By Rose Tedeschi
The government announced national supply issues affecting ADHD medications in Autumn 2023, and almost a year and a change of government later, the shortage continues.
Attention Deficit Hyperactivity Disorder (ADHD)
The National Institute of Mental Health defines ADHD as ‘a developmental disorder associated with an ongoing pattern of inattention, hyperactivity, and/or impulsivity’. The symptoms of ADHD can interfere significantly with an individual’s daily activities and relationships, and can include difficulty focusing on one thing, hyperactivity and restlessness, and impulsivity.
ADHD is a disorder that is believed to begin in childhood – the adults who are now being diagnosed haven’t suddenly developed it; rather, it went unnoticed in them until adulthood. Often this is because the person has learned to mask their symptoms, not always consciously, in order to ‘fit in’.
Treatment for ADHD encompasses therapy and other behavioural treatments, as well as medication. As with many mental health treatments, a combination of both is ideal, but due to the poor funding of the NHS, the waiting lists for therapy are so long that many people aren’t seen for years. Fueled by a society that puts productivity and profits over the health of workers, we now face a situation where more people are finding themselves needing help that isn’t coming and becoming dependent on medications to treat their symptoms. When unable to address their symptoms, patients are treated as an inconvenience, often facing stigma or even losing employment.
Shortage of medication
On 27th September a National Patient Security Alert (NatPSA) was issued announcing that the ADHD medications Methylphenidate, Lisdexamfetamine, Guanfacine and Atomoxetine, were affected by ‘supply issues’, leading to ‘significant disruptions’ to patients. ADHD UK, a charity ‘by people with ADHD for people with ADHD’, estimated that approximately 85% of people prescribed medication for the disorder have been affected by shortages since the NatPSA was issued.
The latest information from the NHS shows that the medications that continue to be affected are Methylphenidate and Atomoxetine. Methylphenidate is recommended by the NICE guidelines as the first line for young people aged 5 and over, with Atomoxetine and Guanfacine prescribed when patients are resistant to other medications. For adults, Methylphenidate is also prescribed along with Lisdexamfetamine as a first line treatment option, and again Atomoxetine is used only when patients cannot tolerate or are resistant to all other options.
Because Methylphenidate is the primary option for medicating ADHD, it is the most commonly used; therefore although there has been heavy emphasis on the fact that only two medications are still affected, this impacts on a huge number of people. And for those needing Atomoxetine, they have lost their last line of defence.
Severely delayed diagnoses
Awareness of neuro-diversity has risen vastly in the last few years, and with more people understanding the disorder, more people can recognise when to get help. When something gains attention and awareness, it is very common to see what appears to be an upsurge in cases, but these numbers actually reflect an upsurge in diagnoses – the same number of people are living with symptoms, but more are coming forward and receiving help.
In August 2023, the BBC reported that the number of adults receiving an NHS prescription for ADHD had ‘increased seven-fold over the last 10 years’. The ADHD foundation said it has seen a 400% rise in adults going to them compared to before the Covid-19 pandemic. This is very likely thanks to an increased awareness and understanding of the disorder, which affects around 4% of the UK population.
Like with many neuro-diversities, ADHD has gone unnoticed in many people, leading to a number of adults now recognising symptoms in themselves and seeking a diagnosis and/or help in managing their symptoms. For a long time, people with ADHD were seen as ‘hyperactive’, as naughty children who won’t sit still or as lazy adults who lack motivation. It was largely believed that it only affected school-age children, and it was presumed to be something that affected males. To this day, ADHD is less likely to be diagnosed in females, diagnosed later in life if at all, and are also less likely to be prescribed ADHD medication.
It is clear that our understanding of neurodiverse conditions is significantly lacking, and the delayed diagnoses of what is one of the most common developmental disorders shows how our system is failing huge sections of society. There are some claiming that the rise in cases of ADHD is purely attention-seekers trying to jump on a popular trend, a view that directly contradicts all peer-reviewed research of the subject. Adam Joiner, medical director at Psychiatry UK, puts it well, observing that ‘there’s decades of unmet demand, which everyone is trying to meet now’.
