Obsessive-compulsive disorder (OCD) affects around 3% of the global population, yet it remains one of the most misunderstood and underserved mental health conditions. This is compounded by the fact that the public’s understanding of OCD is still often shaped by stereotypical notions of cleanliness, checking or order – misconceptions that make it harder for people not only to recognise they are experiencing an illness, but to talk openly about what they are experiencing, too. Nevertheless, the reality is that OCD is much more complex than the media tropes would have us believe and far more devastating than its often-trivialised portrayal suggests.
You see, intrusive thoughts, fears and doubts can become so persistent that they take over large parts of a person’s day. And even when they are recognized as being irrational, patients still turn to compulsions in an attempt to manage the associated distress. In turn, this reinforces a self-perpetuating cycle, where the temporary relief provided by a compulsion strengthens the urge to perform it again. That is why for someone with severe OCD, many hours of the day can be lost to checking, repeating, avoiding, ruminating or simply seeking reassurance. As the disorder commonly begins in childhood or adolescence, this also means that years of a person’s life can be shaped by OCD before they even start to receive any appropriate care.
That is time they can never get back.
In fact, help can take so long to arrive that delays over a decade are not uncommon. This may be in part due to an individual’s inability to communicate their symptoms, especially when the thoughts themselves are shameful or against their personal values. But a healthcare system that lacks the specialist knowledge and accessible treatment only adds to the wait. Yet even when OCD has been diagnosed, patients are met with therapies that have barely changed in more than 30 years. So, it’s an uphill struggle to get there, but even then, the struggle is far from over. And for some, the consequences will prove fatal, as OCD is associated with a heightened risk of suicidality.
That is why correcting the narrative and advancing the science is so timely and important.
Currently, the main pharmacological treatment for OCD is selective serotonin reuptake inhibitors, or SSRIs for short. But despite these medicines proving effective for some, they fail to provide an adequate response in 40–60% of patients. As OCD often requires a higher dose than depression, the side effects that can be introduced may prove difficult to tolerate, which may provide another reason for patients to discontinue their use. And for people who have already spent years of their life waiting for help to arrive, this ineffectiveness can be frustrating – especially as the next step may simply be another SSRI, an even higher dose, or another long period of waiting to see if anything actually changes for the better.
Cognitive behavioural therapy (CBT), namely exposure and response prevention (ERP), offers another important treatment option. In fact, this psychotherapy is the gold standard treatment for OCD and can be highly effective. However, just as we’ve seen with SSRIs, it is not without its limitations. To start, specialist therapists are too few in number. This means waiting lists can be long, while private treatment can prove unaffordable for many others. ERP can also be emotionally demanding, as it requires people to confront the thoughts and situations they fear the most while resisting the compulsions that have for so long served as a way of reducing the anxiety. Equally, it may even be impossible for patients to commit to the therapy’s time-consuming schedule as other life commitments take precedence.
That means getting the treatment is one thing, but getting it to work for them is another.
Speaking of everyday lives, it’s also important to recognize that the impact of OCD extends far beyond the person who is diagnosed. Families and friends can become embroiled in rituals or reassurance, at times even – involuntarily – accommodating the disorder, while relationships, education and employment can all succumb to the strain. As such, the true impact of OCD can only be accurately considered if we take a whole of society approach; one cost-of-illness analysis estimated that the annual societal cost of OCD in the UK was more than £5 billion, rising to around £10.7 billion when additional productivity losses were taken into account. And this is what makes the gap in OCD treatment particularly important, as the current options don’t improve the patient experience in the way that they should (at least, not for a high proportion of patients).
Yet there has been remarkably little pharmacological innovation across the sector to provide patients with any viable alternative.
Strangely, despite the long absence of investment, our scientific understanding of OCD has never been so mature. Research has already implicated a network of brain circuits in compulsive behaviour and scientists are increasingly investigating biological systems beyond serotonin. For example, glutamate and GABA have emerged as important pieces of the puzzle, as have dopamine and the mechanisms involved in neuroplasticity. Human research has connected these biological findings with the experience of those with OCD; brain-imaging studies conducted by researchers at the University of Cambridge have identified relationships between glutamate and GABA in cortical regions involved in cognitive control and compulsive behaviour, while genetic studies are providing new clues about the biological pathways that may contribute to heritability. Commonalities have also been identified with other disorders of compulsivity, such as body dysmorphic disorder (BDD), trichotillomania (TTM), and excoriation disorder (skin picking). This makes OCD not only a disorder deserving of attention in its own right but an important archetype that could provide therapeutic insights into a whole class of conditions.
In other words, we have never known so much, which in turn should mean we can do a lot more.
In particular, these advances raise the possibility that future treatments could be designed around the mechanisms that are driving OCD symptoms rather than having to rely on medicines that have been developed for other conditions. As a consequence, this could also result in options that are far more effective and targeted, offering a means to deliver greater relief to the millions of people suffering worldwide. There is even the potential for a more personalized approach, in which biological markers might help to identify which treatments are most likely to benefit particular subgroups of patients.
If realized, it would deliver a standard of care like we have never seen before. And crucially, the foundations are already being laid. That potential is very much here.
But scientific progress only really matters if it changes what life looks like for those living with OCD. That’s because for someone who has spent years losing hours to their obsessions and compulsions, meaningful progress should mean a significant change in their lives. Time to see family and friends, to work, to study, to make plans, or simply to get through a day without OCD dictating what they can and cannot do. Time that is no longer consumed by rituals, avoidance, rumination or reassurance seeking, but instead spent living their own life however they see fit – outside of the shadow that is OCD.
They deserve that, so as a sector and as a society we must do better.
Photo: kieferpix, Getty Images
Dr. Nick Sireau is Executive Chairman and co-founder of Serenatis Bio, a Cambridge-based biotechnology company developing novel treatments for obsessive-compulsive disorder (OCD). He is also the founder of Orchard OCD, an organisation dedicated to advancing OCD research and treatment. Nick brings both professional and personal experience to the development of new treatments for OCD, as well as extensive experience in biotech and patient advocacy. He previously led clinical development work that resulted in the first approved treatment for alkaptonuria, a rare genetic disease affecting his own children.
Hannah Ellis is the Communications Officer at Serenatis Bio, where she is responsible for the company’s public outreach. With a passion for science communication, she is committed to correcting the narrative around OCD and broadening the discussion to help raise awareness of the need for better understanding, research and treatment.
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