Polycythemia Vera Prevalence to Near 100K by 2030 as Symptom Burden Grows

The number of Americans living with polycythemia vera (PV) is on track to approach 100,000 by the end of the decade, and new qualitative research presented alongside prevalence data at the 2026 American Society of Clinical Oncology (ASCO) Annual Meeting makes clear these patients are carrying a symptom burden that extends well beyond the lab values clinicians typically track.^1,2 Together, these 2 abstracts offer a more complete picture of PV’s expanding footprint: a growing population contending with a myeloproliferative disease that remains undercharacterized both epidemiologically and from the patient’s perspective.

What Do the Prevalence Data Reveal?¹

In a US Surveillance, Epidemiology, and End Results (SEER)–based analysis, investigators used a modified life table approach to generate US PV prevalence projections for 2025 through 2030, drawing on age-specific incidence rates spanning 2001 to 2022; they used the International Classification of Diseases for Oncology, Third Edition histology code for PV of 9950/3. A key methodological contribution was the application of an age-specific delay-adjustment correction factor, which accounted for the lag between diagnosis and SEER reporting, which the researchers estimated at 18% to 20% across age groups.

The average age-adjusted incidence rate (IR) for 2018 to 2022 was 1.4 per 100,000 person-years (PYs). After delay adjustment, that figure rose to 1.7 per 100,000 PYs. Age-specific IRs climbed sharply with advancing age, from 0.1 per 100,000 in adults younger than 30 years to 8.6 per 100,000 in individuals 80 years and older after delay adjustment, a pattern consistent with PV’s profile as a disease predominantly diagnosed in older adults.^3-5 The modeled prevalence rate for 2025 stands at 25.6 per 100,000, corresponding to 88,943 patients currently living with PV in the US. Projections show that figure rising to 27.3 per 100,000 by 2030, or from 90,522 cases to 97,011 cases.

The authors note that joinpoint analyses found no statistically significant trend in IR over the full study window, suggesting the upward trajectory may be driven by survival improvements and demographic aging rather than any meaningful increase in new diagnoses.

What Do Patients Say the Disease Actually Feels Like?²

In what its authors describe as “the first observational qualitative interview study focused on the PV patient experience,” 20 adults with a documented PV diagnosis requiring at least 3 phlebotomies per year participated in one-on-one 90-minute semistructured phone interviews that used (1) concept elicitation, in which patients described their symptoms and life impacts in their own words, and (2) cognitive debriefing, in which patients were evaluated on the clarity and relevance of patient-reported outcome (PRO) instruments for PV.

Concept elicitation surfaced 44 distinct signs and symptoms and 33 life impacts. Of these, 15 signs/symptoms and 21 impacts met the study’s threshold for salience, defined as reported by at least 6 patients with a mean bother or impact score of 5 or higher on a 10-point scale. Fatigue, itchiness, and low energy ranked among the most salient symptoms. Sleep disturbances, difficulties with self-care or activities of daily living, and work limitations were the most frequently cited impacts.

Those findings align with prior research showing that PV symptoms frequently persist despite apparent blood count control, a disconnect that complicates the assumption that hematocrit management alone is sufficient to protect patients’ quality of life.^6,7

The cognitive debriefing phase yielded a practical near-term application. It validated 2 specific PRO instruments—the PROMIS Fatigue Short Form-8a and the Myelofibrosis Symptom Assessment Form version 4.0—as appropriate for capturing PV symptom burden. Patients found both instruments clear, understandable, and largely reflective of their disease experience, with the PROMIS Fatigue SF-8a specifically confirmed to capture the most salient concept identified: fatigue.

Those content validity findings directly informed the patient-reported end points selected for the phase 3 VERIFY trial (NCT05210790), the authors wrote, which is evaluating rusfertide added to standard of care vs placebo in patients with PV requiring frequent phlebotomy.⁸

References

1. Vachhani PJ, Martel SE, Sawicki CM, et al. Estimated prevalence of polycythemia vera in the United States (2025-2030): SEER analysis with modeled reporting delay. J Clin Oncol. 2026;44(suppl 16):abstr e18589. doi:10.1200/JCO.2026.44.16_suppl.e18589
2. Cella D, Pettit KM, Bankar A, et al. Symptoms and life impact of polycythemia vera (PV): Results from a qualitative patient interview study. J Clin Oncol. 2026;44(suppl 16):abstr e23259. doi:10.1200/JCO.2026.44.16_suppl.e23259
3. Polycythemia vera. Mayo Clinic. May 8, 2025. Accessed June 22, 2026. https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
4. Polycythemia vera (PV). MPN Research Foundation. Accessed June 22, 2026. https://www.mpnresearchfoundation.org/polycythemia-vera-pv
5. Polycythemia vera. Canadian Cancer Society. Reviewed September 2022. Accessed June 22, 2026. https://cancer.ca/en/cancer-information/cancer-types/leukemia/what-is-leukemia/myeloproliferative-neoplasms/polycythemia-vera
6. Inserro A. Polycythemia vera symptoms not linked to blood count control, study says. AJMC^®. August 2, 2019. Accessed June 22, 2026. https://www.ajmc.com/view/polycythemia-vera-symptoms-not-linked-to-blood-count-control-study-says
7. Shaw ML. Phlebotomy burden undermines consistent PV control. AJMC. June 11, 2026. Accessed June 22, 2026. https://www.ajmc.com/view/phlebotomy-burden-undermines-consistent-pv-control
8. A phase 3 study of rusfertide in patients with polycythemia vera (VERIFY). ClinicalTrials.gov. Updated August 7, 2025. Accessed June 22, 2026. https://clinicaltrials.gov/study/NCT05210790