The Most Effective OCD Treatment Reaches Almost No One: Here’s What We Can Do About It

Rebecca Deusser, MS, MBA and Sanjaya Saxena, MD

“It took me years to find out that what I was dealing with was OCD!”

This is a phrase all too often repeated by people living with obsessive compulsive disorder. Currently, individuals live with OCD for an average of 7 years (Dell’Osso et al, 2019) before they even receive a diagnosis, all while symptoms may intensify and daily life often becomes increasingly constrained. 

Clinicians, researchers, and advocates have long raised this concern. What has been missing is clear data behind how many people with OCD in the U.S. are missed in clinical settings or are not receiving the most effective treatment.

When the International OCD Foundation undertook this analysis, the scale of the problem became unmistakable. Millions of people in America are currently struggling with OCD without the most effective treatment.

The challenges we detail in our new white paper, America’s OCD Care Crisis: National Findings on the Failure of Effective OCD Treatment to Reach Patients, are significant, but fixable. They are symptoms of structural oversights that can be changed. Effective, evidence-based treatment for OCD exists, and through intentional action, we can dramatically change these unacceptable outcomes for people with OCD.

Where People With OCD Fall Through the Cracks

Well established prevalence rates for OCD indicate that nearly 10 million people in America — roughly 3% (Ruscio et al, 2010; Stein et al,2025; Ringeisen et al, 2025) — will have OCD at some point in their lives. Yet our findings suggest that 75% of them are never even identified, and up to 95% aren’t receiving the most effective treatment for the disorder.

In our analysis, we discovered significant systemic breakdowns at several key points of a patient’s journey: screening, diagnosis, referral, and treatment.

  • Screening and Diagnosis: Receiving a clinical diagnosis is an important step toward recovery as it promotes understanding and opens paths to effective treatment. Yet our findings suggest that this crucial initial step is missing for many millions of people. Of the 10.4 million patient records reviewed in our analysis, only 0.51% received a formal OCD diagnosis, far below the 3% expected prevalence rate. 
  • Referral to appropriate care: After a diagnosis is obtained, a handoff to appropriate care is needed to keep the patient from falling out of the treatment pathway. Here, too, we found an alarming gap within our sample: more than 72% of patients identified as having OCD did not receive a referral for cognitive-behavioral therapy (CBT), the most effective treatment for OCD.
  • Effective Treatment: Decades of research has established Exposure and Response Prevention (ERP) therapy, a specific form of CBT, as the most effective, first-line therapy for OCD. Yet, an astounding 95-98% of people with OCD had not received ERP treatment. Even when people seek help — and even when they are diagnosed — the vast majority never reach the treatment most likely to help them recover.

What We Can Do About It

The breakdowns seen in each step of the care pathway reinforce the focus of IOCDF’s Vision 2030, our five-year strategy to address the systemic barriers that keep effective OCD treatment out of reach.

While the findings are stark, they illuminate many opportunities for change:

  • Identify symptoms earlier by implementing routine OCD screening in primary healthcare and mental health settings.
  • Support clinicians in better understanding and treating OCD by expanding training in assessment, diagnosis, and evidence-based treatment modalities.
  • Help people receive care that works by strengthening adherence to existing professional treatment guidelines.
  • Increase the number of people with OCD who receive effective treatment  by supporting affordable access to ERP and other evidence-based therapies.
  • Let people know they’re not alone by raising accurate public awareness of what OCD really is — and that it is treatable.

Vision 2030 outlines how the IOCDF is committing its resources, partnerships, and expertise toward advancing these priorities — by increasing awareness and community, expanding access to effective treatment, and advancing research. Together, these efforts are designed to work in concert, improving clinical training, implementing screening for early identification, strengthening pathways from diagnosis to care, and increasing the likelihood that people receive evidence-based treatment.

