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A week and a half ago, I was sitting in a cafe in a whitewashed village in the south of Spain, transcribing a message from a rape survivor through headphones on my phone, wishing as I listened to such harrowing facts that I’d ordered the Irish coffee instead of the Moroccan tea. One of the village’s many hermandads (Catholic religious brotherhoods) passed by on a practice run for their Semana Santa (holy week, a mass obsession in Southern Spain) parade, and for several minutes, their drums drowned out the sound in my headphones. I couldn’t help feeling the whole thing was woefully appropriate; a woman’s voice silenced by a Catholic ceremony.
I’ve marched just three times, for two causes, all my life. The first I barely remember, but it was somehow connected to cancer services in the midlands in the 1990s. The other two were the 2015 and 2016 Marches for Choice. This Saturday, I want to march again, for science, and for evidence.
Stand up for evidence
Evidence is important. Evidence proves us innocent or guilty in court. Evidence settles arguments. Evidence is what makes 8 out of 10 women with breast cancer survive it, when it was not too long ago considered a death sentence. Until you understand the problem, you can’t find the best solution – and I believe that applies to any problem.
Not everything I write is about science, but an evidence-based approach always gets me the most trustworthy information. Fiction projects have folders with background information. When writing about women in theatre, I went number-hunting as an objective way to work out how big the problem was and if initiatives such as #WakingtheFeminists were working. I planned an article on the financial costs faced by Irish rape victims the same way I was trained to plan scientific studies. “What questions do you need to answer? How are you going to answer them? What’s the backup plan if that doesn’t work? What do people already know, and what information isn’t out there yet?” While I think the need for science and evidence is universal, I can’t help feeling that with the weight of religion and tradition on the side of misogyny, women in particular need to stand up for evidence – sometimes, we need tangible evidence to point to just to convince people that gender inequality is a modern reality.
I want to live in an evidence-based society, but we’re not there yet. An evidence-based society would look at any one of the many proofs that criminalising abortion hurts women without preventing them from terminating unwanted or unviable pregnancies and give us the right to choose. An evidence-based society would not have cancer patients turning up for chemo malnourished due to fad diets.
Cancer is a big earner for pharmaceutical companies. But there’s a shadow cancer economy, in which people make money selling ‘cures’ and perpetuating myths not supported by any evidence to vulnerable patients. Social media makes it very easy for news of fake cures to spread, and even seemingly harmless bits of false information can damage both a patient’s physical (e.g. the taking of a supplement that can interfere with chemotherapy) and mental wellbeing (patients blame themselves for their own bad luck – “If I hadn’t worn a bra, would I not have cancer?”).
Many organisations promoting ‘natural’ remedies are no more altruists than they are scientists – there’s huge money involved. In 2015, the global ‘wellness economy’ was estimated to be worth £3 trillion. In the US, $33.9 billion was spent out of pocket by adults on alternative medicine in 2009. Trustworthy statistics on the costs of alternative medicines for cancer patients are difficult to find, but individual oncologists have written of families forking out tens of thousands of dollars for treatments which fail (and occasionally are directly responsible for patient deaths) leaving families forced to sell houses and terminate their children’s education. It’s thought that about half the scientific studies reported in the media are wrong.
Accepting that this is “a post-truth era” isn’t good enough when patients’ health and lives are at stake. People with serious illnesses need evidence-based care; anything else is simply too dangerous. Our instinct is to trust people, especially people we can relate to, more than we trust an authority figure or a public health warning, and this might be one reason that people are so quick to trust a quick fix they saw on facebook over what ‘scientists’ are saying – who are these scientists, anyway?
Twitter trolls notwithstanding (the one who declared I was really a fashion blogger and therefore unqualified to talk about cancer has clearly never met me, or any of my carelessly selected outfits, in real life), the reaction I’ve had to my mythbusting articles about cancer has been overwhelmingly positive, and left me with the impression that people really welcome accessible communication from people with scientific credentials. The March for Science is an opportunity not just to stand up for evidence, but to put a face on science – to put an approachable face on scientists.
