Jonathan Medland’s voice crackles with anger and emotion when he talks about his beloved son Jon, who tragically took his own life aged just 22.
‘He was the most exuberant, engaging, funny and amazing young man you could ever wish to meet — nobody had a bad word to say about him — he was really going places,’ says Jonathan, 66, a retired driving instructor from Barnstaple in Devon. ‘But that drug did something terrible to his brain.’
The drug he’s referring to is isotretinoin — brand name Roaccutane — a pill first licensed in the UK for the treatment of severe acne in 1983 and since taken by hundreds of thousands of patients.
It was prescribed to medical student Jon for spots on his back in late 2003. A few weeks later he was found dead in his student accommodation at Manchester University. To this day, 20 years on, his bereaved father is utterly convinced the drug was to blame.
Isotretinoin is widely used — around 40,000 prescriptions are given out on the NHS every year, primarily by dermatologists. But, while it can be highly effective, its reputation has been tarnished by suggestions that it might also have driven nearly 100 — possibly many more — young men and women in the UK to end their own lives.
Jon Medland, a 22 year old medical student whose family blame his suicide on the drug Roaccutane he was taking for acne
Many of those who died were teenagers and — again, like Jon — had no previous history of mental health problems.
Now bereaved parents and campaigners are up in arms over what they see as the failure of NHS drug authorities to take sufficient action to reduce the risk of more suicides in young adults after being on the drug.
In 2019, the Medicines and Healthcare products Regulatory Authority (MHRA), which vets the safety and use of all medicines in the UK, announced a major review of the evidence on isotretinoin’s potential to cause harm.
This was in response to a steady rise in adverse reactions reported to the Yellow Card scheme — the government system for doctors and patients to record side- effects suspected to be linked to medicines.
Since isotretinoin was given the green light in the UK 40 years ago, it has triggered nearly 8,000 Yellow-Card reports, ranging from severe birth defects and erectile dysfunction to loss of vision and damage to the nervous system.
But almost one in four complaints is due to severe psychiatric reactions including anxiety, depression, personality changes and suicidal thoughts.
To date there have been 88 cases recorded on the Yellow-Card system where isotretinoin is thought to have led to young people taking their own lives, but campaigners believe the real number is much higher, as it’s widely acknowledged adverse drug reactions generally are under-reported.
The Yellow-Card data shows psychiatric complications relating to the acne pill are slightly more common in boys than girls, with an average age of just 15.
For their review, the MHRA asked the Commission on Human Medicines — an advisory body made up of scientists — to examine the evidence on the drug’s safety and to consult patients who had taken the drug, parents who had lost children to suicide, as well as a wide range of medical experts.
Campaigners had hoped the long-awaited report would culminate in either a total ban on isotretinoin, or at least in its prescription to under-18s (considered especially susceptible as they may be less likely to appreciate fully the risks).
They had also called for all patients to be required to sign a detailed consent form explicitly outlining potential psychiatric and sexual dangers, before beginning treatment, with a ‘cooling off’ period of two weeks for them to consider the risks properly.
This would be similar to the U.S., where, since 2006, all patients taking isotretinoin must sign a consent form and register with a central database run by the Food and Drug Administration, called iPledge. If the patient is under 18, their parent also has to sign a consent form.
Annabel Wright took her own life in May 2019, something the family is convinced happened because of the side-effects of the isotretinoin that she had been on for six months
This includes both parties signing a section which explicitly states: ‘I understand . . . some people on isotretinoin have ended their own lives and did not appear depressed.’
U.S. doctors must also clearly specify to each patient the potential hazards from taking isotretinoin. Patients, meanwhile, must submit monthly feedback on unwanted side-effects, in order to get their repeat prescriptions.
In the UK, the only current requirement is that female patients must sign an acknowledgement of risk form, detailing the dangers of taking the drug if pregnant.
But in the end, the MHRA decision — published in April — stopped short of consent forms, let alone even a partial ban.
Instead it ruled that doctors could continue giving out isotretinoin as it clearly benefits young adults whose lives are blighted by severe acne.
The MHRA’s chief safety officer, Alison Cave, said no medicine was completely risk-free, adding that the review concluded that ‘on balance, the benefits of isotretinoin for severe acne continue to outweigh the risks.
‘Uncontrolled acne can have a significant impact on a patient’s mental wellbeing and can also lead to permanent scarring.’
The MHRA added that available evidence did not demonstrate that isotretinoin definitely causes psychiatric or sexual side-effects.
But the report did call for new measures, amid claims that some doctors hand it out too readily. For instance, when the new measures are introduced (‘in the coming months’), under-18s will only get the drug if two medical professionals agree it’s needed.
Harmful for some, a lifesaver for others
The written submissions to the recent official review on the safety of isotretinoin contained some powerful — and mixed — testimonies from both patients and parents:
- ‘They sold the benefits to me like a drug dealer on the street and didn’t think to mention the psychiatric or sexual side-effects. These were so bad that I didn’t even know what was happening until friends and family started asking what on earth was going on.’
- ‘It’s given me my life back. I don’t think I’d be here now if it wasn’t for isotretinoin — that’s the difference it’s made to me. I will forever be grateful it was available to me.’
