50,000 HIV Patients Are Still Seeing Their Doctor.
They Haven't Filled ART in Six Months.
ART = antiretroviral therapy · Still in care. Not on treatment.
An analysis of 526,577 patients on oral antiretroviral therapy (ART) in 2022 found that one in three was no longer filling ART two years later. The conventional explanation — patients switching to long-acting injectables — accounts for less than 3%. Approximately 50,000 patients continued to have HIV-coded medical visits without a corresponding ART pharmacy fill. They are not lost to the healthcare system. They are being seen — an average of 20 times per year — without being reconnected to their HIV prescription.
Where 526,577 Oral ART Patients Went Over Two Years
2 Cabenuva via HCPCS procedure codes. Some injectables billed under alternate codes may not be captured; true migration rate may be modestly higher.
3 Same prescriber NPI on last ART fill and recent B20 visit, with viral load (CPT 87536) or CD4 (CPT 86360) lab order at or near the visit.
45% Were Perfectly Adherent Before They Stopped
Among the patients who disengaged, nearly half showed no warning: stable monthly refills averaging 16 per year, then abrupt cessation.4 This "sudden stop" pattern occurred across all payer types — 31% commercial, 37% Medicaid, 16% Medicare — ruling out Medicaid coverage disruption as the sole explanation. The remaining 55% split between gradual drifters (widening gaps before cessation), already-intermittent fillers, and single-fill patients. Each pattern implies a different intervention. But the most counterintuitive finding is what happens when these patients return.
Annual healthcare encounters with disengaged patients — 20.5 medical visits + ~44 non-ART pharmacy fills per patient per year. The system sees them. It does not reconnect them to ART.5
The Patients Most Likely to Return Are Not the Ones You'd Expect
The implication: the largest group of lapsers (sudden stoppers, ~24,000 patients) is also the hardest to recover. The most recoverable groups (drifters and intermittent fillers, ~17,000 combined) show detectable warning signs — widening refill gaps — months before they fully stop. Among all lapsers with continued HIV medical visits, 71% eventually returned to treatment, with 38% returning within 12 months.
5 Disengaged patients averaged 20.5 medical visits and 44.3 non-ART pharmacy fills annually — higher than retained patients (19.7 visits, ~40–43 non-ART fills).
361 Prescribers. One-Quarter of the Problem.
Disengagement is concentrated enough for targeted intervention. The top 5% of prescribers (361) account for 24% of all disengaged patients. The top 20% (1,444) account for 57%. These prescribers are largely already within manufacturer field-force target lists. Among the "Seen Not Treated" population, 10,600 patients are still seeing the same provider who last prescribed their ART — and 58% of those lapsed within 18 months, placing them inside the recovery window where return rates are highest.
32.7% disengagement rate. 122 patients classified as Seen Not Treated, 81% returning to this same provider in planned care settings. Viral load ordering rate: 44.7%. Regimen mix is clinically complex — only 68% on modern single-tablet regimens, with 19.6% on multi-pill combinations — suggesting a clinically complex, treatment-experienced population. Lapse pattern: 53% sudden stops, 21% gradual drift. Among patients who do return, 80% restart on the same regimen. The prescriber is actively monitoring patients whose ART prescriptions have lapsed — the intervention is a conversation, not a referral.
The full analysis profiles 100 prescribers and 50 accounts with behavioral summaries, lapse pattern breakdowns, and regimen-level disengagement rates — available to walk through.
Methodology
Open and closed medical + pharmacy claims on 330M+ lives (Health Verity), supplemented with MMIT formulary data and provider taxonomy via NPPES. Cohort: B20 diagnosis + 2 or more oral ART pharmacy fills in 2022, tracked through March 2025. Disengagement: no oral ART fill after September 2024. "Seen Not Treated": B20-coded medical visit (Jan 2024–Mar 2025) with no ART fill in prior 180 days. Injectable migration identified via HCPCS procedure codes.
Sensitivity Results
| Challenge | Question | What We Found |
|---|---|---|
| Medicaid coverage loss | Did patients just lose insurance, not stop treatment? | The phenomenon existed at a 5.6% rate before Medicaid disruptions began — roughly 60% of what we see is not coverage-related⁷ |
| Invisible dispensing | Could patients be getting medication through channels claims can't see (340B, ADAP)? | Patients whose last fill was at an identified safety-net pharmacy actually had higher retention (73% vs. 65%) — the opposite of what an artifact would show⁸ |
| Data quality | Could gaps in the data be creating false positives? | 99.3% of prescription records have valid supply duration; 94% are standard 30-day fills |
| Brand-specific effect | Is this a problem with one medication, not the market? | Disengagement rates span only 3.7 percentage points across 11 medications from all three manufacturers when measured over the same time period⁹ |
| Diagnosis coding | Are HIV visit codes just automatically carried from old records, not real visits? | 60%+ of these visits were with internists, family doctors, or nurse practitioners — the providers who manage HIV¹⁰ |
| Missed medications | Are patients taking HIV drugs we didn't account for? | ~1,300 patients were on unmapped generic formulations — roughly 1% of the disengaged population |
| The tightest test | What's the finding when you strip away every possible alternative explanation? | 3,478 patients whose own doctor ordered HIV-specific bloodwork at a recent visit with no treatment filled |
Limitations
340B in-house dispensing, ADAP direct drug distribution, and cash-pay channels are invisible in commercial claims; an estimated 10–20% of the "Seen Not Treated" population may be receiving ART through these channels. The 340B test used safety-net pharmacy taxonomy as a proxy — a direct overlay of the HRSA 340B registry, Ryan White clinic listings, and contract pharmacy arrangements would further refine this estimate. Observational design — causation cannot be inferred. B20 as a secondary diagnosis may represent carry-forward coding; the same-provider and lab-confirmed subsets control for this.
8 FQHC-taxonomy last-fill patients showed higher retention than standard retail/specialty, directionally inconsistent with 340B artifact. Contract pharmacy arrangements remain a blind spot.
9 Duration-matched: patients active H1 2021, retention at H1 2023. Eliminates vintage bias from different approval dates.
10 Among B20 visits for disengaged patients (Jan 2024–Mar 2025): Internal Medicine 40%, NPs 11%, Family Medicine 10%. Lab/radiology specialties consistent with B20 as secondary diagnosis.