Research needs funding
My 22nd birthday was bittersweet. It was when, a few weeks befoe my final exams, I was offered funding for a PhD project researching breast cancer. But before my own immediate giddy thrill had had time to fade, I realised I was surrounded by people who had applied for funding and been turned down.
At just 21, and with no formal qualification other than a leaving cert to my name, I had found the Irish Cancer Society application process, with a very thorough written application followed by a draining interview by a panel of internationally known cancer experts, difficult and daunting. All the same, I was glad that funding for research was competitive, and that proposals and people were rigorously scrutinised. Many research projects are funded by the public, whether through taxes or donations (depending on the funding body), and that money needs to be channeled into worthwhile projects.
What I didn’t realise at the time is just how little money there is. I’d naïvely assumed that worthwhile research would always get funding from somewhere, but as I learned the week I got my project funded, and have seen over and over and over again, in four and a half years in a research lab, a lot of very worthwhile studies that could be carried out by extremely competent people just don’t happen due to lack of money to pay for them. For me, it’s all the more concerning because my area is so medically-focused that the studies I know of that didn’t happen aren’t chasing some abstract knowledge-for-the-sake-of-knowledge questions. They are trying to find solutions to real human illnesses, but without funding, they can’t.
Stand up for science by standing up for scientists
I sometimes joke that I arrived in the south of Spain because I was running away from my PhD. In reality, I graduated and took a few months break, during which I’ve been, amongst other things, writing up some of my PhD results for a scientific publication – not exactly a desperate leap away.
My Irish Cancer Society Research Scholarship, providing me with three years’ stipend and paying my fees, was the lifeline that made my PhD study possible. The problem is that any charity’s money is limited. The scholarship was three years, the PhD took four and a half. My college gave me three months stipend to live on while I finished up, but this still left me with an exhausting, anxious year of working more than full-time on my PhD in the lab and at home, and scraping together transport costs by running around the city picking up whatever grinds and part-time work I could. Nobody supported me more during my PhD, financially and morally, than my parents, but not everyone’s parents can or will be so wonderfully supportive.
To do a PhD is a privilege, but beyond the first year, PhD students in biomedical science do real work, and important work. Part of the work for my PhD, highlighted in this short video, carried out in RCSI’s Molecular Medicine with the help and supervision of many talented scientists (listed here), led to Bayer Pharmaceuticals funding a clinical trial for women whose breast cancer has stopped responding to standard drugs. Irish patients are the first in the world to access this new treatment. That’s something I will be proud of for the rest of my life. Still, it doesn’t add up, for me, that I did such important work for free, when, as soon as I’d finished, the state gave me €188 Jobseeker’s Allowance a week for nothing.
I’ve had a break, thought about my options, and I still think that research is where I want to be. But as I start searching for jobs, I can’t help but think of the problems. I remember several Masters-qualified scientists I know carrying out research on JobBridge. Scientists deserve more respect than that – but I understand the difficulty when vitally important research needs to be done or current scientists are struggling with impossible workloads, yet the lab can’t afford to employ more staff. Postdoctoral positions go from contract to contract to contract. I’ve seen such jobs advertised where the application, if done properly, would probably take about a week, and the contract is for three months. In a few years when I’m the other side of thirty, what if there’s a partner, a mortgage, a plan for a baby, something that means however important an area of research is and however passionate I am, to bounce between short-term contracts isn’t feasible anymore?
I’m sure that properly thought-out legislation (I might even say ‘evidence-based legislation’) could protect scientists better. PhD students currently seem to have all the responsibilities of an employee with none of the rights. Postdoctoral scientists who have accumulated a huge amount of knowledge and skills deserve job security and stability. Research as a whole needs more capital investment. These things will only happen if science becomes a political priority, and that is why we need this march.
The March for Science will take place in Dublin on April 22nd 2017.