At the same time, the scale of the problem revealed in this report makes clear that progress depends on collective action across the field. Clinicians, health systems, educators, researchers, policymakers, advocates, and people with lived experience all have a role to play. Together, these efforts can help ensure that people with OCD reach effective treatment sooner, reducing years of unnecessary confusion and distress. 

How You Can Help

Join us in building better access to effective treatment for people with OCD:

The current state of treatment for OCD in the U.S. is sobering, but it is not the end of the story. OCD is treatable, recovery is possible, and change can happen as awareness grows and access expands. With continued effort, the gap between how many are struggling and how many receive effective care can begin to close. A brighter future is possible — and we can build it together.

References

  1. Dell’Osso, B., Benatti, B., Grancini, B., Vismara, M., De Carlo, V., Cirnigliaro, G., Albert, U., & Viganò, C. (2019). Investigating duration of illness and duration of untreated illness in obsessive compulsive disorder reveals patients remain at length pharmacologically untreated. International Journal of Psychiatry in Clinical Practice, 23(4), 311–313. https://doi.org/10.1080/13651501.2019.1621348
  2. Ruscio, A. M., Stein, D. J., Chiu, W. T., & Kessler, R. C. (2010). The epidemiology of obsessive-compulsive disorder in the National Comorbidity Survey Replication. Molecular Psychiatry, 15(1), 53-63. https://doi.org/10.1038/mp.2008.94
  3. Stein, D. J., Ruscio, A. M., Altwaijri, Y., Chiu, W. T., Sampson, N. A., Aguilar-Gaxiola, S., Al-Hamzawi, A., Alonso, J., Chardoul, S., Gureje, O., Hu, C., Karam, E. G., McGrath, J. J., Navarro-Mateu, F., Scott, K. M., Stagnaro, J. C., Torres, Y., Vladescu, C., Wciórka, J., Xavier, M., … Kessler, R. C. (2025). Obsessive-compulsive disorder in the World Mental Health surveys. Research Square, rs.3.rs-6090427. https://doi.org/10.21203/rs.3.rs-6090427/v1
  4. Ringeisen, H., Edlund, M., Guyer, H., Dever, J., Carpenter, L., Olfson, M., First, M., Geiger, P., Liao, D., Peytchev, A., Carr, C., Chwastiak, L., Dixon, L. B., Monroe-Devita, M., Scott Stroup, T., Swanson, J., Swartz, M., Gibbons, R., Stambaugh, L., Bareis, N., … Mental Health and Substance Use Disorders Prevalence Study Consortium (2025). Prevalence of past-year mental and substance use disorders, 2021-2022. Psychiatric Services (Washington, D.C.), 76(8), 720–728. https://doi.org/10.1176/appi.ps.20240329

IOCDF Training & Resources for Clinicians

When clinicians have easier access to best practices in OCD diagnosis and treatment, more people can receive effective care. The IOCDF’s Training Institute offers evidence-based programs for clinicians at every stage of practice, including:

  • A robust, on-demand webinar catalog (CE-eligible!) covering fundamentals, modalities, related disorders, and comorbidities. The catalog includes access to the free webinar, OCD Basics. 
  • IOCDF’s Training Institute offers intensive workshops and events, consultation groups, and more for clinicians of every level.
  • Professional Members at the IOCDF join a nationwide network of committed professionals, are eligible for listing on our Resource Directory, and have access to special pricing for Training Institute offerings.

The post The Most Effective OCD Treatment Reaches Almost No One: Here’s What We Can Do About It appeared first on International OCD Foundation.

