- In 2014, wife and mother Beryl Davies was diagnosed with ovarian cancer
- Because of the rarity of her condition, the NHS refused to fund medication
- Out of the £5,000 her family paid for medication, a fifth went down the drain
- Now her husband Derek has launched a petition to stop this common issue
Derek Davies loves his wife with a rare passion, so when 73-year-old Beryl was diagnosed with cancer two years ago, he was determined to help her fight it.
The self-made businessman set about trying to understand her condition and get her the best available treatment.
This has led him to a drug which, against all the odds, has had a dramatic effect on Beryl’s condition — a rare form of ovarian cancer usually found only in babies and young women.
But it’s come at a huge financial cost. So far, the couple have had to spend tens of thousands of pounds on the drug that has kept Beryl alive.
Not only that: for every dose of the drug they buy, which costs them around £5,000 every few weeks, around £1,000 of it has to be thrown away.
This is not an unusual situation. Cancer doctors say more than £100 million-worth of cancer drugs are thrown away every year in Britain.
This is because the drugs come in vials containing a pre-measured dose. Often patients need only a proportion of one vial — yet in order to prevent contamination, the remainder can’t be saved for the next time or used for another patient. Instead, it must simply be thrown away.
As well as affecting drugs that are available only privately, as in Beryl’s case, this colossal wastage also occurs with drugs provided on the NHS.
And it’s an even bigger issue in the U.S. A recent study published in the BMJ reported that £1.2 billion-worth of the 20 most frequently used cancer drugs that come in glass vials, including common breast cancer chemotherapy drugs are discarded every year in the U.S. because up to 30 per cent of each pre-measured dose can’t be used.
These drugs are packed in glass vials to keep them sterile. They are then diluted and given by intravenous infusion, with the precise dose calculated according to the patient’s weight.
But because any leftover drug from an opened vial may get contaminated, it can’t normally be used to treat a second patient — or saved to treat the same patient at a later date.
‘They could sell the drugs in a wider range of vial sizes, but they don’t,’ says Professor Karol Sikora, one of Britain’s leading cancer experts.
‘It’s completely outrageous that Big Pharma is getting away with this practice for drugs that cost thousands and thousands of pounds a dose.
‘Obviously it is hitting people who are paying for their own treatment, but it is also hitting the NHS.
‘You can’t recycle the leftovers by giving them to another patient, without risking legal problems if a patient suffers an adverse event that could have been caused by contamination.’
In Beryl’s case, the drug is pembrolizumab (the brand name is Keytruda), which is a form of immunotherapy — a relatively new approach to cancer that boosts the body’s own defence systems.
Since Beryl started taking it earlier this year, it has helped keep her cancer at bay.
It was in March 2014 that Beryl was diagnosed with small cell cancer of the ovary, after she developed a ‘huge pregnant tummy’ due to fluid build-up as a result of the cancer.
This type of cancer is caused by a random genetic mutation — there have been only 300 documented cases worldwide. Beryl is believed to be the oldest patient identified with the condition. (The average age at diagnosis is 24.) Most patients are unlikely to survive more than two years.
At first, Beryl was given three cycles of chemotherapy. ‘But it made me feel so ill and it didn’t work,’ she says.
Now, thanks to the immunotherapy drug, Beryl has been defying expectations.
On a recent holiday in Devon, she managed to walk up to eight miles a day. Yet it has come at a cost.
Because of the rarity of the condition, there has been little research carried out into Keytruda and it is not licensed for use on the NHS for her condition.
So she and Derek, who have been married for 24 years and live in Foulridge, Lancashire, are having to fund the cost of the drug.
The couple — who each have two adult children from previous relationships (one of Beryl’s sons, Simon, died nine years ago from bowel cancer) — are looking at spending all the savings they had put aside to fund a comfortable retirement on the drug.
So far, they have spent more than £46,000 for Beryl to have regular doses. They pay thousands of pounds for a private prescription of the treatment every three weeks at the Christie Cancer Centre in Manchester.
‘It’s made such a difference,’ says Beryl, who left school at 15 to work in a woollen mill. ‘Most days I feel completely normal, or what I remember as being normal.’
Despite her successful response to the drug, Beryl and Derek have been told the cancer is starting to grow again. The search is now on for a new treatment, which they will again have to pay for.
And once again they will have the same problem of having to pay for more drugs than Beryl can use.
‘We can keep going with paying for the drugs for another 12 months — and after that we can sell the house or downsize if that’s what we have to do,’ says Derek, a miner’s son who sold his electrical wholesale company ten years ago.
Even though Keytruda has been costly, thanks to Derek’s persistence they have been paying less than they were originally told it would be.
‘At first we were told by the hospital that the drug would be £7,000 for a three-weekly dose,’ says Derek.
‘I contacted the manufacturers, Merck, to ask if Beryl could be treated free of charge on compassionate grounds or in the interests of researching the effects of the drug in this rare cancer. But they just said no, that wouldn’t be possible.
‘In the end, we were told we could have it at a discount of £1,766 per 50 milligramme vial.’
Beryl, who weighs 8½ st, was told she needed a dose of 115mg. This meant they would have to buy three vials each time, at a cost of more than £5,000, but most of the third vial was being discarded.
‘It’s incredible that almost £1,000-worth of this drug was being thrown away from every dose,’ says Derek.
However, after some more digging, he managed to bring down the cost still further.
‘I discovered that the vials don’t contain the exact 50 milligrammes — they always contain a bit more.
‘I passed this on to Beryl’s doctor and he has agreed she can probably get the same benefit by just having two vials, which brings it down to £3,532 per dose.’
Beryl’s doctor at the Christie Centre in Manchester, Professor Paul Lorigan, presented a study at the annual global meeting of the American Society of Clinical Oncology, the world’s biggest cancer meeting, showing millions of pounds could be saved without reducing Keytruda’s benefit if doctors opted for similar lower doses.
‘This is an issue that needs to be brought to public attention,’ says Professor Peter Bach of the Sloane Kettering Cancer Centre in New York, who carried out the recent BMJ analysis that identified the £1.2 billion of cancer drugs being thrown away in the U.S. every year.
‘Regularly and systematically discarding expensive drugs [goes against] efforts to reduce spending on healthcare,’ he says.
However, a spokesman for the drugs company Merck explained wastage was unavoidable.
‘New drugs are put on the market as quickly as possible, and precise dose requirements only become clear with experience. We are planning to recommend a flat 200 mg dose for everyone.’
But Professor Lorigan said this will merely increase the cost of the treatment without improving its effectiveness.
The National Institute for Healthcare and Clinical Excellence (NICE), which approves drugs for NHS use on the basis of their cost and effectiveness, has approved Keytruda for melanoma skin cancer only.
A NICE spokesman acknowledged that a proportion of some cancer drugs will be discarded, and said this is taken into account in working out whether they are good value for money, but she said it is not NICE’s role to lobby for drugs to be more efficiently packaged in the first place.
Derek Davies has started an online petition asking the Government to give patients with rare cancers free access to cutting-edge treatments. https://petition.parliament.uk/petitions/128777