Lizzy Buchan: Time to discuss end-of-life drugs rationally

The SMC has caused anger from campaigners before, turning down other treatments such as the oral pill, Fingolimad, for those with MS, on cost grounds in 2012. Picture: TSPL

IT is difficult to have a rational conversation about cancer, particularly the incurable kind.

How can we be rational when the sum of our own or our loved ones’ existence might be measured in days and weeks rather than years?

Many people would want as much time as modern medicine can give them, to do all of the things they thought that they would have a lifetime to accomplish.

Extraordinary advances have been made in terms of treatment, which means that drugs to tackle secondary cancers - where the disease has spread to other parts of the body - are becoming more of a dilemma.

Campaigners were bitterly disappointed when the Scottish Medicines Consortium (SMC) chose to reject the breast cancer treatment Afinitor this week, which can give precious extra time to patients with incurable cancer.

The SMC said there was not enough evidence of the drug’s clinicial benefits, but it is likely the large price tag is what is putting them off providing the treatment for routine use on the Scottish NHS.

Controversially, the drug is available to patients in England and Wales.

This is the fourth secondary breast cancer drug to be rejected by the SMC in the last year, since it introduced a new consultation process called PACE to improve access to end-of-life drugs and treatments for rare diseases.

Charities have called for a rethink on this process in the wake of the Afinitor decision, as they claim it is “failing” breast cancer patients north of the border.

This desire for progress and the fallout from a complex restructure must be carefully weighed in the balance before any rash decisions are made.

These treatments are not “wonder drugs”, but they can provide someone with a chance to set their affairs in order and say their goodbyes.

Who is to say what value for money means in this context, as a few months can mean everything to dying patients.

But emotions cannot be allowed to cloud judgement on decisions on end-of-life drugs which will impact on more and more of us as Scotland’s ageing population grows.

It is important to acknowledge that the SMC faces a dreadful financial balancing act, as the cash-strapped NHS already spends more than £1.3bn on drugs from ever-shrinking funding.

The regulators are not the only ones involved in this complex debate. The drugs companies also need to take a long hard look at their own prices.

It is not their responsibility to provide their hard work for free but there is little to be gained if no one can actually buy their drugs due to prohibitive costs.

These factors need to be carefully considered as they can form part of the wider conversation on palliative care that is starting to rumble in Scotland.

The PACE process has had its successes, such as promising treatments for prostate cancer and stomach cancer which were approved on Monday.

But this outcry suggests that more could be done to ensure that the views of patients and clinicians are being heard.

The SMC held a public meeting last year to discuss whether to approve the drug Kadcyla for breast cancer treatment, after it had been hailed as an innovative way to help patients.

Perhaps this sort of public engagement could be reconsidered, although there are no easy answers ahead.

So yes, it is difficult to have a rational conversation about these treatments. But we must try, for everyone’s sake.