When we discuss the barriers to accessing OST medications, most often it’s the barriers of making it to the clinic, through the clinic’s hoops, or the pharmacy. Money, transit, and the stigma associated with walking through the doors of a drug service or being spotted on supervised consumption all come to mind. Much less commonly spoken about are the ways in which modern global supply chain dynamics can produce shortages. These impact a great many things in our lives, but unlike most – and even most other medicines – OST medications are subjected to the sort of regulations that make overcoming shortages significantly more challenging.
Supply chains are likely to be disrupted more and more regularly as a result of things like climate change-related extreme weather events, and while many of us will find workarounds to these disruptions as part of our new ‘normal’, what happens when we’re powerless to do so?
Anna is a Release service user who was recently impacted by a medication shortage that meant her prescribed methadone tablets became unavailable. She was originally prescribed injectable methadone, but transitioned to tablets as that was deemed safer by her prescriber. When the tablet shortages impacted her, her service swapped her back to injectables but reduced her dose significantly from what would have been the equivalent dose to her tablets, citing overdose risk as the reason. This is despite the fact that leaving Anna suddenly under-dosed would increase the odds she would resort to the illicit market after a long time away from it – increasing her overdose risk.
In this case, to stay well, Anna supplemented her dose with some leftover oral methadone so that she could get through the Christmas period with her family. Sadly, this has caused her to worry about whether the service would ever reinstate her earlier dosage or if they would punish her for ‘topping up’.
Unfortunately, Anna’s situation is not unique. As a result of medication shortages, Release has been contacted by a number of people – some of whom had been stable on their medication for years only to be thrown into a state of sudden uncertainty and put onto regimens they were unhappy with or even properly consulted about. In other cases, people have contacted us because their service simply would not get involved promptly to help resolve their medication shortage through the provision of an alternative script, leaving them sick and in distress.
The systems of medication manufacturing and distribution to pharmacies are not straightforward to understand or navigate. Pharmacies order medications via different wholesalers who have rules for ordering and distribution – such as not stocking or supplying medicines within a set number of months of their expiry date. Getting information from wholesalers on whether they still have stock of different medicines is often impossible for normal citizens trying to solve their own shortages. This is also true for advocates at Release, who are not privy to intel from wholesalers and have to work with allied professionals in the drugs sector to find solutions for people whose medication is unavailable.
For every person contacting us, and who we were able to support, how many didn’t have Release’s number, or an allied key worker, or a kind pharmacist fighting their corner? Even in cases such as Anna’s – where people have self-advocated but been offered subpar treatment plans as a result – how many are left more vulnerable after each supply disruption?
It’s not an answerable question. We don’t know how many people are prescribed various different forms of OST, as there’s no breakdown of prescription type in NDTMS and there’s no public entity keeping track for us to make FOI requests to. This means it’s hard to strategise much beyond the firefighting we do already.
Ultimately, we need a system overhaul which rejects the current allowance for OST patients to be treated as second class citizens, especially OST patients who do not fit the mould and require less common forms of OST medication to live well. Services should offer and protect medicine choice and not view shortages as an opportunity to permanently alter the treatment plan of a patient. We also need services and systems to become more responsive to patients, in an environment where disruptions are becoming more commonplace and the illicit market evermore dangerous.
Finally, for people who commission services, we ask: what mechanisms are you incorporating to make services accountable to service users? These mechanisms must suit people actively on OST in all their diversity (by which we mean diversity of medications, of class, of race and ability status, and of gender and sexuality) and not prioritise those people working towards abstinence alone.
Shayla Schlossenberg is head of drugs services at Release
Riley Johnson is drugs support advisor and NSP specialist at Release