Patient perspective: a fair price for life-extending drugs

Today, most deaths in breast cancer are caused by secondary breast cancer. However, the high costs of drugs to slow its progress and the limits of the Cancer Drugs Fund that currently provides access to such treatments in England, has led patient groups to call for greater collaboration to find a better way forward in the longer term.

Breast cancer is the most common cancer in the UK with 50,000 women diagnosed with the disease every year. The last few decades have seen massive improvements in breast cancer survival rates, with 85 per cent of patients surviving five years, compared to 52 per cent in the 1970s. Despite these improvements, 12,000 women still die of breast cancer every year in the UK.

The vast majority of these deaths are caused by secondary breast cancer – breast cancer that has spread outside of the breast to another part of the body. Secondary breast cancer is incurable but it can be controlled and many women live with secondary breast cancer for many years.

As we learn more about secondary breast cancer, new treatments are being developed that can target cancer cells while leaving healthy cells untouched, giving women with secondary breast cancer not only additional months of life but also a good quality of life. This means that women with limited time left can spend that time doing the things that they enjoy, such as working, caring for their families and spending time with friends. And, crucially, this means that families get more time with the women they love.

Unfortunately, while the new drugs currently being developed are certainly very effective, they are also incredibly expensive and cannot be approved for routine use on the NHS. In particular, three drugs for secondary breast cancer – everolimus (Afinitor, Novartis), pertuzumab (Perjeta, Roche) and trastuzumab emtansine (Kadcyla, Roche) – have caused great concern to Breakthrough Breast Cancer, as all of them have been rejected by both the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) in the last two years.

"The CDF was only ever meant to be a temporary solution and is currently only guaranteed until 2016"

The Cancer Drugs Fund (CDF) has been useful and these three drugs are all currently available to those that need them via the fund. However, the CDF was only ever meant to be a temporary solution and is currently only guaranteed until 2016. Recent announcements mean that the future of the drugs currently on the CDF is not secure, with drugs almost certain to come off the CDF. And finally, the CDF is only available in England, therefore patients in Wales, Scotland and Northern Ireland are being denied.

It is clear to us that the current system of drug pricing and approval is not working for breast cancer patients, which is why we've launched our Demand a Fair Price campaign. We're calling, in the short term, for the CDF to be extended until 2020, for the lifetime of the next Parliament, and for the drugs currently available on the CDF in England to be made available to patients in Scotland, Wales and Northern Ireland.

However, we know that extending the CDF is not a sustainable solution. In the long term, we want to see the pharmaceutical industry, the government and bodies such as NICE and the SMC commit to developing a system that allows drugs to be made available to the patients who need them at prices that the NHS can afford but are still fair to the pharmaceutical industry.

"This new system ... will almost certainly involve an overhaul of how drugs are priced and approved for use in the UK and require more flexibility from all sides"

We know this is a big call and we don't know yet what this new system might look like. It will almost certainly involve an overhaul of how drugs are priced and approved for use in the UK and require more flexibility from all sides, including NICE and industry. We're committed to playing our part and will do everything we can to help develop a new system. We need a similar commitment from industry, from the next government and from NICE and the SMC.

Since launching our campaign in mid-September, we've been overwhelmed by the response we've had from the public but also from the Association of the British Pharmaceutical Industry (ABPI), individual pharmaceutical companies, the media, NICE and NHS England.

This campaign is viewed by all parties as necessary and a helpful contribution to the ongoing dialogue about access to drugs. Breakthrough Breast Cancer has ongoing relationships with many individual pharmaceutical companies and, in the interests of transparency, receives some funding from partners in industry. Last year this funding comprised less than 0.5 per cent of our total income.

As a normal part of our partnerships with industry we have had open and honest conversations about our campaign and the issue of access to drugs more generally. While we, predictably, don't agree on everything, we do agree on the need for change and that the current system is not working for cancer. No one wants to see new and innovative drugs sat on a shelf – they can't do companies any good and, more importantly, they can't do patients any good either.

About the author:

Sally Greenbrook is senior policy officer at Breakthrough Breast Cancer. She joined Breakthrough as a policy and education officer in 2009 and became a senior policy officer in 2012, ensuring that the best services, treatments and information are readily available to patients.

Sally leads on Breakthrough's work on access to cancer drugs and sits on NHS England's Chemotherapy Clinical Reference Group and the Cancer Drugs Fund sub panel. She has also contributed to a number of NICE appraisals for breast cancer drugs and sat on NICE's Value Based Assessment working party.

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