Why Members With OCD Wait 17 Years for the Right Care

It takes an average of 17 years for someone with OCD to reach treatment.¹ Most of those years are spent in care that isn't working, and the cycle restarts every few years.

That gap was the subject of a recent Becker's Hospital Review webinar with Stephen Smith, CEO of NOCD, and Dr. Jamie Feusner, Chief Medical Officer at NOCD, alongside Janice Rybicki, our Senior Director of Client and Provider Success. Dr. Feusner noted the delay may be shortening, with newer research putting it closer to 13 years to diagnosis and another year and a half before treatment starts.² Either way, we’re talking about more than a decade for individuals to get the right diagnosis and into the right type of treatment. Here’s where the path breaks.

Why This Belongs on a Health Plan's Radar
Janice put the lifetime prevalence at 4.1% once OCD-related conditions like hoarding and body-focused repetitive behaviors are counted. Those members aren’t missing from a health plan's spend. They're in it, under other labels.

Stephen described the sequence plainly: people with OCD get misunderstood, then misdiagnosed, then mistreated, then miscoded, and the cost of everything that follows gets attributed to the wrong condition. Janice said the same thing from the utilization side. Care is getting used, just not the care that works.

And when OCD goes unrecognized, it shows up in other ways. Stephen was direct about where it goes: people become more likely to develop substance use disorders, and more likely to die by suicide.³

The First Screen Never Asks the Question
Most members get a PHQ-9 or a GAD-7. Neither asks about intrusive thoughts, rituals or compulsions, so OCD stays invisible at exactly the moment a plan or provider has the member's attention. More than half of OCD cases are misdiagnosed at that first evaluation.⁴

The content of the intrusive thoughts is part of the reason. OCD obsessions are frequently taboo: violent, sexual, religious or relationship-based, and contradictory to the person's own values. Dr. Feusner's point was that these are the presentations clinicians recognize least often, so the members who need a specialist most are the ones the system is least likely to identify.

Stephen lived this himself. When his symptoms started after his sophomore year of college, he was too embarrassed by the fears to describe them. The in-network therapist he saw told him he was just having anxiety, and the next provider diagnosed generalized anxiety disorder. Anxiety is often what a person with OCD shows on the surface, so anxiety is what gets treated. As Stephen put it, it's up to the provider to ask why someone is anxious.

The Directory Sends Members Somewhere Faster Than It Sends Them Somewhere Right
A directory listing and real appointment availability are two different numbers. When Janice ran a health plan case management team, finding one provider with an open slot took roughly 100 calls.

Specialty care narrows it further. A provider may list OCD alongside 10 or 12 other conditions and never list exposure and response prevention, the gold standard therapy for OCD, as a modality at all. When Stephen finally found a specialist for his own OCD, she had a seven-month wait list and charged $350 an hour in cash.

Offered a seven-month wait for the right clinician or a Tuesday with the wrong one, almost everyone takes Tuesday.

The Wrong Treatment Costs Ground
Reassurance feels like good therapy, but for someone with OCD, it becomes another compulsion. Dr. Feusner walked through the mechanism on the webinar: when a clinician reassures a patient that the feared thought isn’t true, the patient feels better for an afternoon, the obsession comes back harder and the pull to seek reassurance the next time is stronger. Cognitive restructuring can backfire the same way, becoming one more mental ritual. The first clinician Stephen saw told him to snap a rubber band on his wrist every time he had a thought. He got worse.

Stephen's point was that the wrong treatment doesn’t simply delay recovery. It escalates people into higher levels of care faster.

Then people drop out of care. A few years later they try again, usually with another generalist. That’s the cycle living inside the 17 years. Everyone gets seen but few get well.

What Closing It Actually Takes
NovaOne and NOCD have worked this problem together since 2019. Our approach starts with education in the member's own words instead of clinical labels, then a screener asks about specialty conditions, not just depression and anxiety. From there, members are matched with the best evidence-based provider based on the screening results, and their outcomes are tracked and reported back to the plan. Our standard is an appointment within five days.

Early results from our shared cohort point the same way. Emergency department, urgent care and behavioral health inpatient and residential use all fell after members started specialty treatment with NOCD. Median OCD symptom severity dropped 46%, and comorbid depression and anxiety fell alongside it. For context, a full response in OCD is a 35% reduction. Stephen noted the pattern has replicated across other payer populations NOCD has studied, and Dr. Feusner added that the savings show up outside behavioral health as well. A deeper multi-year analysis of our own cohort is underway.

Adding a specialist to the network was never the hard part. Getting the member to that specialist on the first try is.

If you take one thing from this post, take Stephen's closing ask: when a member screens positive on a GAD-7 or a PHQ-9, ask a few questions about intrusive thoughts and rituals before you route them. That’s the cheapest intervention on this list and it’s the one that keeps the cycle from starting over.

You can listen to the entire conversation on demand here.

If you’re working through how your own population reaches specialty behavioral healthcare, we would be glad to share what we’re seeing. Connect with the NovaOne team.

Sources:
1. Defining and Addressing Gaps in Care for Obsessive-Compulsive Disorder in the United States, Psychiatric Services, 2021
2. Ziegler et al., Long durations from symptom onset to diagnosis and from diagnosis to treatment in obsessive-compulsive disorder, PLOS ONE, 2021
3. Fernandez de la Cruz et al., Suicide in obsessive-compulsive disorder: a population-based study of 36,788 Swedish patients, Molecular Psychiatry, 2017
4. Glazier, Swing and McGinn, Half of Obsessive-Compulsive Disorder Cases Misdiagnosed: Vignette-Based Survey of Primary Care Physicians, The Journal of Clinical Psychiatry, 2015
5. Closing the Gap to Evidence-Based Care: What Health Plans Can Do About the 17-Year OCD Diagnosis Delay, Becker's Hospital Review webinar with NovaOne and NOCD, September 2026