Hemophilia in Focus: A Wake-Up Call for Pharma Innovation

What happens to patient behavior when the world slows down?

During the COVID-19 lockdown, one key question emerged for people living with hemophilia: did physical activity levels change - or simply pause?

Research published in Haemophilia set out to explore exactly that, focusing on people with moderate to severe hemophilia (PwMSH). Building on findings from the Irish Personalised Approach to the Treatment of Hemophilia (iPATH) study - which previously showed that this population is generally less physically active than the wider population - this follow up examined both self reported and objectively measured physical activity over time.

The study followed 30 participants, the majority living with severe hemophilia, with a median age of 47. Most were receiving prophylactic treatment at baseline and the average follow up period spanned nearly three years.

The results reveal a layered reality.

On one hand, accelerometer data showed no significant overall changes in physical activity levels across the study period. On the other, patient reported experiences told a different story: during lockdown, most participants said their activity levels either stayed the same or decreased.

Yet, there’s an interesting shift beneath the surface.

A significant proportion of participants reported increased awareness of their physical activity and a growing desire to become more active. More individuals also reached the World Health Organization’s recommended levels of physical activity over time.

So what does this tell us?

Even in highly constrained environments, mindset can evolve faster than behavior. Awareness can increase. Intent can strengthen. But translating that into consistent action remains a challenge - especially for patients navigating chronic conditions.

The study also points toward a broader opportunity: future research and care models must go beyond the individual patient. Incorporating the perspectives of families, caregivers, and multidisciplinary healthcare providers will be essential to truly support sustainable lifestyle changes.

As we mark World Hemophilia Day, this serves as a powerful reminder that progress in hemophilia care isn’t defined only by treatment advancements - but by how well we enable patients to live active, confident, and supported lives every day.

Source: Kennedy M, Roche S, McGowan M, et al. A cross-sectional follow-up study of physical activity in adults with moderate and severe haemophilia. Haemophilia. Published online March 13, 2023.