By Larisa Damian
I learnt the word ‘tumour’ when I was 8. My father was diagnosed with a cancer that metastasised to the brain and passed away 9 months later. It was the early 90’s in post communist Romania, an era when health care for cancer patients was hindered not only by the limitations of technology and research at the time, but also by the lack of access to the best diagnosis and treatment options available. I cannot help thinking that with the knowledge and advancements in science acquired in the intervening years the situation could have looked different. Maybe with today’s surgical paraphernalia his tumour would have been operable. Or maybe his brain would still have been too affected to operate on, but the new pharmaceutical therapies and a better palliative care approach would have helped to lessen his suffering. Any which way, I would assume that if my parents had access to the information on this disease that is accessible to the public today they would have understood that the changes in his sense of wellbeing that took place over the year that preceded the diagnosis were abnormal and would have caught the tumour at an earlier stage.
As an individual, as a daughter, this is not a fair story. As a global health professional in training though, I couldn’t be happier to see such progress in tackling a disease, despite the fact that there is still a difference into what is accessible for cancer patients in low/middle income countries compared to high income countries. It’s amazing how much the situation has improved in these past 2 decades since my father’s diagnosis and the same trend has been observed in the approach to other NCDs, such as heart diseases and diabetes.
Now let’s stop for a moment. Allow me to engage you in a game. Imagine that there were patients suffering from disorders that have known a similarly tremendous advancement in understanding their underpinnings, but that these patients’ access to health care was hampered by insufficiently available public information, and a level of stigma so high that it affects even the clinical personnel who are supposed to treat them. Imagine that someone you knew was affected by illness and they wouldn’t seek help because they didn’t know they were sick, or dismissed their symptoms as being mere figments of their imagination. Even worse, imagine that they or their families and friends realized they were ill, but were too afraid or embarrassed to ask for medical assistance. Imagine that there were patients who struggled with their disorder without benefiting from adequate treatment, in spite of the availability of new age drugs and other effective, evidence-based therapeutic interventions. Imagine that an 8 year old child would lose her father to suicide, after a long, difficult battle with depression that could have been addressed if only he had benefited from specialized health care. As an individual, as a daughter, as a global health professional in training, this is not only an unfair story, it is utterly appalling. Unfortunately though, this is not a simple game of the imagination, but a submersion into the stark reality of the too many people who are suffering from psychiatric disorders.
We live in exciting times. Last month researchers at the University of Washington at Saint Louis published the results of a study that indicates that schizophrenia is not a single disease, but a cluster of 8 genetically separate disorders, each one with its own symptoms. These genetic variations predict a 70 to 100 percent risk for a person to develop the disease, making it almost impossible for carriers to avoid the diagnosis. Still last month, another article published by scientists at Northwestern announced the development of the first blood test to diagnose depression. The internet and social media help us connect more easily than ever. Open access and initiatives such as Coursera slowly reshape the way we access information. Movements like TED talks bring to light examples of people who tell their own story of psychiatric illness or of scientists who better clarify what we’re talking about when we’re talking about mental health. From a global health perspective Vikram Patel of King’s College’s Institute of Psychiatry eloquently discusses the struggles faced by developing countries, whereas Joseph Pierre of UCLA addresses the fear of over diagnosis expressed in the Western world, especially in relation to the controversy emerging upon the launching of the fifth edition of the Diagnostic and Statistical Manual. As I am writing this, it is mental health awareness week in both Canada and Australia. At a more policy related level, Canada has taken the lead in implementing a fantastic strategy to address mental illness and, the WHO has launched a comprehensive action plan.
I just received in my mailbox the October issue of the Psychologist, a BPS monthly publication. It’s a special edition focused on the myths and facts around autism. I haven’t gotten the chance to read it as yet, but I did feel privileged to have even had the chance to be aware of it. It was a reminder that I am part of a community that acknowledges the existence of the elephant among us, and that pretending it doesn’t exist will not make it disappear. But the fact that too many elephants go ignored in their rooms baffles me. As the illustrator Marc Johns puts it, I am truly surprised that we seem to get by without polka dot elephants, serving us pie.
There isn’t any doubt that things are changing for the better, but I am afraid that we’re running out of time. I’m not saying that all the facts mentioned above (or many other similar one) are not good enough, because they are great. What I am saying is that if we want this information to reach the people who need it the most we must try harder. As academics or as professionals in the field we have to give up on the rotten practice of publishing articles for one another only for the sake of science and of circulating the information only among ourselves, and we have to give up on the passivity of waiting for our patients to visit our offices. It is our mission to take action. Most importantly, what I am saying is that it takes a lot of time even for the most efficient policies to have an effect and we’re already running behind time. So I take advantage of my privilege and I call you all to join the battle against mental illness. The time is now.