It Is the Journey, Not the Destination: Moving From End Points to Trajectories When Assessing Chatbot Mental Health Safety

Large language models are rapidly becoming embedded in everyday life through artificial intelligence (AI) chatbots that people use for practical assistance and companionship, as well as for support with mental health and emotional wellbeing. Alongside clear benefits, clinicians and public reports increasingly describe a minority of users whose interactions seem to drift over days or weeks toward strongly questionable convictions, delusions or suicidal crises. Importantly, clinically meaningful deterioration can occur even without overtly unsafe text outputs, via more insidious processes such as compulsive use and sleep disruption, as well as withdrawal from human contact and progressive narrowing of attention around the chatbot relationship. In this Viewpoint, we argue that risk often arises not at a single tipping point but through trajectory effects that accumulate across extended dialogue, and that prevailing safety evaluation approaches are misaligned with this reality because they primarily score risk at discrete conversational endpoints often reached through scripted dialogues lasting just a single turn or several turns. Mental health benchmarks and safety suites (including clinician-informed efforts) have advanced the field by testing refusal behaviour, toxicity, and adversarial prompting, but they often treat the last message as the unit of analysis and therefore miss when risk-relevant relational cues, signs of validation, contradiction handling, and shifts in certainty first emerge and how they compound. We propose that mental health safety assessment should shift from endpoints to trajectories by 1) treating the whole dialogue, not just the end result, as the focus of evaluation; 2) reporting turn-by-turn dynamics such as delusion confirmation and harm enablement, as well as timing and persistence of safety interventions; and 3) calibrating short multi-turn tests against longer, clinically realistic interaction sequences that can reveal context-length effects and drift. We further argue that transcript-only evaluation is insufficient in mental health contexts. Similar language can reflect very different internal states, and the relationship between expressed psychopathology and real-world harm is non-linear. Safety research should therefore incorporate proximal human outcomes after interactions (e.g., shifts in certainty, openness to counterevidence, arousal, urge to continue, and subsequent sleep or behaviour) and build prospective clinical surveillance infrastructure that supports consented transcript donation and linkage to health outcomes. Together, these steps would enable benchmarks that are clinically relevant and better aligned with the kinds of harms now being observed in real-world chatbot use.
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<![CDATA[As Canada approaches the planned implementation of their medical euthanasia program for patients with sole psychiatric illnesses, these authors make an argument as to why euthanasia should remain closed to patients with psychiatric disorders.]]>

Social cognitive deficits and altered multi-brain dynamics during problem-solving in heroin abstainers: An fNIRS hyperscanning study

Despite extensive research on the neurobiology of addiction, little is known about how repeated drug use and withdrawal are related to social functioning impairments in humans, a highly social species. This obscures the broader societal impact of drug addiction and limits treatment efficacy. This study examined social cognitive impairment and its multi-brain neural underpinnings during socially interactive problem-solving in heroin use disorder (HUD), and further explored their co-occurrence with protracted withdrawal symptoms.

How an Alzheimer’s Risk Gene Rewires the Brain Decades Before Symptoms

For millions of people worldwide, carrying the APOE4 gene variant means a significantly higher risk of developing Alzheimer’s disease. Yet one of the biggest unanswered questions has been when, and how, that risk begins to take hold in the brain.

New research from the Gladstone Institutes, published in Nature Aging, suggests that the effects of APOE4 emerge far earlier than previously understood. The study shows that subtle but important changes in brain activity occur long before memory loss begins, offering a potential window for early intervention.

Early changes in a seemingly healthy brain

Alzheimer’s disease is typically diagnosed after cognitive symptoms appear, but growing evidence suggests that the disease process begins decades earlier. The new study adds to this picture by demonstrating that brain circuits in young individuals carrying APOE4 are already functioning differently.

We found fundamental changes in brain circuits occurring in young mice that still had normal learning and memory, and importantly, that those changes predicted the development of cognitive deficits at older ages, ” said Misha Zilberter, PhD, principal staff research scientist at Gladstone and senior author of the study.

The researchers observed increased neuronal activity in the hippocampus, a brain region essential for learning and memory. Similar patterns of hyperactivity have been reported in human APOE4 carriers, even before clinical symptoms arise.

According to the scientists, this suggests that Alzheimer’s risk is not simply a matter of late-stage degeneration, but may instead involve long-term changes in how brain circuits are wired and function.

