Roaccutane in the Spotlight

Roaccutane1

 

JonMedlandTen years ago, 22-year-old Jon Medland (right) was in the final year of a medical degree course at Manchester University. He was known for his outgoing personality and his great intellect, and was looking forward to a successful career. The one small problem in Jon’s life was that he had mild acne. His GP sent him to a dermatologist, who prescribed isotretinoin, a strong drug which was initially marketed for chemotherapy, but was later prescribed for acne, under its brand name Roaccutane. In the space of just 3 weeks, Jon became withdrawn and was having suicidal thoughts.

Jon decided to stop taking the medication, and returned to his GP, who made the extraordinary decision to prescribe Citalopram. The next day, Jon was found hanged in his room.

Daily Mail -FEMAILSince then, Jon’s father Jonathan (left) has worked tirelessly to raise awareness of the dangers of the drug which has been withdrawn from the USA and several other countries, but which is still available in the UK and Ireland. Yesterday afternoon, a debate in Parliament was instigated by Jonathan’s MP, Sir Nick Harvey, who first called for an enquiry into the drug as long ago as 2005.

Unfortunately, in the intervening years since Jon’s death, there have been many others who have taken their lives after taking Roaccutane. Here are just some of them:

DavidRobertsRoIn 2004, 21-year-old student David Roberts (right) had been taking Roaccutane for two months when he hanged himself near his Liverpool home. At David’s inquest, his father Fred said: “David was the most happy-go-lucky, carefree lad you could ever hope to meet. He had plenty of friends, he enjoyed going out, he had a happy family life. His acne wasn’t severe at all. He had a few spots and, like any young person, he wanted to get rid of them … The change in him was so sudden. There’s no other reason for it than the effect of this drug.”

A year later, Jason Spiller, just 16, hanged himself in the barn on his family’s farm after less than 3 weeks on Roaccutane. The prescribing dermatologist admitted that Jason had not been depressed previously.

AngelaLeeWhen 28-year-old Angela Lee (left) stepped in front of a train at Seven Kings Station in East London in 2008, she was said to have been the 30th person taking Roaccutane in the UK to have taken their life since it was first licensed. The Medicines and Healthcare Products Regulatory Agency (MHRA) had also recorded another 22 suicide attempts by this time.

In her suicide note, Angela spoke about how Roaccutane had aged her body, how she would never get better and how there was no way out.

MelissaMartinHughesIn 2010 Melissa Martin-Hughes (right) was beginning the run-up to A-levels at her school in Cheltenham, and was predicted to gain A-grades, when she was found hanged in a local park. Melissa had planned to spend a gap year working at a school in Chile prior to studying at York University.
She had already made a suicide attempt the previous year while taking Roaccutane for acne. After that, Melissa was put under the care of mental health services, but was ‘let down’ by failures from those supposed to look after her, the inquest was told. She had been seen only twice by a ‘crisis team’ assigned to her case before being discharged.

JesseJonesTalented musician Jesse Jones (left) had graduated from university, and was about to begin a job at Elstree Studios when he went missing after a night out in his home town of Swanage.

Police then found a message on Jesse’s computer which began: “Dear Mum and Dad, Roaccutane seems to have changed the way my mind and body works in a big way. I can barely bring myself to type its name because I hate it so much.”

Eloquently cataloguing the physical and mental symptoms he suffered, Jesse’s despair was highlighted when he revealed: “Anything to do with the opposite sex isn’t psychologically appealing. I used to have to try and stop myself from thinking about girls all of the time; now, I could hardly care less.”

5 days after he had been reported missing, Jesse’s body was found at the foot of a cliff. Jesse’s parents were unaware that he had been taking Roaccutane.

RobbieHale16-year-old Robbie Hale (right), according to his mother Lorraine, had been “super-confident, out-going, popular, good academically, good sportingly, with lots of friends” until he was prescribed a generic version of Roaccutane in April 2010. After the medication, he had anger issues and would punch holes in doors at their home and break furniture when having arguments with his sister. Lorraine said: ”I went to the GP and it was mentioned to him, I said he was having anger issues. The GP said it was hormonal and dismissed it.”

In January 2011, Robbie hanged himself in the garage of his home.

JackBowlbyAnother 16-year-old student, Jack Bowlby (left), known as a talented horseman, first started taking Roaccutane in December 2011 and had his dosage increased from 40 to 60mg a day a month later.

