Shiny new things such as immunotherapy are bound to attract attention for their extraordinary ability to help some patients but people need to dial down their excitement, the Clinical Oncological Society of Australia (COSA) ASM was told.
Professor Ian Kerridge, a haematologist at Royal North Shore Hospital and professor in bioethics and medicine at the University of Sydney, told the meeting a ‘collusion of interests’ resulting in hype and spin was skewing patient expectations.
There was competition between universities and research institutes, researchers positioning themselves for grants, pharma wanting to get their product to market, clinicians wanting to do something for their patients, patients desperate for a cure and media wanting everybody to read their news of the latest ‘breakthrough’.
“It’s almost like everybody could do with a good lie down,” he told the limbic.
He said the result was that patients consistently over-emphasise the benefits of therapy and under-emphasise the potential toxicity of treatment.
“These drugs really do seem to represent significant changes in outcomes for a range of different cancers. They provide benefit for some patients but not all patients. They provide benefits in some diseases but not all and they provide not just benefits but some toxicities which in some patients can be considerable.”
“My concern is that patients are hearing the positive messages and getting excited about that but making two assumptions. One, that immunotherapy is safe, which is not true. And two, that immunotherapy appears to have promise therefore it will definitely work for them.”
He said clinicians, researchers and their institutions could not blame the media for raising patients’ expectations, without looking at their own role.
“Whether they are checkpoint inhibitors, immunotherapy or targeted therapies – things that are new and hold great promise and appear to be represent paradigm shifts, they are the ones that people will be excited about in their abstracts or press releases, pharmaceutical industry information or clinics. They are the ones patients in desperate situations will attach more hope to.”
“None of this is a criticism of science or medicine or checkpoint inhibitors. I use them myself and the work I do as a bone marrow transplant physician is way more invasive than most types of medicine.”
“I’m not the moral police but everyone does need to take responsibility and we need to see that there is a problem.”
Professor Kerridge said there was a genuine need for physicians to be honest and get much better at explaining uncertainty and the limits of data to the patients sitting in front of them.
“We have to change the dialogue a bit. These medicines are great however the average survival benefit in solid tumours is about 2.2 months. We don’t know long-term toxicity.”
He added that where there was an expectation of benefit in the community and user groups clamouring for action, there was the potential to erode usual standards of evidence.
“Governments all over the world have set up separate programs to fund cancer drugs outside of standard regulatory processes. All of a sudden there is an assumption that early access is good in and of itself and that is very expensive but also potentially problematic.”
He called for everyone to reflect on the language they use to describe new therapies and the degree to which their ‘enthusiasm and hubris’ may cloud the impression they give.
“There needs to be rational, considered discussion otherwise patients will get on a plane to Mexico and have poorly controlled immunotherapy, bankrupting their children for something that gives six weeks at the very most and may not work.”