Smaller neurons, stronger signals

To understand what drives this early hyperactivity, the team examined individual brain cells. They found that neurons in key regions of the hippocampus were physically smaller in APOE4 carriers compared to those with the more common, lower-risk APOE3 variant.

While this might seem like a minor structural difference, it has functional consequences. Smaller neurons are more easily activated, meaning they fire more readily in response to stimuli. This heightened sensitivity can lead to persistent hyperactivity within neural circuits.

Over time, this imbalance may place stress on the brain and contribute to the gradual decline seen in Alzheimer’s disease.

A surprising source of dysfunction

For years, researchers believed that APOE4’s effects were primarily driven by astrocytes, support cells in the brain that produce most of the APOE protein. However, the new findings challenge this assumption.

The team discovered that the disruptive effects on brain activity were instead linked to APOE4 produced directly by neurons themselves. When APOE4 was removed from neurons, their size and activity returned to normal. Removing it from astrocytes, by contrast, had little effect.

This shift in understanding refocuses attention on neurons as key drivers of early disease processes, rather than passive victims of surrounding dysfunction.

A reversible pathway—and a new target

Perhaps the most striking finding of the study is that these early changes may not be permanent.

The researchers identified a protein called Nell2 as a central player in the process. Levels of Nell2 were elevated in APOE4 neurons and appeared to drive both the reduction in cell size and the increase in neuronal activity.

By reducing Nell2 levels in adult mice, the team was able to restore normal neuron structure and function—even after the changes had already occurred.

“What’s exciting about Nell2 is that we were able to reverse the disease manifestations in adult mice by lowering its level,” said Yadong Huang, co-senior author of the study. “That tells us the damage is not irreversible […].”

This raises the possibility of developing therapies that target Nell2, potentially slowing or preventing disease progression in individuals at high genetic risk.

Implications for early intervention

APOE4 is present in roughly one in four people and in the majority of Alzheimer’s patients. Despite this, current treatments largely focus on late-stage symptoms rather than early prevention.

The new findings suggest that intervening earlier, before cognitive decline begins, could be key. If brain circuit changes can be detected and corrected at an early stage, it may be possible to delay or even prevent the onset of Alzheimer’s disease.

The study also highlights the importance of understanding how genetic risk translates into functional changes in the brain. Rather than acting as a simple risk marker, APOE4 appears to actively reshape neural activity over time.

A shift in perspective

More broadly, the work reflects a growing shift in Alzheimer’s research, from focusing solely on hallmark features such as amyloid plaques and tau tangles to examining earlier, subtler changes in brain function.

By identifying a concrete pathway linking genetic risk to altered brain activity, the study provides a clearer framework for understanding how the disease develops.

“This study is a big breakthrough for the field of Alzheimer’s research,” Huang said. “It opens the door to a better understanding of how APOE4 alters the function of neurons at a young age to increase risk of cognitive decline, and to the development of therapies that could block the detrimental effects of APOE4 early on.”

While the findings are based on mouse models, they align closely with observations in humans and offer a strong foundation for future research. The next steps will involve determining whether targeting Nell2 or similar pathways can produce similar benefits in human patients.

If successful, such approaches could transform how Alzheimer’s disease is treated, not as an inevitable consequence of aging, but as a process that can be detected early and potentially reversed.

The post How an Alzheimer’s Risk Gene Rewires the Brain Decades Before Symptoms appeared first on Inside Precision Medicine.

<![CDATA[Often the best opportunities for mental health growth come when psychiatry, religions, and spirituality can enhance one another.]]>

The Unspoken Toll: Why Exam Pressure Must Be Part of the Youth Mental Health Discussion

A Conversation with Tatum Redmond and Amanda van der Vyver-Anderson from Community Keepers, South Africa


By Mai El Shoush, Partnerships Campaign Manager, Stavros Niarchos Foundation (SNF) Global Center for Child and Adolescent Mental Health at the Child Mind Institute


Community Keepers is an award-winning organization based in Stellenbosch, South Africa, which works to improve the social and emotional well-being of learners and their caregivers. The SNF Global Center at the Child Mind Institute works with the organization to further advance the comprehensive mission of transforming schools into safe spaces where student well-being is prioritized alongside academic achievement. This includes strengthening the workforce to expand evidence-based support and brief interventions through low-intensity psychological therapy approaches.

