Survival Outcomes in People Living With HIV Who Experienced Progressive Multifocal Leukoencephalopathy Compared to the General Population

Author(s)

Katharina Buesch, MSc1, Elizabeth Sigworth, PhD2, Claire Louise Simons, PhD3, Iain Alex Kaan, MBA, DrPH4.
1Consultant, KJM Büsch Consulting GmbH, Zug, Switzerland, 2OPEN Health Group, Rotterdam, Netherlands, 3OPEN Health, Rotterdam, Netherlands, 4Aeolian Logic, Singapore, Singapore.
OBJECTIVES: Progressive multifocal leukoencephalopathy (PML) is a rare but fatal opportunistic infection. It is caused by reactivation of latent JC polyomavirus (JCV). The impact on survival of people living with HIV (PLWH) experiencing PML has previously been explored (Westerberg et al 2025). This current study aimed to describe survival outcomes of PLWH who experienced PML at some point after HIV diagnosis relative to the general population.
METHODS: Patient-level data were extracted from a recent systematic literature review of unique patients with PML, who previously were diagnosed with HIV. Individuals were included in the comparative analysis if they had a recorded age at HIV diagnosis. Time to death from age at HIV diagnosis was evaluated using the Kaplan-Meier method. Survival rates and corresponding 95% CI were reported. For the comparison to the general population, each person was assigned an individual life table based on their age at HIV diagnosis that reflected their survival probability per year, in the absence of HIV and PML.
RESULTS: Of the 35 individuals included in the analysis (26% female, mean age at HIV diagnosis 38 years, mean age at PML diagnosis 45 years), 16 (46%) died. At the last death event (34 years after HIV diagnosis, the survival rate was 23% (95% CI, 9%-56%). Starting at the age of HIV diagnosis, the survival rate was numerically lower in individuals experiencing HIV and PML relative to the general population. The median survival in the PML cohort after HIV diagnosis was 15 years (95% CI, 7-NR). At this time point survival in the general population was 93%. Median survival was not reached in the general population.
CONCLUSIONS: Reduced survival in people living with HIV and PML reflects a high disease burden. These results highlight the unmet need for effective disease-modifying treatments for PML.

Conference/Value in Health Info

2025-11, ISPOR Europe 2025, Glasgow, Scotland

Value in Health, Volume 28, Issue S2

Code

CO222

Topic

Clinical Outcomes

Topic Subcategory

Comparative Effectiveness or Efficacy

Disease

Infectious Disease (non-vaccine), Rare & Orphan Diseases

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