The yellow rose arrived from China in the 19th century, a delicate bloom characterised by a subtle scent of black tea.
It has always struck me as ironic that, as I mentioned on Mother’s Day, it was my mum’s favourite rose because its two defining qualities remind me of what she lost in life. The first was that characteristic scent – my mother lost her sense of smell – and the second was the tea rose’s ability to retain the intensity of its colour.
In the end, my mother’s vibrance was washed away in the tide of dementia, and we were all left like ripples on the sands of her experiences, marks that once had meaning but were now left-over imprints.
It was no surprise to me to read this week that researchers have discovered a link between the loss of smell and degenerative brain conditions such as Parkinson’s and dementia. I never bought my mother perfume as a gift. “Can’t smell it,” Moll would say airily, no matter what was thrust under her nose. Versace perfume, bad drains, rich coffee, burnt cabbage…it was all the same to her. It seemed innocuous, just another of her little eccentricities. This was many years before she was diagnosed with Parkinson’s, and long before she developed Lewy Body dementia, which affects 50-80% of Parkinson’s sufferers.
Around 145,000 people in the UK have Parkinson’s. Dementia is even more common, with 250,000 currently living with the condition, a figure that is expected to rise to one million by 2021 with the potential to reach two million by 2051. Imperative, then, that the pharmaceutical industry rises to the challenges of research. But can we hope for that when multi-billion-pound drug companies are driven by the same economic imperative of profit as, say, a company selling curtains for your windows?
Perhaps we should insist that drug company giants be held to higher ethical standards than other industries because of their uniquely powerful position in global health. Price fixing, the prioritisation of profit over drug accessibility. restricted patent laws, the control of competition…these are all matters that need public scrutiny, rather than a supine acceptance that the pharmaceutical companies can make knowledge a commodity which they hold the key to.
And here’s the moral biggie: do the companies who make billions out of public health have a responsibility to re-invest profit in difficult areas of research?
Just last year, the third biggest drugs company in the world, Pfizer, pulled out of further research into Parkinson’s and dementia. Granted, of the 99 trials they financed over 15 years, only one drug, Aricept, made it to the market. But this week, they announced profits of 3.9 billion dollars – up 9% from last year.
Years ago, I was invited to a private meeting by a leading American drugs company I had criticised in print. I wanted to write about it, though perhaps not quite in the way they imagined, so I accepted. It was slick, civilised – milk and one sugar, thanks – but it felt like a rich and too-smooth suitor using their charm and their wallet for rather seedier intentions.
They wanted to tell me about the safety of their product; I wanted to ask about the suicidal ideation that some of their patients experienced while taking it.
My mother’s dementia was a long and painful goodbye, a descent into some deep and lonely inner place where nobody could accompany her. The vivacity of her personality faded as the characteristic mask of Parkinson’s crept over her, gradually erasing each little part of her…. her humour, her sense of irony, her pride. Unlike the tea rose, the colour of her petals faded, wilted, and withered. Her eyes, in particular, haunted me, seeming to gradually wash clean of colour until they became almost translucent, and she looked at me then with only the vague sense of familiarity prompted by someone who meant something to her a long time ago, but she could no longer quite place.
“Can’t you smell that?” Whenever I hear that question it strikes fear in my heart and I sniff frantically, a wave of relief washing over when yes, yes, I can smell something. For the moment, my genetic roulette wheel is still spinning and I do not know the number where the ball will finally fall. So, I understand any fear people feel reading about dementia, but perhaps we all need to channel our fear into hard questions about research and development.
Just a brief look at the research programmes financed by the big Parkinson’s and dementia charities reassures us that important work is going on constantly. But how much quicker would we get there if the drug companies’ input was not principally about profit but about the quest for knowledge, a pulling of both human and financial resources for the greater good. For me, the yellow rose symbolises such optimistic collaboration. The meaning of the tea rose is said to be good cheer, renewal and hope – and without hope, life is bleak indeed.
Catherine Deveney is an award-winning investigative journalist, novelist and television presenter