Monthly Archives: December 2014

Is it time to curb the charity fear factor?

Simon Crompton

Simon Crompton

Last week I received a press release from the British Dental Health Foundation, aiming to raise awareness about mouth cancer. It had asked 2500 people to give the words they most associated with cancer. “Deadly”, “devastating” and “scary” were the three most common answers – although the word “curable” was also up there, said the foundation hopefully.

The survey got me thinking about cancer and the fear factor, particularly in the light of recent cancer charity fundraising campaigns in the UK. Ringing disconcertingly in my ears even at this moment are the appeals of Movember to fight prostate cancer and a national Cancer Research UK campaign telling us to “Stand Up To Cancer” (catchphrase: “It’s payback time”) which culminated in a national fundraising telethon in October.

Strong emotions

Stand Up to Cancer was a celebrity-focused effort to encourage the public to give to cancer research. But its telethon illustrated how charity fundraising can become fear-based. The heart-rending story of a young footballer being struck down by a medulloblastoma was repeated throughout the evening. A long comedy segment encouraged all men to get their prostate checked, until a casual query to the resident doctor revealed that it was only worth doing if you were in a high risk group.

The dramatic climax was when one presenter gave a monologue about the people he knew who had died of cancer, yelling “You know what, f*** you cancer.” “You’re like a seventies entertainer, you’ve touched a lot of people,” he said, “and there are ongoing operations to get rid of you.”

It was genuine, and reflected the feelings of many people touched by cancer. But it also demonstrated that, for all the good that cancer fundraising can achieve, there is a risk that it can perpetuate distorted and unhelpful messages – because they are the most effective way of getting people to give.

Research funded by Cancer Research UK has made a big difference to the lives and prospects of many patients, and it deserves every penny it can get. But as I watched Stand Up to Cancer I thought of those thousands of people who will receive a cancer diagnosis and the hundreds of thousands who are living with cancer, and I wondered how the message about the disease being deadly, a bully, the enemy within, impacts on them?

Evidence-based decisions

The message given out by Cancer Research UK’s excellent website has a very different aim: to give accurate information to help people take good decisions, based not on fear but on evidence.

I received a thoughtful response to my last blog post about the need for evidence-based decision-making about screening to prevent overdiagnosis. Dr Nicole Guiochet wrote that such arguments about risks and benefits are hard for healthy people because they have a fixed view about diagnosing cancer early. “He or she cannot imagine nor understand he or she will die with another illness because cancer remains the most frightening of all, even if detected early,” she wrote.

She is right, and public fear of cancer is entirely understandable. But does someone have to address the charity fundraising question: are the messages being sent out by the highly competitive world of fundraising holding back good understanding and good decision-making about cancer? Yes, the money raised does a lot of good, but is stoking up the fear factor too big a cost for those living with cancer or about to receive a diagnosis?

0

Why should older patients pay the price of failures of holistic care and HTA?

roger WilsonA debate between two medical oncologists over whether younger patients should get priority when it comes to access to very expensive drugs with the potential to prolong life was recently published online by Cancer World. In this guest post, Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet, argues that giving patients a voice in these discussion is the only way to move on from these “simplistic, inward looking  solutions”.

The push to use age as a determining factor in drug funding permissions is blatantly discriminatory. There are better methods and measures for discerning eligibility, if only someone researched them properly.

The pharma industry is not interested in this research. Its business model (which determines its approach to pricing) is encouraged by the current inadequacy of HTA and political decisions such as England’s Cancer Drugs Fund. Indeed the latter encourages higher prices.

When the current UK government came to power in 2010 they vowed that by 2014 we would have a value-based approach to funding decisions. Its nearly 2015 and there is no sign of it but as there was no research into how value could be defined let alone measured, its no wonder we are back to simplistic thinking about age.

The core issues here are about the holistic treatment of a patient. Just looking at the disease (albeit hosted by a person) does not take into account the needs of the whole person. This debate should be about integrating supportive care into oncology practice, about losing the barriers between palliative care and oncology, about educating patients on the balance between cure and end-of-life care so that when disease is truly incurable patients make rational decisions themselves.

Another cycle of chemo given to a dying patient is immoral. Living and dying have to become palatable points for discussion. This will deliver benefits for individuals and society and could well cut drug costs. While politicians, healthcare administrators, academics and doctors are the main voices on this issue simplistic inward-looking solutions will result.

Get patients involved, introduce some earthy common sense.