Drug sharing in desperate times

My anxiety has refused to let go of me. It has been firmly rooted from my earliest memories, and has travelled with me through time and across continents. Trying as hard as possible to ignore it only led to deeper shame and self-stigmatisation. Self-help books brought me temporary relief, and adopting a defiant openness as an optimistic mental health advocate eased the pressure.

My hyper-awareness and research skills led me down a rabbit hole of self-diagnosis, so that when I received an official clinical diagnosis, I wasn’t shocked in the least. The years of deciding to seek medical help and actually doing it were 2016 and 2017, blurring into each other as I dealt with the grief of my father’s death and the realisation that in spite of finishing a PhD in immunology, this field just wasn’t for me.

The doctor and I agreed that I would try out a digital self-help platform first. Shortly after, I requested medication. Long gone, at this point, were my early-adult fears of ‘having’ to go on medication. “Let’s start with the lowest dose… 50 milligrams,” said the doctor.  

The calm before the storm

Two weeks in, I remember walking around wondering if this was the state of calm and togetherness those without mental health struggles were blessed with in their daily lives. It is hard to put into words the feeling of “the edge being taken off”. It could be the disappearance of the lump in your throat, or your reflux dissipating. Your lower back feeling less tight, or your sciatica easing. It is a feeling firmly lodged in your mind that you have a chance of moving past survival into actually living. It is a tangible hope.

I had had the privilege of paying just under £9 for a two-month supply of my prescription over a roughly two-year period. Things changed abruptly in August 2019. My spirits were high, as I had just come out of a temporary post as a laboratory technician and was finally moving into a permanent dream job where my role would be student-facing. 

Then my visa was denied by the UK Home Office, and things quickly spiralled. I was informed that I would be deported, so I had no legal right to work, and could be charged for healthcare services. The health surcharge I had paid was automatically returned to my bank account, and concurrently, my job contract was rescinded. 

While I sought legal counsel, I was advised to lie low – both by my legal team, and by my anxiety. My digital footprint would argue otherwise, but in real life I took this advice on board. With my passport being held by the Home Office, I had no legal identification on me.

Incidentally, I had already made plans to move to a new house in September 2019 in order to be closer to what would have been my new place of work. This meant that I moved away from the doctor’s surgery I had been registered with for over a year. So I was not registered with a doctor’s office close to my new residence, and was scared to even attempt registration because of my confusion around data-sharing between the NHS and the Home Office.

The hypervigilance, both internally and externally, started. I was aware of every itch and cramp. I started having more contact dermatitis flare-ups. Suddenly I was getting, or feeling, ill with an alarming frequency. Being aware of psychosomatic illness in my logical mind didn’t stop the physical symptoms. But then I realised that I would no longer have access to my sertraline prescriptions.

Fear under the hostile environment

I now accept that I could have probably tried to get myself registered at a doctor’s office, or at least scoped the scene on what it would take for a person caught up in the immigration system to be able to access the medication they need. Simply put, at that time I was not thinking clearly. I was overwhelmed and scared by the knowledge that the hostile environment turns so many service providers into border guards.

The hostile environment, as defined by the Joint Council for the Welfare of Immigrants (JCWI), is “a set of policies introduced in 2012 by then-Home Secretary Theresa May, with the aim of making life unbearably difficult in the UK for those who cannot show the right paperwork”.

The JCWI further explains how the hostile environment impacts the most basic of activities in everyday life: “…the government set about trying to cut undocumented migrants off from using fundamental services including the NHS and the police, and make it illegal to work, or for a landlord to rent them a property. Doctors, landlords, police officers and teachers are tasked with checking immigration status, and often people who look or sound ‘foreign’ are asked to show their papers in order to rent a home or get medical treatment.” 

When for months I was paranoid that patrol cars driving past my neighbourhood were keeping an eye on me, I preferred to take my chances without seeing a doctor. I am so grateful for my friends and family, who would take it in turns to stay on the phone with me through panic attacks and terrible anxious periods, and for the new lawyer, who’d only just taken on my case, who would call me to persuade me that I was indeed safe. 

I still had no clue what I would do when my medication ran out. On at least two occasions I’d stupidly tried to ration them, resulting in intense suicidal ideation. 

Robin Hood to the rescue

Towards the end of 2019 I tweeted about my frustrations and my lack of NHS access. Shortly thereafter, someone aware of my mental health history reached out to me and, unprompted, promised to send me some medication.

This Robin Hood gathered 12 weeks’ worth of sertraline, lovingly wrapped and delivered through my letter box. Robin Hood gathered this stock from their friends who ‘donated’ their half-used blister packs. In the months since, I have received small packages from different friends of my Robin Hood, all of whom are donating their sertraline to me.

At least one has also come with a letter of solidarity, which I will keep for ever. Yes, this is indeed an ethical grey area, but I truly need this medication and cannot imagine how I would’ve coped without it in my precarity. 

Research from early 2019 carried out on adult New Zealanders shows that difficulty in accessing medication is one of the factors leading to “lending/borrowing” prescription medication, for their intended therapeutic usage. This research highlights that sharing can have adverse effects such as allergic reactions, but the researchers’ focus was on interrogating risk factors that place individuals in the position where they need to obtain prescription medication this way in the first place.

Of the 232 respondents, 55.6 per cent reported that they had “borrowed” prescription medication from someone else, while 45.9 per cent reported that they had “lent” prescription medication. The most commonly borrowed prescription medications were painkillers, allergy medicines, asthma medications and antibiotics.

The issues of access underpinning this borrowing behaviour, which have been previously described, include not being able to afford a doctor’s fee. These studies, led by Dr Kebede Beyene, serve to evidence an intuitive notion: those of us who need medication and simply cannot access it are likely to ask for it or accept it from those who are willing to give it to us.

Beyene and colleagues further get to the heart of the matter, stating that it isn’t enough to only improve access to medications: the structural barriers within healthcare must also be addressed.

The waiting game

We are currently in a global pandemic. The implications are critical for those who already exist on the margins in this context of healthcare access. Social justice includes improving access to healthcare, optimising healthcare systems, and providing better working conditions for healthcare workers.

When my Robin Hood sent me my February 2020 batch, I was shocked to find a five-month supply. I commented that I hoped within a five-month period I would be able to have my situation sorted out, choosing to believe I would finally be able to see a doctor again.

Neither of us could have known that mere weeks later, global healthcare systems would be focused on Covid-19, and there would be a series of lockdowns. Unfortunately, I would have to ask for more medication because I was still waiting for resolution. Each time I asked, I hoped it would be the last. 

The anticipation I had when my appeal was listed for the last quarter of 2020 got dashed when the appeal had to be adjourned for reasons beyond my control. This means that I am once again waiting for a date to be listed.

I know that with the current state of things, it may take a while for me to access healthcare. I also recognise that continuing to borrow medication is not sustainable, and I will need to register at a GP surgery soon. However, I am grateful for the kindness that has been shown to me and appreciate that my Robin Hood has bought me time to figure things out until I gain some stability.