– 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:
- Become a member of our grassroots advocacy community.
- Share America’s OCD Care Crisis and other IOCDF resources with your clinicians and healthcare professionals.
- Donate to the IOCDF to support training programs, advance research, and raise awareness of OCD and related disorders.
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
- 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
- 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
- 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
- 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.
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