A terminally ill mum is pleading for a cancer drug to remain free on the NHS so she can live long enough to see her son start school.
Bonnie Fox, 39, was diagnosed with secondary cancer in July 2015, just four months after her son Barnaby was born.
When the two drugs she is currently on to treat her breast, bone and liver cancer stop working, the only strong medication she would be able to use is Kadcyla – costing £90,000 per patient.
She says she knows other mums who have had a “relatively normal” quality of life while taking the “remarkable” drug for two to three years.
But the NHS watchdog has recommended that the drug should not be supplied to about 1,200 people because “it does not work well enough to justify its high cost” of £90,000 per patient.
MP for Croydon South Chris Philp, Bonnie’s local MP, is backing her campaign, which calls for the drug to continue to be available.
Mr Philp is also calling for a meeting with Minister of State for Health Philip Dunne to discuss Bonnie’s concerns.
Bonnie said: “This drug could add precious years to my life so not having the drug would add huge anxiety.
“It’s already an enormously anxious situation anyway, dealing with this disease and I don’t know when it is that I’m going to need it but I need to know it is there for me when I do.
“I feel cheated that I’ve known so many women that have done so well on this drug and I’ve seen what they can do, the good quality of life they can have.
“I’m thinking in terms of the years it could add and what I could see with Barnaby.
“I’m looking ahead and Kadcyla could be that difference that lets me live long enough to see him go to school.
“That’s my goal and what I’m aiming for.”
Croydon-born Bonnie had very few symptoms before she was diagnosed with the incurable cancer.
She had problems breastfeeding Barnaby, who is two in February, after he was born but was initially told it was blocked milk ducts.
After several scans, which revealed nothing, one of her lymph nodes was seen to be swollen and when a doctor did a biopsy, they discovered she had breast cancer.
Bonnie added: “It was just the most enormous shock and the last thing I ever expected.
“I thought it would just be an infection, so I didn’t go with anyone and I just took Barnaby with me.
“You just got used to having a baby, it wasn’t easy for us to have a baby either, so you think finally our lives are in order and everything’s going really well and that happens.
“I run over in my head all the time, could I have found this sooner?
“I feel like I’m partly to blame that I didn’t find this thing that was growing in my body all that time.
“If I wasn’t having the breastfeeding problems, it wouldn’t have been found when it was.”
In the “whirlwind” weeks that followed, she then found out that her HER2-positive cancer, which cannot be surgically removed, had spread to her liver and bones.
She began six months of chemotherapy and was put on two drugs, which she is still prescribed, called Herceptin and Perjeta.
These stabilising drugs, which can also reduce the tumours’ size, will eventually stop working, leaving Kadcyla as her only option.
A decision will be made on whether the drug, which is funded by the Cancer Drugs Fund, can still be funded in February.
The National Institution for Health and Care Excellence (NICE), which provides national guidance to the NHS, said data showed the drug can help women live up to nine months longer.
But Bonnie, who returned to work as a project manager part-time last February, says she knows women who have lived up to three years while on the drug, enjoying a good quality of life.
If the drug is not recommended for continued funding, she would either have to pay for it herself, access it through clinical trials or go on harsh chemotherapy – which may not even work.
She said: “Nobody knows how you are going to react to drugs.
“In some ways it’s really hard as you would like to know how long you’ve got left, as you want to plan and arrange things but, at the same time, I think it’s probably best that you don’t know.
“Kadcyla is a remarkable drug that has had incredible results and can add years of quality time.
“I have known women to climb mountains on this drug and travel the world but, most importantly, continue with their jobs, continue playing an active role as a mother and continue contributing to society.”
Professor Carole Longson MBE, director of the Centre for Health Technology Evaluation at NICE, said: “We know that people with cancer place great importance on drugs that can increase their life expectancy.
“For that reason we apply as much flexibility as we can when we look at new life-extending treatments.
“But the reality is that the price of trastuzumab emtansine is currently too high in relation to the benefits it gives for it to be recommended for routine commissioning in the NHS, even taking into account the end-of-life criteria and the patient access scheme.”
