NO PRICE ON A LIFE I asked doctor if I would live to see my daughter go to high school. He couldn’t answer. Thanks to Kadcyla, I did.
RECORD CAMPAIGN DYING PATIENTS STUCK IN THE MIDDLE
SOME things are impossible to put a price on – things like seeing your daughter start secondary school or sitting on a warm, sandy beach watching your family splash about in the sea.
Lesley Graham, who has incurable breast cancer, has been able to enjoy such precious moments because of the revolutionary drug Kadcyla.
In April last year, she was told she had four to six months to live because the cancer had spread.
Ten months later, she is living a full life, thanks to Kadcyla. She feels well and has recently returned from a break in Spain with her family.
But not every woman in Lesley’s position has access to Kadcyla because it is not routinely available on the NHS in Scotland.
Lesley, 39, is fighting to change that because she knows how effective the drug can be.
She said: “I saw the oncologist on April 25 last year and he told me I had between four and six months to live.
“I asked if I would see my daughter Rebekah going to high school. He couldn’t answer that question.
“Now, after being on Kadcyla, my life is 99 per cent normal.
“Tumours on my bones and rib have calcified and, overall, the cancer has reduced by more than 30 per cent.
“I got to see Rebekah going to high school. Now I am just a normal mum – I am not an ill mum.
“I don’t take a day for granted – I embrace it.
“I never thought I would get another foreign holiday with my children. I thought they would be going themselves with my husband.
“Sitting on a sandy beach and watching the kids running in and out of the water was my equivalent of winning the lottery.
“I wish I could bottle that particular moment in time.”
Kadcyla has been shown to extend the life of women like Lesley, who have incurable HER2-positive breast cancer.
But at the moment, it is only given after individual patient treatment requests (IPTR) are made – and only a handful of women have been approved under the scheme.
On Tuesday, the Scottish Medicines Consortium will meet Roche, who make Kadcyla, and decide if the drug should be freely available on the NHS.
The cost and whether Kadcyla represents value for money will be crucial to the discussions.
Lesley, of Barrhead, near Glasgow, said: “The drug company are producing something that can help people but it is not being made easily available. I think that is a liberty.
“Two out of every five women will get breast cancer and there is potential for it to develop into secondary cancer. We should be helping women live with that illness, not die of the illness.
“Living with this cancer is like someone pulling the pin out a hand grenade and forcing you to swallow it. The grenade might go off, it might never go off, or it might go off in the next 10 minutes.
“You just try to make every second count and hope it is dud hand grenade.
“Kadcyla can give people hope. We need to do everything we can to have it approved.”
Lesley was diagnosed with breast cancer in March 2015. She had initially gone to her GP about a pimple on her breast that wouldn’t burst.
She had chemo, surgery and radiotherapy. By that October, everything looked great and Lesley was told to “go and get on with the rest of my life”.
She returned to work as a childminder after Christmas that year.
But in February last year, a blood test showed elevated liver enzymes. Following scans, Lesley was told that the cancer had spread to her liver, a rib, spine and part of her brain.
She and husband Colin rang their family and friends and asked them to come to their house, where they broke the news.
Then, Colin picked up Rebekah, 12, and Charlotte, 15, from school and told them.
Lesley said: “My house was full of about 30 people all crying together.”
The mum started doing research and came across Kadcyla, but her consultant said it was not available on the NHS.
They put in an IPTR but it was turned down because of the cost in relation to the amount of extra time it was likely to give Lesley.
She refused to take the decision lying down and contacted newspapers and radio stations to publicise her case.
Lesley said: “I just thought you got unwell and got what you needed. I was so naive.
“I didn’t know where to go. Who helps people in my position? Was I just to go home and curl up in a corner and die?”
The publicity helped and the IPTR committee caved in. Lesley started on a course of Kadcyla last May.
The drug has fewer side-effects than other treatment options, so she is able to stay busy and active.
Next month, she will throw a huge party to mark her 40th birthday – a day she wasn’t expected to see.
Lesley is one of a group of women who have teamed up with Breast Cancer Now to launch a petition – backed by the Record – calling for the SMC and Roche to reach a deal on Kadcyla next week.
Lesley said: “We must end this madness of there being a drug that helps but people who need it can’t get it.”
NEGOTIATIONS to allow access to new drugs on the NHS take time – the one thing terminally ill patients don’t have. There needs to be evidence that the treatment is potentially effective and that the price the drug companies charge represents value for money. Labour’s health spokesman Anas Sarwar said the SNP and the Scottish Medicines Consortium need to do more to speed up the process of allowing patients access to potentially life-saving drugs.
He added: “We have to start negotiating with pharmaceutical companies. The Government and the SMC try to pin the blame on them.
“People’s lives are at risk, trapped between buyer and supplier.”
A SMC spokesman said they were working with NHS boards, patient groups, drug firms and the Government to improve appropriate access to new medicines.
In December, a review of access to new medicines for patients was published by Dr Brian Montgomery.
He made several recommendations, including giving the SMC an option to recommend a drug for use subject to ongoing evaluation and reassessment.
Health Secretary Shona Robison said: “We’re taking forward the recommendations from Dr Montgomery’s review.”