When nothing is certain
Just Treatment patient leader
“Can’t you be certain it won’t come back?”
I felt for my oncologist. I wasn’t the first, and would by no means be the last, patient sitting in front of him desperately hoping he could give me the answer I wanted – that my treatment had been successful and the cancer was never going to come back.
“You can never be certain” he said, before reassuring me that he had employed everything he had in his treatment bag to ensure I stood the best possible chance of a life free from cancer. Except he hadn’t been able to employ everything. Pertuzumab, a new wonder drug to sit alongside Herceptin, was not available on the NHS in Scotland at the time of my treatment, due to exorbitant pricing by Roche. Pertuzumab would have increased the level of certainty for myself and my oncologist.
Thankfully, and in part because of the efforts of Just Treatment and others, pertuzumab is now available in Scotland to my oncologist and any other anxious patient he has sitting in front of him. This was my introduction to the world of drug pricing, pharmaceutical companies that prize profits above patients, and the chronic unfairness and frustration of knowing there are drugs out there that can give people life and hope. Unfortunately this is rapidly becoming a world where that hope is only available if you can afford to pay.
Life for a post-cancer patient can be challenging. Navigating uncertainties is just one of the challenges – when you add in the uncertainties facing all of us post-Brexit though it takes yet another worrying turn…
We’ve become used to headlines warning us of shortages across the land post-Brexit. These initially focussed on potential food shortages, but the shift in the last few weeks has been to medicines. Lists are beginning to circulate of common medications likely to be in short supply – and for anyone reliant on these drugs for day to day living the stress of this uncertainty around availability must be horrendous.
To counteract the negative tone of much of the Brexit wrangling, we are being reassured by promises of new trade deals on the horizon – and in particular the likelihood of a trade deal with our old friend and ally, the USA.
But as stories of chlorinated chicken began to circulate, we’ve become aware of the real uncertainty around medications, drug pricing and the NHS.
We already know that Trump is keen for a trade deal that will bump up prices for many drugs for the UK, as he claims (wrongly) that this will lower prices for the American market. It will come as a surprise to no one that healthcare in the US is a broken system that relies heavily on a patient’s ability to pay for their care – but the idea that it could be fixed by making it harder for people in other countries to afford drugs is not only incorrect, it could also put people’s right to health in serious jeopardy.
Also on the table in a proposed trade deal, is a desire for existing regulations over pharma prices to be curtailed. One of the founding principles in Just Treatment is that where a drug price is ridiculously prohibitive, and the patent means the company holds the monopoly for years to come, we urge the UK government to consider a “Crown Use Licence”. This legal tool overturns a patent and allows cheaper, generic versions of the same drug to be bought and used by the NHS. A trade deal with the US could see price controls such as this being curtailed. The message from the US pharmaceutical companies is clear – nothing trumps profit. Not even the global right to health.
Despite a new law designed to prevent us crashing out of the EU with no deal, Boris Johnson continues to profess a certainty that we leave at the end of October and no deal is still on the table with all it’s unknown quantities. No deal would mean going to the US table in a weaker position as we will be desperate for a trade deal – and it seems like everything and anything could be up for grabs.
I have become used to living with uncertainty around my health and my future – my oncologist can give me no guarantees and I understand that and respect him for his honesty.
I find it much harder to live with the uncertainty that, were my cancer to return, my quality of treatment and the drugs available to me will be at the mercy of a broken system of drug pricing and desperate deal making between politicians, fuelled by the backing of a pharmaceutical industry that is unwilling to change its focus.
My oncologist can’t give me certainties – but I’m begging Boris Johnson give me some.