While addressing the workforce gaps, the partnership has yielded valuable insight into the essential competencies front line workers require to effectively support young people experiencing mental health challenges. Together with other NGOs, Community Keepers has also been instrumental in strengthening the process of developing context-sensitive and culturally appropriate training materials scheduled for pilot implementation in South Africa later this year – representing an important step towards strengthening mental health care systems for underserved communities. The partnership also extends beyond training development, as the SNF Global Center at the Child Mind Institute continues to collaborate closely with Community Keepers on an upcoming randomized control trial (RCT). The scientific evaluation will assess both the feasibility of establishing a virtual clinic for young people and the effectiveness of remotely delivered cognitive behavioral therapy (CBT) interventions via video consultations. The research is intended to expand access to equitable and quality mental health care for young people across South Africa. Tatum Redmond has been a care facilitator in one of the Community Keepers’ high school-based offices, while Amanda van der Vyver-Anderson is an educational psychologist and heads the training and development of Mental Health First Aiders for internal and external staff.

Amanda van der Vyver-Anderson

How important is it to approach issues such as academic pressure within the wider conversation around youth mental health in South Africa, and beyond?

It is critical to integrate discussions of exam stress into the broader dialogue surrounding youth mental health, both here in South Africa and internationally. We see countless students under immense pressure to not only pass, but also secure their future prospects and meet family expectations. This is unfortunately often dismissed as “just school” or a “normal” experience. However, it impacts a substantial number of young people, often more severely than we acknowledge. And the level of support available is not equitable across the board. Addressing this is crucial because of the detrimental effects on core cognitive functions — and ultimately, academic performance — as well as the significant toll on mental health. This can manifest as anxiety, burnout, and even depression.

In what ways can exam-related stress connect to broader mental health challenges?

While a certain level of stress can serve as a beneficial motivator, severe distress can lead to cognitive shutdown. This specifically impacts the executive functions — planning, organizing, prioritizing, working memory, focus, and concentration — that are fundamental to preparing for exams. This shutdown can then create a detrimental, ongoing cycle of heightened stress about exams or the future, coupled with a decline in the ability to take effective action.

It’s vital to recognize that exam stress does not merely stay in the exam room — it can be a gateway to larger mental health challenges. Constant stress regarding school performance, marks, or the fear of failure can escalate into conditions like anxiety, chronic overwhelm, or depression. Students may experience sleep disruption, poor nutrition, and feelings of inadequacy. And these symptoms often persist long after the test is over. Compounding this is the reluctance of most students to seek help because they believe their feelings are normal or fear appearing weak. Yet, if left unaddressed, sustained pressure along with these symptoms can profoundly affect their psychological well-being.

Tatum Redmond

What role do community-focused organizations such as Community Keepers play in linking academic stress to systematic youth mental health support and improvement?

Organizations like Community Keepers play a truly pivotal role — not merely as emergency responders but as an integrated support system within educational institutions as well. Crucially, they move beyond immediate crisis response by collaborating with schools to develop long-term support and to provide safe spaces to engage in dialogue. They offer genuine attention and care when learners are struggling with school demands, exams, and family pressures.

The approach is not just “addressing stress today” but asking, “How can we create an enduring environment where young people feel safe, supported, and connected?” Doing this requires collaboration with the learners themselves, educators and school staff, as well as parents, caregivers, and community leaders.

