CommonSpace columnist Siobhan Tolland says her rare medical condition Addison’s disease requires a smooth supply of medication to keep her healthy – the possibility of a No Deal Brexit and a delay in medical supplies therefore leaves her fearful
ONE of my favourite past-times was making mock plans for a zombie apocalypse with a friend . Hundreds of side-splitting hours were spent meticulously discussing escape routes. We had ethical discussions, strategic planning and practical discussions. And we had major disagreements. He was very much a zombie purist. I argued we should branch out and prepare for all apocalypses.
When we were both diagnosed with life threatening conditions our weird discussions inevitably changed. Stockpiling medicines and mapping out chemists on the escape route figured large. Hell, we even had surreal discussions about how to emergency inject ourselves and fight off zombies at the same time.
Unfortunately the diabetes took James, just months after we sat sobbing in the small hours watching the UK lurch to the right during the Brexit referendum count. You know, I don’t think even James’ meticulous apocalypse planning would have made him foresee what we are experiencing now. Sitting here sneakily stockpiling meds for the Brexit no-deal that might arrive.
I have Addison’s disease. I share it with JFK. It gave him that perma-tanned look. It’s a rare medical condition where my adrenal glands don’t work basically. When you get a shock, or hurt yourself you get that shot of adrenaline that pumps through your body to protect it from shutting down. My body doesn’t do that. I need to do it through medication.
I don’t talk about it much now. I grew tired of being vulnerable and became grateful that my medication gave me back energy and stamina so I could live a relatively normal life. I feel blessed and I pour all my extra energy into doing useful things. The memories of having to make a bed in stages with rest periods in between are etched deeply in me. Each task I do is a reminder that I once couldn't .
Before I was diagnosed, I was crawling to the toilet. I could barely hold a fork I was so weak. I had panic attacks all the time because everything was just too much. I had blinding days-long migraines. Walking round the corner to the shops was a victory to me. Every single little task was so much effort.
Once I was diagnosed I began to feel the immediate effects of medication. But it took years to get back to normal. I have days where I still need to rest, but generally, I actually feel great. The medication gives me energy and keeps me healthy. It allows me to live a full productive life.
But it’s more than that. The medication keeps me alive. Sounds melodramatic but that’s what it is. Any shock to my system is a medical emergency. As a medical report once bluntly put it, if I break my leg I can die within 20 minutes. I carry an emergency injection kit with me at all times to prevent that. Illness, infection, shock, any injury – no matter how minor - can lead to Adrenal crisis, where I go into hypovolemic shock and my heart just stops.
I say all this because Brexit – a no deal Brexit especially - threatens the supply of my medicine: my life saving medication. And the consequences are real and frightening. The free movement of goods is also the free movement of medicines. The making and supply of medication is an international process and medications tend to be packed and processed in various European countries. Brexit could cause huge disruption. A no-deal means we have no negotiated supply and have to start from scratch. It means a potential bottleneck of supply at customs on 29 March. That bottleneck is likely even with a new deal. Without a deal, it clogs even further and for longer.
The Addison’s Clinical Advisory Panel recommend a two month reserve supply for all people with Addison’s. That allows us to double our dose in times of illness and keeps us afloat for about 28 days should there be a shortage. Dr. Philippa Whitford MP states that new deals can see about a three week delay. A no deal will extend that by weeks. What I need then is a clear deal, robust plan and additional focus to prioritise the import of our medicines.
But, as with all things Brexit, competence is just wishful thinking. The Independent reported in August that NHS trusts are privately warning about medicine shortages. The Brexit Health Alliance has said that a no-deal Brexit or any deal that does not guarantee future cooperation on medicines could put public health at risk. Most worrying of all was Theresa May’s recent refusal to guarantee medicine supply in the event of a no deal Brexit.
So if you are on one of the World Health Organisation list of 433 medicines deemed as essential, how comforted do you feel with May’s answer to the medicine supply question being her “government is working hard for a good deal on Brexit”? Are you feeling comforted? Are you feeling safe? Knowing what you know about this UK Government, are you willing to put the supply of your life saving medication in their post-Brexit hands?
I am lucky enough to have the support of a very knowledgeable Addison’s Advisory group. I am knowledgeable enough to know the consequences of not having my medication. Professor John Wass from the Addison’s Clinical Advisory Panel states that, for any steroid-dependent patient, running out of my hydrocortisone is a medical emergency. Without medication I can die within 5 days. No medication is death. I don’t know how else to put this.
There is a real concern especially for short-life or special requirement medicines such as epi-pens or insulin. These can’t be stockpiled and so supply must be kept moving as seamlessly as possible across all borders.
As I write this it just feels so melodramatic. And I amn’t saying that hundreds of us are going to start collapsing in the streets due to lack of medication as Brad Pitt high-tails it through the crashed streets of Glasgow. But May's distinct lack of concern just reminds me how vulnerable I really am. And how little hundreds of thousands of us actually figure in her Brexit chaos. And, yeah. I’m worried. And, yeah, I’m stockpiling!
One December I was due to get a prescription of my emergency Ef-cortisol vials for injection. There was a local supply problem, however. The chemist was lovely and reassured me I would get it and phoned round all chemists looking until he found it. But I didn’t relax until I got it, and I did worry a lot about what might happen if I didn’t. That worry is a real one.
Imagine not knowing whether the supply of your life saving medication will continue? Imagine being told you might have to wait two, three, four weeks before your medication might arrive in the chemist? Are we willing to risk this? I sure as hell amn’t! And certainly not for an ultra right wing Brexit pushed by millionaire demagogues and incompetents!
Picture courtesy of Marco Verch
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