Last week saw two critical issues for women and men living with breast cancer come to the fore. Both concerned access to drugs that have been shown to be effective at treating or preventing breast cancer.
But the treatments in question were at opposite ends of the scale: at one end, new, innovative but very expensive treatments; and at the other, older so called “off-patent” drugs, which are extremely cheap, yet still not routinely available.
Breast Cancer Now has been campaigning hard on both fronts through our Unlock Drugs campaign, but after a momentous week, it is clear that there is still much work for us to do.
In September, we were dismayed to learn that two breast cancer drugs, bevacizumab (Avastin) and trastuzumab emtansine (Kadcyla) were due to be removed from the Cancer Drugs Fund because they were too expensive to continue funding.
We were particularly concerned about Kadcyla – a new innovative, highly effective treatment that we know many women with secondary breast cancer have been taking for several years with very few side effects.
Breast Cancer Now petitioned Roche Pharmaceuticals, the manufacturer of Kadcyla, to reduce the price to a level that the NHS could continue to pay for.
Over 42,000 people joined us in this call and we were delighted to learn last week that – thanks to the huge show of public support – Roche dropped the price of Kadcyla and a confidential deal has been struck with NHS England, allowing Kadcyla to remain available to patients in England.
The result proved that pharmaceutical companies need to and can be more flexible on price.
But whilst it was great news for many patients, it is something of a hollow victory. Drugs for 18 different types of cancer, including Avastin for breast cancer, were removed from the Cancer Drugs Fund last week.
Whilst it is important to remember that any patients currently taking these drugs will continue to do so until they and their doctor agree that it is time to stop, these drugs will no longer be available to new patients. And many of the drugs that remain on the Cancer Drugs Fund, including all of the breast cancer drugs, remain unavailable to patients in Scotland, Wales and Northern Ireland.
The Cancer Drugs Fund is due to come to an end in March 2016 and so far we don’t know what will replace it. The charity sector committed to engaging with NHS England, NICE and the pharmaceutical industry through a Working Party set up to try and reform the drug pricing and access system.
However, this work was paused earlier in the year, before any proposals for a new system had been developed or agreed by the group.
Although we await an upcoming consultation from NHS England and NICE detailing proposals for a new system, the future looks very uncertain and it is clear that we are fast running out of time for there to be a meaningful consultation and for any proposals to be implemented.
We are continuing to put pressure on NHS England and NICE over the timing of the consultation and more importantly, what will happen when the Cancer Drugs Fund comes to an end.
Patients in England have lived with the uncertainty of the Cancer Drugs Fund for long enough – they cannot wait any longer for a system that works. And as for patients in Wales, Northern Ireland and Scotland, patients are sadly still denied access to these drugs at all.
Over the past few years, it has become clear that – in addition to very promising new drugs coming on to the market – older treatments originally intended for different uses have also been shown to be very effective in preventing breast cancer.
We have known for some time that the breast cancer drug tamoxifen is an effective preventative treatment and can reduce the risk of breast cancer for women with a family history of breast cancer by a third.
More recently, in one of the biggest research breakthroughs in recent years, the osteoporosis drug zoledronic acid (a type of bisphosphonate) has been proven to reduce the risk of breast cancer spreading to the bone by 28%.
However, there is evidence to suggest that drugs like this aren’t being made routinely available or consistently prescribed, despite being proven to be clinically effective and also very cheap.
This is because these drugs are not licensed for their new use and some clinicians are unwilling to take on the personal liability that would result if they were to prescribe them.
In order to fix this problem, Breast Cancer Now has been working with the MP Nick Thomas-Symonds to develop the Off-patent Drugs Bill, following on from a similar Bill laid before parliament in 2014 by the former MP Jonathan Evans.
The Bill seeks to remove the barriers to low-cost drugs which – like tamoxifen and bisphosphonates - have been proven to be used effectively for new uses.
And over the past few months the Bill has attracted huge levels of support: 41 leading clinicians signed a letter to the Telegraph in support of the Bill, 12 medical research charities, the British Medical Association, four medical Royal Colleges , MPs from every political party and over 9,000 members of the public all backed the Bill.
However, last week – despite the support both within and outside of parliament – the Bill was effectively blocked by the Government at its Second Reading in the House of Commons.
In the face of passionate arguments in support of the Bill from MPs of all parties, the Government Minister responsible, Alistair Burt confirmed that the Government did not support the Bill and would ensure that there would not be enough parliamentary time for it to be voted on.
The Bill will make no further progress.
Breast Cancer Now is extremely disappointed that the Government did not support the Bill. We are disappointed also, at the Minister’s reasons for doing so.
We simply do not accept the argument put forward by the Government that clinical decision-making could be hindered by this Bill or that it promotes the message that off-label prescribing is in any way unsafe.
On the contrary, the overall aim was to give medical professionals confidence to prescribe drugs that have been proven to be clinically effective for new uses and to try to standardise their use across the UK. Despite this setback though, the fight for fair and routine access to life-saving drugs goes on.
The Government has committed to taking forward some of the issues raised in the Bill through non-legislative means. And the Bill has aroused huge interest amongst the public, the medical community in parliament.
There is therefore a lot of work to do but for the Government, there is now no excuse and even greater pressure on them to take serious steps to addressing the problems raised in the Off-patent Drugs Bill.
We will be holding the Ministers to their words and make sure they turn them into action.