Manufacturers and Holyrood must ensure women can access life-changing treatments, says James Jopling
More than 1,000 Scottish women die every year from breast cancer, the vast majority from metastatic breast cancer. Finding out you have metastatic breast cancer and the cancer has spread to other organs and tissues away from the breast is devastating. At this point the disease is usually incurable. So that’s why Breakthrough Breast Cancer was deeply disappointed on behalf of those affected by the disease at the decision made on Monday by the Scottish Medicines Consortium (SMC) to reject the metastatic breast cancer drug everolimus, more commonly known as Afinitor.
Afinitor can’t cure metastatic breast cancer, but in some women it can slow down the progression of the disease to keep a patient going as long as possible with a reasonable quality of life. Trials have shown it can slow the progression of cancer for up to almost a year, which is an astounding improvement over alternative treatments. We hope that further research will show that it can extend life as well. For most women, side effects are also mild when compared to other treatments, allowing women to continue doing the things they care about, such as spending time with loved ones, working or caring for family. We think it is one of the most exciting breast cancer treatments to come up for approval in years. Unfortunately, the SMC rejected it on the grounds of cost, deeming it not to be value for money.
Manufacturers need to set prices sensibly
This decision strikes at the very heart of the current debate around access to medicines, and to cancer medicines in particular. Here we have a drug that would mean so much for women but which is too costly for the NHS in Scotland to fund. Clearly the SMC cannot, and should not, approve every medicine at the price that a pharmaceutical company submits, but it is incumbent on both parties to find a way to make effective drugs available. Organisations such as Breakthrough can make huge leaps forward in research in treating breast cancer, but these advances are squandered if the resulting treatments can’t be approved for use in the women who stand to benefit from them. Manufacturers need to set prices sensibly and the SMC needs the ability to place more importance on the wider value to individuals, families and society that some new drugs can bring.
So we were heartened by the recent report of the Scottish Parliament Health Committee’s inquiry into access to newly licensed medicines. The report recommends that the SMC is empowered to consider a wider assessment of “value” when assessing a new drug beyond its current approach. We think value should mean taking account of benefits from the drug, such as providing extra months of precious time at the end of life in late stage cancer, and placing an emphasis on drugs that can slow progression of disease.
To an extent the system currently does allow for the consideration of some sense of value through the use of what the SMC calls “modifiers”. But the use of these modifiers has been criticised for being patchy and inconsistently applied. So we agree with the Health Committee recommendation that the Scottish Government should look at reviewing how these modifiers are applied, particularly in relation to factors such as end of life and innovation.
Wider access to life-saving medicines
We welcome the recent independent reviews for the Scottish Government on medicines approval, not least the recommendations to make the system more transparent and improve patient involvement in decisions. However, relatively little was said on how to improve access. The Scottish Government now has the opportunity to adopt a wider concept of value as quickly as possible into the medicines approval system in Scotland.
Over the next 12 months two further highly effective medicines for metastatic breast cancer are likely to come before the SMC.
Both are innovative. Both treat patients at the end of life. They both offer women with a devastating diagnosis of metastatic breast cancer dramatic improvements in the time before disease progresses.
We hope that embedding a real sense of value within decision making will increase the likelihood of effective cancer medicines like these being approved, giving women with metastatic breast cancer the chance to live their lives to the fullest for as long as possible.
• James Jopling is Director for Scotland at Breakthrough Breast Cancer www.breakthrough.org.uk/scotland