- ‘Seeing people with mild forms of acne given this medication makes me sick. It’s not worth the risk — it should only be given to people with severe scar-forming acne.’
- ‘Nothing else is strong enough to work — if it’s removed then there needs to be something just as effective to replace it.’
- ‘He blames us, his parents, for taking the risks involved with this drug. We were the adults, he was the child. We feel dreadful — guilty, depressed, stupid — my poor son is impotent as a result of a terrible decision made by his parents.’
- ‘We had no idea how ill he was becoming; he had a severe psychotic reaction and hanged himself in his lodgings… while his friends were in the next room.’
- ‘Acne caused me years of misery — the scars for life are traumatic. So I’m happy my daughter was able to get the treatment.’
- ‘Over a period of about three months, I went from being a healthy, happy teenager to completely withdrawn from the world and suicidal. After attempting to end my life, I was admitted to a psychiatric hospital. I lost three years of my life.’
Currently, it only needs one dermatologist or a nurse prescriber (working under the supervision of a consultant dermatologist) to issue a prescription.
Secondly, under-18s will only be put on isotretinoin if all other standard treatments — including several types of antibiotics — have not worked, rather than leapfrog straight to it, as currently sometimes happens. The report also said that patients and their families must receive earlier and better information about safety issues and there should be ‘constant monitoring’ by medics of patients’ psychiatric and sexual health ‘so any problems can be spotted early’.
But the MHRA has not yet detailed what form ‘better’ information or ‘constant monitoring’ should take.
Isotretinoin works by shrinking the sebaceous glands, reducing their production of sebum — the oily substance made naturally by skin cells to stop our skin from drying out. (Excess sebum can block pores, leading to spots.)
Studies show that it can be highly effective at clearing problem skin. Powerful personal testimonies submitted to the MHRA as part of the review suggest it can be life-changing.
‘I don’t think I would be here today if it wasn’t for isotretinoin,’ one patient wrote. ‘It’s given me my life back and I will forever be grateful that this treatment was available to me.’
But others claimed doctors had dished isotretinoin out to them without proper warnings.
One angry parent wrote: ‘My son and I had no idea isotretinoin could trigger a psychotic reaction — it was such a shock when it did.’
Jon Medland was a promising medical student when a dermatologist prescribed the medication. But he quit after just three weeks when he started to have suicidal thoughts.
Despite this, his mental health continued to worsen and he was found dead in his student quarters a few weeks later.
A coroner’s report described how he had gone from being a ‘bubbly, outgoing young man’ to one whose mental health was catastrophically broken in less than a month.
‘Doctors tried him on an antibiotic first but when he asked about isotretinoin — which he had heard about from other medical students — they switched him straight to that,’ says his father Jonathan.
‘They said you might feel a bit down for a while but it’ll be OK in the end. But it soon became obvious he was very unwell. He went from zero mental health problems to full-blown psychosis in a matter of weeks.
‘Jon should never have been on isotretinoin as he did not even have severe acne and I do not believe these new recommendations from the MHRA would have prevented his suicide.
‘I feel incredibly angry and totally let down — more children are going to die as a result of this. You cannot predict who will react badly so it’s like playing Russian roulette with children’s lives.’
Helen Wright, 52, from Ripon, North Yorkshire, agrees. She lost her 15-year-old daughter Annabel in May 2019 when she took her own life out of the blue, something the family is convinced happened because of the side-effects of the isotretinoin that she had been on for six months.
‘I’m so angry with the MHRA,’ she told Good Health. ‘We wanted a complete ban on the drug, or at the very least in those under 18. They’re basically saying children like Annabel are collateral damage — their lives are a price worth paying.
‘This has been nothing more than a tick-box exercise to show they’ve reviewed it — but it would not have prevented Annabel’s suicide and it won’t prevent others either.’
Helen fears, for example, that the two-doctor ruling will have no impact as the second opinion is likely to be a doctor from the same hospital department, unlikely to challenge a colleague’s judgment. Professor Tony Chu, a recently retired consultant dermatologist, acknowledged as one of the UK’s leading experts on treating acne, says an outright ban on isotretinoin is not the answer, as the drug can transform young lives blighted by severe acne. But he says the MHRA recommendations fall short of what’s needed to save lives.
‘I’m very disappointed at the outcome,’ says Professor Chu, who gave evidence to the Commission on Human Medicines.
The Yellow-Card data shows psychiatric complications relating to the acne pill are slightly more common in boys than girls, with an average age of just 15 (stock image)
‘In my submission, I said all patients should have to sign a consent form that not only explains all the possible side-effects but also states in big, bold capital letters — ‘this drug is unpredictable and could make you commit suicide, or leave you totally unable to enjoy sex again’.
‘It has to be really clear, in words of one or two syllables so patients can make up their own minds.’
Campaigners are also concerned that skin specialists may not have the skills to assess patients’ mental wellbeing properly before initiating isotretinoin — or know how to monitor them properly.
Helen says: ‘Annabel was seen by a dermatologist for a routine follow-up appointment on the day she died. He asked her how her mood was and she said fine — because it was.