Causes of the crisis
The number of prescriptions written for ADHD medication has increased 3 times faster than expected since 2021, driven largely by wealthier adults seeking help for the disorder. According to an analysis from February by the Financial Times, the number of prescriptions for ADHD ‘grew at twice the rate for the least deprived 20% of the population as for the most deprived 20%’. This is in spite of the fact that, according to health experts, patients on lower incomes are more likely to have ADHD, but it is those patients who can afford private health care that get to skip the queue and obtain a diagnosis and treatment much sooner.
Thanks to the steady defunding of the NHS that we have seen in recent years, many patients are being seen by private clinics with NHS contracts – but as spokesperson for the Royal College of Psychiatrists Ulric Müller-Sedgwick says, ‘a lot of the money used to fund private assessments could have been used to develop existing NHS clinics at a greater pace’. Instead, it went into the pockets of the shareholders of private subcontractors.
Herein lies the problem when it comes to funding in state projects. Across all sectors of society, it is proven time and time again that investing in infrastructure, training, working standards and up-to-date equipment saves money in the long term, yet time and time again this data is ignored in favour of the short term cheap trick that will require regular and costly reinvestment.
The previous government didn’t fall into this trap; they designed it – presumably with the backing of certain shareholders of private subcontractors. While idealists can hope that a Labour government will improve the system perhaps by going back to a strategy that worked in the past, the rest of us are painfully aware of Labour’s inability or even lack of will to make real and sustainable improvements. We need health and social care that is run by the workers and users, free at the point of delivery and provided to all, not a two-tier system that reserves the best treatment to those who can pay more.
Corporate greed
The other cause of the drug drought, along with the increased demand globally for this medication, is ‘manufacturing issues’ in the supply chain. Pharmaceutical companies continue to provide end-dates to the shortage that are not met and appear not to have the capacity to stably supply the growing need for ADHD medication. But with the enormous profits that we see from these companies, it begs the question of why things as essential as the ability to distribute the product have been allowed to get into such a state.
Consilient Health, based in the UK, is one company who manufacture oral Atomoxetine, a company who, despite what their name would suggest, are “insightful and innovative commercialisation experts” who proudly state that they help companies to “increase revenue while minimising risk”. They are responsible for distributing the medicine, and see an annual turnover of around £55 million. The chairman and majority shareholder, Shane Reihill, is a former investment banker, founded two private equity/venture capital businesses, and is the former joint CEO of Tedcastle Holdings which distributes oil and petroleum products. Consilient Health is also responsible for supplying HRT to the NHS, which has also seen increasing shortages in the last 3 years.
Eli Lilly is a US based pharmaceutical company who also supply oral Atomoxetine, and their website at least suggests that they exist to help patients, even if their track-record disagrees. The company has been found to have twice illegally marketed medications, have been sued for sex discrimination, have campaigned against regulations to keep medication prices down and have hiked the prices of insulin. Their annual revenue is $34.12 billion. Eli Lilly formerly had multiple contracts with the NHS, but in 2023 pulled out of the voluntary UK pricing agreement claiming “punitive revenue clawbacks” meaning that the NHS will lose their contracts if they cannot keep up with the rising costs – which is incredibly likely given the financial hardships facing the health service.
Zentiva Pharma UK Ltd is registered in London, which estimates its turnover at £111.9 million, is one of the suppliers of Methylphenidate to the UK. Zentiva is a subsidiary of a subsidiary, and is ultimately owned by Advent International, a company based on buying out other companies, which including Zentiva has a portfolio worth $94 billion. It was founded by business man Peter Brooke, hailed as the “founding father of venture capital”. Zentiva also has contracts with the NHS to various other medications, and are also experiencing issues in the supply of pancreatic enzyme replacement therapy (PERT), a treatment for pancreatic cancer sufferers, as well as needing to recall certain medications including their brand of co-codamol for inconsistencies which led to some batches having too high a level of codeine, an addictive opiate.
There are just three of the suppliers of the affected ADHD medications, and the same patterns occur across them all. They all report incredible profits, owned and controlled by wealthy investors motivated purely by profit; their attitude to the health of their customers is demonstrated in the reckless way medications are marketed; and their neglect to the people dependant on the medication they claim to be able to provide is shown in their failure to invest in something as crucial as distribution.
Many of these companies have only seen an increase in profits throughout the duration of the ADHD medication shortage, and here we see why the crisis has been allowed to deteriorate to this extent. Without seeing a hit in the profits, the companies have no reason to change their services. The fact that Eli Lilly, for example, have pulled out of the voluntary pricing agreement proves that they value not only profits, but ever-increasing profits. The profit motive means big pharma doesn’t invest enough in the production of anything that is not profitable enough, no matter the need or the human cost.