Jack was a boarder at the prestigious Cheltenham College, where days later he complained to school matron Tracey Hopson that he had been having “very dark thoughts”. They decided to reduce the dose, and Jack continued his studies.

When Jack returned in September he said he had given up the drug, but just four weeks later he asked for Roaccutane again. The day after taking his first tablet, Jack was found hanged in his room.

JamesSillcockIn November 2012, the BBC showed the investigative documentary ‘Dying for a Clear Skin’ which featured many of those mentioned above. In East Kent, 26-year-old James Sillcock (right) watched the programme with his parents. He had been prescribed Roaccutane at 16 but stopped 18 months later when he began suffering anxiety, fatigue and blurred vision.

But his family say he never got the drug ‘out of his system’ and was plagued by mental health problems for the next eight years. Days after the programme, James suffocated himself in his bedroom.

In a heartbreaking 20-page suicide note, Jack wrote: ‘”I used to love my life. There was nothing back then I would have changed. It really was perfect, and I was so lucky, with what I had.

“I could never have ever dreamt that taking Roaccutane, in the summer of 2002, ten years ago, could have brought the hell it has given me, changing my world completely, and leaving it in tatters.

“I haven’t been the same person since. I live every day in misery, helplessness, despair and regret.

‘”How my life would have been, had I not taken Roaccutane, I will never know now. All I ever think about is ‘what if’. What if I had never taken the drug?”

The talented footballer was said to be a “normal, healthy” 16-year-old when he was prescribed Roaccutane by a specialist, but while the medication got rid of his spots, it also took a shocking toll on his physical and mental health. James became anxious, tired and even struggled to see properly. James’s father said: “Unfortunately, once he’d taken it, he couldn’t get it out of his body. He started becoming withdrawn, stopped seeing friends and worked on his own.

NickHarveyOpening yesterday’s debate in Westminster Hall, Sir Nick Harvey (left) said about Roaccutane: “In the UK alone, it has been implicated in reports of 878 psychiatric disorders, including 44 suspected suicides.” He pointed out that: “It is worth noting that the information in the drug’s packaging includes explicit warnings about the possible psychological side effects, including incidences of suicide.”

Sir Nick called for: “A thorough re-examination of the evidence and an investigation into the use of Roaccutane, for stricter guidelines to medical professionals on prescribing the drug and for the Department of Health and the Medicines and Healthcare products Regulatory Agency to show greater will in warning of the risks.”

He finished his speech by saying: “In the absence of a consensus that a link exists, the burden of proof should fall upon the manufacturers and drug agencies to prove that there is no link, given the scale of the anecdotal evidence and the picture that is building up. We need a thorough, well-funded and sizeable study into the link between Roaccutane and the adverse effects that I have described. There is a clear need for stricter guidelines to medical professionals when prescribing the drug. The Department of Health should be clear about the risks and ensure that that advice permeates through every level of the NHS. Young lives are at stake and we can no longer afford inaction.”

Norman_LambThe counter-argument put forward by Norman Lamb (right) from the Department of Health must have disappointed Jonathan Medland and his wife Pam, who were in the audience. Mr Lamb said that: “All effective medicines are associated with a risk of side effects in some people … Unfortunately, it is impossible to predict which individuals will suffer a side effect from a medicine, but a medicine will be issued a licence only if it is considered that the benefits of treatment in the licensed indications outweigh the risks of side effects.”

Mr Lamb pointed out that “the safety of Roaccutane has been closely monitored by the Medicines and Healthcare products Regulatory Agency”, and also that “The Medicines and Healthcare products Regulatory Agency keeps this issue under close review. Any new information is carefully assessed to see whether there is a need to take action to alert health care professionals and patients.”

IanHudson1It is perhaps worth noting here that any endorsement by the MHRA should be placed in the context that the MHRA is fully funded by the pharmaceutical companies, from where many of its staff were recruited. For example, the present CEO is Dr Ian Hudson (left), who was formerly employed by GSK.

Mr Lamb promised none of the measures suggested by Sir Nick Harvey, but concluded by saying that: “I hope that I have been able to update the House on the measures in place to ensure safe prescribing of Roaccutane.”

