Two weeks ago, I ran out of my ADHD medication. I headed to my local pharmacy, prescription in hand, and was told that they, too, were out of my ADHD medication. And they are not the only ones: they are all exhausted. None are found in the entire country.
There have been supply problems with my usual methylphenidate prescription since October 2023, when the NHS had to issue an alert to several health trusts, warning them of supply problems. Since then, my pharmacy team has been brilliant at trying to get me different brands of methylphenidate: Ritalin, Concerta, Delmosart, Equasym, Medikinet or just generic methylphenidate. But now it’s all gone. The pharmaceutical cupboard is empty and no one knows when it will be available again.
In March 2024, the Government attributed the ADHD drug shortage to “capacity constraints at key manufacturing sites.” However, a report on drug shortages in the United Kingdom, published by the Pharmaceutical magazinecited “Brexit, the war between Ukraine and Russia, the Covid-19 pandemic, rising energy costs and inflation, logistical problems and the availability of raw materials” as key reasons.
ADHD medications aren’t the only ones that are running out, far from it. Just this month, the Department of Health and Social Care issued new medicines supply notifications for certain asthma medicines (Flixotide), insulin medications (Humalog), antibiotics (erythromycin and trimoxazole), as well as medications used to treat schizophrenia (quetiapine), genital warts (podophyllotoxin), and alcohol withdrawal (clomethiazole).
Other vital medications such as hormone replacement therapy, Ozempic, as well as those used to treat Parkinson’s disease and epilepsy, have been in dangerously short supply for months. In most cases, it is specific brands that are no longer available, so hopefully other brands will be available. Although, as in the case of ADHD medications, we are now faced with the reality that certain medications are completely running out.
Is all this due to increased demand? I find it very difficult to believe that the reason we are running out of genital wart cream is because of sudden supply pressures. According to a survey of 56 hospital pharmacists by the Pharmaceutical magazine, 85 percent of pharmacists believe that geopolitical factors such as Brexit and the war in Ukraine are the reason why so many medications have run out; 59 percent cited procurement prices as a reason and 24 percent said it was related to Covid-19.
Perhaps this is a perfect storm of terrible events. But to be completely honest, at this point I no longer wonder why there are drug shortages. I just want this to be fixed.
I’ve been following the drug stock crisis since it started and I’ve just been praying that it doesn’t affect me. In many ways, I have been very lucky. Until it was all gone, my pharmacy did its best to find alternative brands I could take. I know there are other people who haven’t been able to access their medications for months. I’m lucky to have been able to access it for so long, which, admittedly, is a surprisingly low bar for the world’s sixth-largest economy.
Being in that pharmacy and being told they couldn’t get my medication was terrifying. I didn’t know what to do and no one could tell me either. When would it be available again? (No one knew). How will I know when it will be available again? (You will not do it). Do I have to keep calling the pharmacy to ask? (Yes.) How often do I do that? (As often as you want.) The only solid advice they could give me was to call other pharmacies in the area to ask if they had anything left in stock.
So, I sat in my car and did something I hadn’t done since I was 20: I called number after number to ask strangers if they had anything. Nobody did it and that was it. For the first time in eight years, I would be completely off medication and there was absolutely no support available. Just a “sorry, there’s nothing we can do.”
There is no alternative brand of methylphenidate that they can offer me. Everything is gone. I have asked to be switched to a medication containing lisdexamfetamine, but this is also very scarce and it is unlikely that they will prescribe it to me.
Even if it were, changing medication is a very slow process as it can only be approved by my NHS ADHD clinic, who will (quite rightly) want to monitor any such change in treatment. It could be months, even years, before an appointment is available. There are currently 290 people waiting for an appointment to start medication at my ADHD clinic before me. They are just starting to see people joining that list in 2022. All they can do is wait.
ADHD medications are controlled stimulants. There is methylphenidate which is used in Ritalin, Concerta and other formulations, and lisdexamfetamine which is used in Adderall, Vyvanse and other formulations. It may seem completely counterintuitive to give someone with ADHD amphetamine-based medications, but it works by increasing neurotransmitter levels in the brain. ADHD is thought to be caused by low levels of a neurotransmitter called norepinephrine. Scientists have also observed that a brain with ADHD does not have the same levels of dopamine as a neurotypical brain. These medications, when used correctly, do not make someone with ADHD high, but rather calm them down. That’s why it’s so silly for someone without ADHD to take these medications thinking they will improve their concentration. It will do precisely the opposite.
These medications are strictly controlled and there are very clear guidelines for anyone who wants to stop taking them. The NHS website offers the following advice: “Only stop taking methylphenidate if your doctor tells you to. “If you suddenly stop taking it, you may have withdrawal symptoms, such as depression.” Patients are advised to reduce the dose slowly to “avoid additional side effects.”
No doctor has told me to stop taking my medications and I haven’t had a chance to taper them off slowly. Due to supply problems, I have had to stop doing it suddenly without prior notice, without help or advice to back me up. It’s dangerous and it’s been really horrible. For the first few days I felt very tearful and anxious. I cried a lot and didn’t really know what to do with myself. My head hurt all the time and my sleep was punctuated by vivid dreams that woke me up every few hours. But it wasn’t the immediate withdrawal symptoms that scared me: They disappeared within a week. What has really bothered me is the sudden attack of all my ADHD symptoms.
When I started taking medication, I was surprised at how quiet my brain became. The constant mental chatter faded to a manageable hum, and for the first time, I was able to truly focus on tasks without being distracted by a brain playing a hundred different TV channels at the same time. It took a little getting used to, but it was a revelation. My memory and productivity improved dramatically because I was actually paying attention to what was happening around me. I was present and in the moment, not lost in the confusion of my own thoughts.
Before taking the medication, it was like I was looking at the world through a dirty window. I was never able to see the big picture because of all the mental detritus that got in my way. The medicine cleared the glass and I was able to focus on the right things. Now I’m back where I was eight years ago and I’m scared.
I make mistakes all the time, forgetting appointments and confusing important dates. Work tasks are taking much longer than usual. I can usually write a column in three hours; This one has taken five (and counting). I had dinner with friends last week and had to leave early because I found the restaurant atmosphere too stimulating and I couldn’t follow the conversation. I feel so confused and distracted. It’s like the confusion of a hangover or that feeling of disconnection that accompanies lack of sleep. I just can’t concentrate.
The impact of this goes far beyond feeling a little anxious and disconnected. ADHD medications are life-saving medications. A study published in the Journal of the American Medical Association in March found that “the two-year mortality rate was lower among those who started ADHD medication (17.3 per 10,000 people) compared to those who did not start medication (31.8 per 10,000).” In simple terms, those with ADHD who took medication lived, on average, two years longer than those who did not. This was attributed to “mortality from unnatural causes,” that is, homicides, suicides, accidents, alcohol poisoning, and drug overdoses.
I, and many millions of others, have no idea when we will be able to again access the medicines we urgently need. I’ve talked about ADHD here because that’s my experience, but there are many people who are suffering right now because the medications they need to stay alive simply aren’t available. People with diseases such as asthma, epilepsy, Parkinson’s disease, diabetes and schizophrenia are being cruelly affected.
I’m still waiting to acclimate to my new normal, just like I had to do when I started taking medication, but why the hell should I have to? Why should anyone go without the medications they need?
This goes beyond a scandal: people’s lives are in danger.