Advice for those affected by the shortage
One way the government has tried to mitigate the shortage for those prescribed these medications is to halt any prescriptions to anyone waiting to start treatment. This left some patients waiting for over 10 months to begin to get the help that they need. These restrictions have been lifted as of September of this year, but the backlog, already sky-high thanks to the years of delayed diagnoses, could take 8 years to clear.
Patients already prescribed ADHD drugs are not in a much better position. The NHS is advising those on methylphenidate and lisdexamfetamine to take breaks over weekends and in school holidays if possible, or even to stop until supplies are stable again. This is far from ideal for users of the medication, who rely on the drugs to maintain a decent quality of life, and for working adults, there is rarely going to be an ideal time to have to go without.
A small number of people may still be able to find stocks of their medication if they ring around local pharmacies. The NHS website also recommends trying to contact wholesalers to see if they have any available. However, those able to get medication will likely receive less than usual in order to ration the supply and make them available to more people. Many have resorted to rationing what they can get with fellow patients.
The NHS suggests patients look for non-drug related treatments. According to the National Institute of Mental Health, research suggests that therapy may not be effective in treating the core symptoms of ADHD (although CBT has been shown to help to manage symptoms), and in cases where it may be helpful, it is unlikely to be available. This leaves patients with no help save the NHS-approved ‘coping strategies’: increased physical activity, a good sleep and a balanced diet. Presumably if these strategies actually helped, there wouldn’t be such a demand for pharmaceutical treatments.
Consequences for patients
Many ADHD medications have withdrawal symptoms which can include tiredness, poor functioning, and a worsening of ADHD symptoms. The NHS advises avoiding driving, operating heavy machinery and not making any important decisions during this time. These symptoms have a huge impact on a person’s quality of life and ability to work, and although most will last less than a week, the intermittent supply could easily lead to patients having to go through this multiple times. The published guidance warns that products ‘may go out of stock at short notice’. Of course, even when the withdrawal symptoms fade, the person still has to manage the symptoms that they were on the medication for in the first place, and to do so in a society that condemns anyone that does not conform to long-outdated ‘norms’.
ADHD UK has raised concerns that jobs could be threatened without patients being properly treated. Amongst other symptoms that workplaces might consider disruptive to productivity, many people with the disorder have difficulty focusing on a single task. Others have faced difficulties in the workplace and have been made to feel ‘ashamed’ for asking for reasonable adjustments to cope without medication.
The charity’s crisis report, updated in January 2024, found that 87% agreed that their work had been negatively impacted due to the ADHD medication crisis, and 43% were concerned about losing their job due to the crisis. Scaling this up to the estimated 1.9 million adults in the UK living with ADHD and hundreds could be out of work without their prescriptions. Henry Shelford, chief executive of ADHD UK, likened the sudden removal of medication to patients to ‘taking a wheelchair away from a disabled person that needs it’.
In patients who are under 18, going without medication can affect schooling, exam performance and mental health. ‘It can cause anxiety, it can cause low self-esteem, and more flashpoints with family, friends and schools, colleagues’ according to consultant paediatrician Dr Matthew McConkey. Young drivers with ADHD are at an increased risk of accidents without medication. There is a risk of substantial mood disorder. Even six months of this level of disruption would have a huge impact on a person’s development, and some patients have already had to cope with twice this length of time without adequate treatment.
Conclusions
As of July 2024, the situation has seen some improvement, although there are still shortages across a number of medication types and strengths. There is still no real estimate on how long the shortage will last, and the NHS cautions that ‘although some products have come back into stock recently, supply chains remain fragile’. The fact that such a shortage can exist demonstrates the continued oversight of mental health conditions and neurodiversity.
Healthcare should be available to everyone and until we start addressing vulnerable people and their needs, and expanding funding for these areas, many more people will face difficulties accessing the help they need. We need to end copyrights over pharmaceuticals, to prevent the hyper-inflated prices, and we need to take ownership of these companies into the hands of the workers. Without social control over big pharma, we will never resolve this crisis, and vast areas of health care and indeed the population will continue to be ignored because they aren’t profitable.