Jonathan and Pam Medland had waited ten years to hear that, effectively, their loss is regarded as collateral damage and that they are expected to accept this.  Mr Lamb did at least promise a meeting some time in the future of bereaved parents and their MPs with officials of the Dept of Health. It is to be hoped that some or all of the measures suggested by Sir Nick may be introduced following this meeting.

Each of the young people that I have featured – Jon, David, Jason, Angela, Melissa, Jesse, Robbie, Jack and James – had been a talented individual, with the promise of a successful life in front of them. Their future was cut short by an invidious drug which an effective regulator would have dismissed many years ago.

The MHRA may have done nothing during the past 10 years to prevent further tragedies, but Jonathan Medland knows that his long struggle to raise awareness has been worthwhile. He said last year: “I know that we have saved lives – because of knowing what happened to Jon, people have decided not to take Roaccutane.”

Meanwhile, Derek Jones, father of Jesse, had a blunt warning for other parents: ‘This drug could drive your child to suicide. That risk is too high a price to pay for clear skin.’

 

PamJonathanNick
Pam and Jonathan Medland with Sir Nick Harvey, MP

Update (May 2017):

After the death of Luke Reeves, the MP and cabinet minister Ed Vaizey wrote an article in The Times, in which he called for more awareness of the propensity of Roaccutane to induce suicide.

He wrote: “Coroners should be made aware of the issue, so they can establish in relevant cases whether the drug was being used. There may be significant under-reporting. We need to continue to reinforce the warnings and make parents and teenagers fully aware of the risks. We should also work with dermatologists to ensure that there is no evidence that the drug is being over-prescribed when milder treatments might be just as effective.”

 

11 Replies to “Roaccutane in the Spotlight”

  1. I have been looking for support for many years regarding side effects of Roaccutane. My daughter was prescribed this drug about 24 years ago for acne – she was a model and was very self-conscious when attending interviews, she was 15 or 16 at the time so I had to sign for her to take the drug. I don’t think the full implications of the side effects were fully known at this early stage, and if they had said she could have depression for the rest of her life I would certainly not have signed. This is what has happened to my lovely bubbly daughter – she cannot cope with the stresses of everyday life and has been suicidal on many occasions. We have paid for her to have counselling but nothing has worked for her. Acne is a very depressing illness for teenagers at a very impressionable time in their life but nothing can prepare you for what can happen as a result of taking this medication.

    • Thank you very much for making contact and passing on your account of the damage that Roaccutane has done to your beloved daughter. This makes such sad reading, and I am so very sorry that Roaccutane continues to cause harm in the aftermath.

    • I sympathise. My daughter took this drug two years ago, for what I would call spots, not acne. She developed psychosis and became suicidal and was forced to give up her job. The effects on her teenage son and the whole family have been devastating. She is still trying to get better but it is a long haul. Some doctors admit that her illness has been caused by taking the drug, but no one will put it in writing!

  2. There are at least two more names missing from this list that we know about. Ollie Roberts died in September 2012 and Elliot Brandon died in 2010. Both had taken Isotretinoin (Roaccutane.). Please follow our Facebook page the Acne Awareness Group.

  3. My son Elliot Brandon took Isotretinon for 5 months. He had no history of mental health issues. He was happy, achieving all he wanted. 3 years later, still no other link or reason for him to have taken his life have come to light.
    The patterns, behaviours and, sadly for us, actions appear the same. How many more deaths of young people will be enough for some honesty and ethical decision making?

  4. My daughter took this drug, and I would like to kept aware of any new findings in order that I can monitor her moods to ensure that she receives any help necessary should this drug affect her adversely

  5. MHRA and pharmaceutical industry closeness is a concerning trend that has led to a massive number of failings, not only for this drug but for so many others. Ben Goldacre is a vocal activist on the issue and the numerous other failings that lead to dangerous drugs remaining on the market, or coming onto the market prematurely without adequate safety data.

    • Thank you for your comment, Tim. When the MHRA is completely funded and partly staffed by Pharma, right up to CEO level, it can hardly claim to be independent. Its attitude to regulation makes the banking industry regulators appear robust by comparison.

