cancer Now’s campaign Perjeta Now, calling for drug company Roche, the Scottish Government and the SMC to negotiate quickly to make it immediately available.
When Jen discovered she had metastasized breast cancer, she thought about moving to England to get Perjeta. But while uprooting could give her longer, she wouldn’t have her family nearby.
The case is similar to Welsh cancer campaigner Irfon Williams who was denied a cancer drug living in Wales so he moved over the border to get in in England.
Jen knows the importance of making good memories with the ones she loves but said: “We shouldn’t have to make a choice between life and family.”
Jen, a timetabler at Heriot-Watt University, was in Dubai when she learned of her illness.
She had gone to the doctor with an irritating cough and a hoarse voice which she thought were caused by laryngitis.
Her doctor thought so too and she was prescribed antibiotics. But when they didn’t clear the problem, her GP sent her to see a specialist just to be safe.
Jen said: “Heriot-Watt have a campus in Dubai. I was out there with a colleague and had just finished dinner when I got a call from the doctor to say, ‘I am really sorry but you have got advanced breast cancer’.”
Jen never knew she had breast cancer and by the time the disease was discovered, it had already metastasized and was incurable.
She said: “I didn’t know what advanced breast cancer was. I kept saying, ‘Treatable but not curable’. I am always going to have cancer, that was the biggest shock.
“Then I wanted to know how long I have got. It was like a death sentence.”
Worse was to follow when she learned a drug that could give her an extra 16 months was not available in Scotland.
Jen said: “My oncologist said I would start on chemotherapy and then go on to Herceptin. Then he asked if I had medical insurance or a spare £50,000 a year. I said, ‘No,’ but I met two younger women at the Maggie’s centre who had paid for four sessions each.
“They had taken out loans and borrowed money to get it.
“I went back to my oncologist and asked if that would be an option for me. It was something we could manage. But he said I would need to have a full round of treatment – about 18 months.
“I asked him to put in an individual patient treatment request form.”
Soon after the application went in, it was rejected.
Jen said: “I wasn’t considered an exceptional case.”
She added: “I thought we could sell our house and move to England because I could get Perjeta there.
“But I would rather have quality time with my family than a longer time away from them.
“Your mind is blown away when you are first diagnosed. To have to try to think about moving to another country is too much for your brain to cope with at that time.
“It just seemed such an unfair choice to have to make. Someone an hour and a half down the road can get it but I can’t. We shouldn’t have to think about cost because people in England and Wales don’t need to.
“Cancer affects a whole family. It is terrible not only for me but my family as well.”
And poignantly she said: “My chance to have it has passed now. You have to have it with your first treatment and my five months of chemotherapy is finished. I can only hope further research may discover something else.”
While Jen can’t benefit, she is determined to make sure other Scots women can.
She said: “Some young girls have just had wee babies, some haven’t even had babies yet. If I can help extend their lives, then it is all for the good. At least I have seen my girls grow up.
“But I want to see Carys finish university. I’d love to see her and my other daughter, Erin, married and have more time with my doggies and my husband. But the NHS has denied me the right to an extra 16 months of life.
“I am just glad that we now have Kadcyla in Scotland as an end of life drug. It just shows what can be done by taking a stand. It was a very successful campaign.
“When I come to the end of my life, I will think, and my family will think, how much longer I could have had if I had been given Perjeta? Maybe then I will wish I had moved down south.
“But if I don’t take a stand, who will?
“By dying early, I will probably miss being a granny. And I don’t want to leave my dogs Milly and Finn, they will think, ‘Where’s my mummy gone?’
“A lot of people think you are dying anyway, so what is the point of a few extra months but it is so important to create nice memories.
“The Government and the drug company say they are talking but there is a stalemate.”
Jen pointed out that not only will Perjeta extend life but it is a kinder treatment which targets cancer cells and leaves healthy cells unharmed, which helps give women a better quality of life.
She said: “We need this drug now to stop women dying earlier than they should.”
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