‘Less than five hours later she was dead — absolutely nobody saw it coming.’
One of the failings in the current system, some grieving parents claim, is that patients and family members are told to look for signs of depression or low mood.
Consultant Dermatologist Professor Tony Chu said: ‘A consent form should state in big, bold capital letters: this drug is unpredictable and could make you suicidal’
Typically, these include tearfulness and being very withdrawn. Yet anecdotal evidence suggests this is rarely the pattern in isotretinoin-related suicide.
‘Annabel was in a great mood that night because we had just booked to go on holiday and she’d been talking on her phone to friends all night,’ says Helen.
‘She even had a chat with her dad Simon about the next day’s Spanish GCSE exam. Twenty minutes later she was gone. She was just 15. Nobody should be subjected to such a dangerous drug for a non-life-threatening condition like acne.’
Professor Chu adds that many UK dermatologists simply do not appreciate just how potentially risky isotretinoin may be. ‘I’ll admit that when the first suspected drug-related suicide happened in the U.S. back in the late 1980s, I didn’t believe isotretinoin was to blame.
‘I thought people with acne often get very depressed and that was the issue here. But it’s now obvious to me that it can cause a psychotic episode which happens completely out of the blue — no fancy psychiatric assessment will detect if someone is at risk.
‘Yet I bet 90 per cent of dermatologists still blame the mental health problems in these cases on the acne not the drug.
‘I’ve seen dozens of patients who’ve been told by other dermatologists that the only side-effects are dry lips and skin.’ Some doctors give the drug out too freely, he says. ‘Clinical guidelines from the National Institute for Health and Care Excellence and the British Association of Dermatologists state it should only be used for severe acne that’s rated five or above on the Leeds grading system (a scoring system of one to ten: above five means there’s a risk of scarring).
‘But I’ve seen patients put on isotretinoin when their acne was only grade two to three — which is moderate, not severe.’
Precisely how the drug might cause a sudden psychological implosion remains unclear. One theory is that it interferes with the formation of new, healthy brain cells. Another is that it disrupts the activity of certain brain chemicals that regulate mood and mental stability.
David Healy, an expert in adverse drug reactions and former professor of psychiatry at Bangor University, Wales, has monitored the safety of isotretinoin for years.
He told Good Health: ‘Dermatologists have become very blasé about prescribing it — some will give it to you if you have a pimple or two. Yet it’s very clear that this drug, although very useful in the treatment of severe acne, can cause sexual dysfunction as well as suicide in young people with no history of mental health issues.’
Professor Tony Chu, a recently retired consultant dermatologist, acknowledged as one of the UK’s leading experts on treating acne, says an outright ban on isotretinoin is not the answer, as the drug can transform young lives blighted by severe acne (stock image)
He says that suicidal thoughts often come on very quickly — and in the early phase of treatment. ‘You don’t see a slow build-up where someone is obviously depressed.’
He adds: ‘Patients are rarely told that, yet it could save lives if they recognise what’s happening.’
The British Association of Dermatologists (BAD) said many skin specialists already give patients ‘all the information they need’ and effectively monitor them during treatment.
A spokesperson told Good Health: ‘The BAD is committed to ensuring patients with severe acne have access to the best possible treatments in the safest way.’
But Labour MP Debbie Abrahams, who represents Oldham East and Saddleworth, has called for measures to ensure parents of teens are always told when their child is being given such a powerful medicine. It follows the tragic death in August 2021 of her 20-year-old nephew Jack Abrahams, who took his own life four years after being prescribed isotretinoin without his mother’s knowledge — she only learned he had been on the tablets after his death.
Jack took the medication for just six months — his family believes his tragic tale shows how the drug can continue to devastate mental health long after someone has stopped taking it.
Professor Chu says it’s not clear why, in some cases, the drug appears to trigger a psychiatric meltdown months or even years after being stopped. But he says it may be linked to genetics, or the body’s inability to break down isotretinoin’s toxic contents completely.
‘Jack was given the drug by a nurse prescriber, rather than a consultant dermatologist,’ Ms Abrahams told Good Health. ‘The nurse used a form which asked if his parents knew he was there — he ticked yes, even though his mother didn’t. At the coroner’s inquest, we called for a change to ensure that when it’s someone under 18, the parents or carers are told.’
The Manchester North coroner ruled there was insufficient evidence to show a ‘causative link’ between isotretinoin and Jack’s death, but she was sufficiently concerned that in February this year she issued a Regulation 28 report to Health Secretary Steve Barclay, legally requiring him to explain what action will be taken to reduce future suicide risks associated with the drug. The Department of Health and Social Care told Good Health Mr Barclay responded on June 27.
‘Jack was gentle, bright and kind,’ says Debbie Abrahams. ‘Doctors are just too casual about prescribing this drug.’
Robert Reeves, 56, a building services consultant from Cornwall, lost his 21-year-old son Luke to suicide in 2016 after he was prescribed isotretinoin.
He said: ‘My question to the MHRA is this — what number of deaths would there need to be before you decide the risks outweigh the benefits?’
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