What factors make schools uniquely positioned to be safe and supportive spaces?
Schools are exceptionally well-positioned to serve as safe and supportive spaces for students for several key reasons:

  • Learners spend a substantial portion of their day at school, making it a primary setting where adults can observe signs of distress, anxiety, or coping difficulties.
  • Schools have the opportunity to house critical personnel — teachers, counselors, and external partners like Community Keepers — who are on hand to offer support or a listening ear.
  • The curriculum can extend beyond academic skills and learning. It can include mental health and emotional literacy, stress management, and peer support.
  • When a school actively fosters an environment of safety, respect, and validation, it fundamentally alters how learners navigate pressure, stress, or complex personal problems. Having a guaranteed safe space at school is deeply stabilizing for the mind.

How can the goal of securing mental health support as a pillar of education be reached?
Achieving the goal of establishing mental health support as a solid, non-negotiable pillar of education requires several strategic commitments:

  • Schools must actively allocate resources for it, ensuring adequate numbers of support staff, rather than relying on minimal provision. Teachers need training to recognize signs of distress and respond helpfully and appropriately.
  • Mental health literacy must be integrated into the curriculum. Instead of only focusing on academic subjects, topics like stress management, emotional intelligence, and maintaining healthy relationships should be covered.
  • The government must demonstrate a serious commitment, including mental health support in education budgets, developing clear policies, and ensuring rigorous follow-through.

How have your practices and initiatives in promoting and supporting schools as safe spaces made meaningful change?
We’ve observed tangible change in the learners’ attitudes; those who feel comfortable expressing their emotions are generally happier and more resilient because they have established a safe, non-judgmental space where trust is built.

What role can teachers and school leadership play as partners in creating an evidence-based supportive learning environment? Where are the gaps in building capacity and how can they be better supported?
Educators and school leadership are essential partners in establishing an environment that successfully supports learner mental health and cultivates a culture of well-being. They can do so by:

  • Prioritizing both the physical space and curriculum time necessary for learners to engage with support services.
  • Serving as role models who embody and encourage emotional regulation and actively normalize help-seeking behaviour.
  • Remaining deeply cognisant of factors that contribute to learner distress so as to not inadvertently exacerbate it.

Investing in staff wellness and support, capacity building, and policy reform is not merely beneficial, but a foundational requirement to capacitate educators effectively. This allows them to sustainably support the mental health of their entire school community.

The SNF Global Center’s work in South Africa is carried out through the Child and Adolescent Mental Health Initiative (CAMHI South Africa). We are proud to expand the partnership with Community Keepers and value their collaboration towards co-creating scalable, school-centered mental health approaches that authentically respond to the diverse lived-experiences of young people.

The post The Unspoken Toll: Why Exam Pressure Must Be Part of the Youth Mental Health Discussion appeared first on Child Mind Institute.

Supreme Court conversion therapy decision could ripple through medicine

The U.S. Supreme Court ruling this week against Colorado’s ban on licensed mental health providers engaging in gender and sexuality “conversion therapy” could narrow the authority of state medical boards to regulate aspects of health providers’ care that involves speech, according to legal experts. The implications could extend far beyond matters related to LGBTQ+ rights to other forms of talk therapy, telehealth, and physician advice on Covid-19, vaccines, or reproductive care.

Because the therapist who challenged the law, Kaley Chiles, engages in talk therapy — without prescribing medications or having any physical contact with patients — the majority decided that the Colorado law constitutes a restriction on her speech due to her particular viewpoint, or opinion. In an 8-1 decision, the judges sent the case back to a lower court for a higher level of judicial scrutiny, which will likely result in the ban being overturned. 

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GLP-1 Receptor Agonists in Psychiatry: A Pharmacoepidemiological Scoping Review

Pharmacoepidemiological studies have expanded the capacity to detect therapeutic benefits and adverse drug effects of medications. In the case of glucagon-like peptide-1 receptor agonists (GLP-1RAs), their fast uptake for treating diabetes and obesity has generated substantial real-world experience, facilitating exploration of benefits for additional indications. In the context of psychiatric disorders, studies based on pharmacovigilance data and large electronic health record (EHR) databases have shown that initial concerns regarding suicidality with GLP-1RA were not supported by the evidence.