A huge cancer-centred story has hit the news last week. Jennifer reflects on the public's reaction, the law, discrimination, and what we have learned from our cancer-patient community in response.
This week the former supreme court justice, Jonathan Sumption, has faced criticism for saying that the life of Deborah James, who has stage 4 metastatic bowel cancer, and all those with a similar medical history, is ‘less valuable’ than others, in his anti-lockdown arguments. Branding him “horrible”, “inhumane” and “morally bankrupt”, it has become clear what others thought about his comment, but is he alone in his thinking?
How does the law value life?
There have been many attempts to consider Lord Sumption’s opinion (Supreme Court Judges are never shy of an opinion or two), in light of his legal expertise and our unprecedented times. His is a world of QALYS (Quality Adjusted Life Years) and DALYS (Disability Adjusted Life Years), after all.
In brief, QALYS is a legal measure used to calculate the value of public health interventions (and in some cases, justify control measures, or lack of them, in the workplace). DALYS, is the measure that takes into account the number of years lost to an early death and the years lived with the disability or disease responsible for the premature death. The calculations takes life expectancy into account (assigning a higher value to a younger person, making an older life less valuable) combined with the quality of life for the remaining years (making the life of someone with a debilitating disease less valuable than that of someone in fine health).
Discrimination against cancer patients is not new
Lord Sumption is not a fan of lockdown for all. Public health decisions have to be taken, they are inconvenient, protect the most vulnerable and have consequences for us all. Our lives have equal value, we all stay home, behaving as though we are infected. This is acceptable to our moral values. We are all in it together. Lord Sumption’s statements challenged this and we are less than impressed.
So, why the outrage now? Is it because the woman being discriminated against as a result of her medical history is visible? She is real, a person and we can see her? Discrimination against those affected by cancer has angered me (and them) for a very long time.
My first exposure to the absolute injustice was when I was asked by my local hospital to create a skincare collection for cancer patients. The beauty industry was worth billions and there was no specialist skincare collection for cancer patients. My indignation fuelled the creation of such a collection, and it has been my life’s work since.
Next came the discovery that those affected by cancer are turned away from spas because of fear, a lack of therapist training, misinformation and inadequate insurance policies. So, I created accredited qualifications to allow therapists to welcome those affected by cancer for a ‘normal’ spa experience (one of which, evidence shows, provides a tangible, measurable benefit). These are merely examples in one industry.
Here, my ability finds it limits. I can do nothing to accelerate the licencing of drugs to save the lives of secondary cancer patients. As Jo Taylor, Founder of MET UP UK, the only patient advocacy group in the UK, tells us that the median life expectancy of a person with secondary breast cancer is two to three years. It can take longer than two years for drugs, already licensed in the US, to become available in the UK. Some areas of the UK have excellent care for those with a median life expectancy of two years, others do not.
Many of those affected by cancer are like Deborah James. They have children and lives and jobs and families. We are told that their lives are less valuable, when using the Courts’ methods of calculation, and we are speechless. Is it not all the more devastating to realise that people affected by cancer have lives less valued?