  6. I took Roaccutane over 10 years ago and I have suffered pretty severe side effects for over the past 4 years. Unfortunately for me, I ended up taking two courses of the drug, one in 2003 and another in 2004. The long term lasting effects of the drug were not perceptible to me after the first course. With hindsight, I realize that I could not feel the disease in my body which the first course had caused. So I went again for round two. There is a good chance, if I had not gone for round two, I would wouldn’t be having this conversation with you now. The disease caused from course 1 would have been to a level of imperceptibility.

    I might not have a PhD degree in medical science, pharmacology or bio chemistry, but I have ingested 14 grams of synthetic vitamin A. I can tell you, 10 years later it feels like shit. The realization for me, that this drug can become your worst nightmare was a gradual process. Not even the slightest of a heads up from my dermatologist in Dublin, but that is another story. The first permanent effects of the drug that I noticed was with my skin. My skin was thinner. It didn’t tan like it used to. Rather it just burnt. To this day my skin is weaker, less supple than it should be. Burnt from the inside out and lacking collagen. That was the first nasty thing I noticed. And then there is the issue with my ligaments and tendons. Also collagen deprived. Now in a calcified state, as the healing process in my body tried to fill in the collagen gaps.

    What I find most disappointing about the Roaccutane debate is the obsession with the talk of depression and the side effects which may result. You either have side effects or you don’t. Roaccuatne will either damage you or it won’t. No doubt Roche are happy with this conversation, because it it hides the real nasty truth behind Roaccutane. It is incredibly bad for your health. Yes, the majority of people who take it may say that it doesn’t, but it’s only because the disease which was caused by the course of treatment wasn’t strong enough for them to feel it.

    It’s a pity that Roche and dermatologists don’t acknowledge that every Roaccutane pill that you take is bad for you. It causes disease, across many systems in your body. Your only hope with Roaccutane is that the disease it puts into your body doesn’t reach a perceptible level.

    This is the conversation we should be having about Roaccutane.

  7. Just found this website, and want to add our support. Our wonderfully brave son Olly died aged 32 in 2012, having struggled for 11 years with the mental and physical side effects of this drug. It’s so awful to suffer bad acne and then to have to suffer a life of loss of joy, just because pharma out there seem unable or unwilling to devote some of their billions to developing a really good understanding of what causes acne and how it can be safely and properly managed or cured. This is surely not rocket science, and for the well being of our youngsters, it’s so important, but for as long as RoAccutane stays on the market, no one is seemingly going to bother to work on a proper treatment, apart from Blue Light and laser, which really does help. We must press for honest pharma, it is vital.
    Also, If it isn’t bad enough to have the acne and then a murderous drug to treat it, the final horror is to have psychiatrists and doctors who rubbish your suicidal feelings as attention seeking and through their taunting and dismissive approach, goad you into believing that there is no hope and death is the only option left to you because they seem unable to listen and credit what has happened to your brain, brainwashed by what the manufacturers are assuring them. If some of the cells in someone’s mind is ruined by this drug, they can’t do CBT and relaxation any more, because their mind just organically doesn’t allow them to think rationally any more. This is literally total hell on earth, and it is what, finally, our beloved son suffered. He left written wishes that we should help others. We must. Justice must prevail in the end. It has to, or we can’t call ourselves civilised and live with a pure conscience.

  8. I am 57 and was on Roaccutane about 5 years ago for an acne rash on my chest which was driving me crazy with the itch.
    I had already been on antibiotics for years with only little success. The dermatologist did warn me and ask me at the time if I had ever had depression, as this drug could cause low mood and depression. I admitted that I had but was so desperate to try it that I said I would monitor my mood closely and speak to my doctor if I went down.
    The side effect of drying up my skin was bad enough, and I was applying Vaseline to my lips about 100 times a day. But eventually I also started to become depressed and did not really connect it to the Roaccutane at first as I was having personal / relationship problems at the time anyway. Then I realised that I couldn’t take any more of the dryness or the depression and came off it.
    I shall never, ever take this poison again and would strongly warn anyone considering taking it to be very careful. There certainly should be a much stronger warning to patients about this, and they should be closely supervised while taking it.
    I think a much more serious assessment should be made before the start of any such treatment, and anyone under 21 should have a parent or guardian onside to help them through this.
    To say that young people with acne are self conscious and have low self esteem and are therefore more prone to low mood and suicide is most disingenuous – these kids were mostly very happy and positive beforehand. Roaccutane does work – this is why it is used as a last resort, usually by people who have become desperate for a cure.

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