When living with a lifelong condition like hemophilia, decisions about care and treatment are rarely simple. They are shaped by confidence in a treatment’s potential benefits and risks, along with personal experience, familiar routines, and how well it may fit into daily life.

Hemophilia is a rare genetic bleeding disorder that affects the body’s ability to form blood clots due to missing or deficient clotting proteins in the blood known as clotting factors. Over the past several decades, advances in care have transformed what it means to live with hemophilia, with treatment options available to help prevent and manage bleeds. As the landscape continues to evolve, patients and caregivers may have new opportunities to revisit their goals, consider whether their current approach meets their needs, and discuss compromises they may have come to accept over time.

To better understand these evolving perspectives, Pfizer conducted a global online survey through The Harris Poll among more than 1,000 people living with hemophilia and their caregivers across the United States, Japan, Brazil, and Germany between February and March 2026.* The survey explored the challenges of hemophilia as well as the priorities that shape treatment decisions and considerations for change.

Together, these findings tell a complex story. Many people reported being very satisfied or somewhat satisfied with their current treatment, while still experiencing ongoing burdens. At the same time, interest in newer treatment options is high, but it takes time to build familiarity and understanding of these emerging options. That gap is where trusted guidance from healthcare providers, patient advocacy groups, and community networks matters most.

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Lifestyle Challenges and the Unspoken Compromises of Hemophilia

Despite advances in care, many people living with hemophilia still face challenges, with survey findings pointing to ongoing physical and mental burdens. For example, more than half (55%) of patient respondents reported that they experience two or more bleeding episodes requiring treatment each year, and nearly half (48%) of all patients surveyed reported having poor venous access, which can happen after many years of IV therapy and can be especially problematic for older patients.1,2 Additionally, 83% of patient respondents agreed that spontaneity in their personal lives is difficult because they need to plan around their hemophilia, and 81% agreed that the disease has a significant impact on their social life.

The physical and emotional impact of living with hemophilia infographic

55% of patients reported 2+ bleeding episodes requiring treatment per year, and 48% reported having poor venous access. Furthermore, 83% say being spontaneous is hard because managing hemophilia requires a lot of planning, and 81% say hemophilia has a significant impact on their social life.*

Even with these challenges, most patients and caregivers surveyed say they are satisfied with their current treatment plan. However, the data suggest this reported satisfaction may mask underlying compromises. While 84% of respondents reported being satisfied overall with their current treatment, just 32% reported being “very satisfied,” and 52% were only “somewhat satisfied.” Similarly, only about one-third completely agreed that their treatment effectively controls their condition, enables a satisfactory quality of life, and is easy to administer, while around half of respondents “somewhat agreed” with these statements.

Reported levels of satisfaction with current hemophilia treatment plans infographic

Although 84% of respondents report being satisfied with their current treatment plan, only 32% report being “very satisfied” and 52% are “somewhat satisfied.” Additionally, only one-third completely agree that their treatment effectively controls their condition (33%), provides a satisfactory quality of life (32%), and is easy to administer (33%).*

This gap between overall satisfaction and optimal care, including both ongoing physical and mental burdens, demonstrates that many patients may have accepted ongoing burdens and limitations as simply a part of living with hemophilia.

What Matters Most When Considering Change

As treatment options continue to expand, understanding the priorities that matter most when considering a treatment change can help foster informed discussions and more personalized care. According to the survey, key priorities for both patients and caregivers when considering a change in therapy include improved efficacy, medical recommendation, real-world evidence, easier administration, predictability, and mental well-being.

Key priorities when considering a change in treatment infographic

When asked about respondents’ top priorities when considering a change in hemophilia therapy, 82% cited improved efficacy, 81% cited medical recommendation, 81% cited real-world evidence, 81% cited easier administration, 81% cited predictability, and 81% cited mental well-being.*

This indicates that changing therapy is a complex process shaped by both clinical benefits and shared decision-making.

Awareness and Understanding of Evolving Treatment Options

For those interested in treatment possibilities, the hemophilia treatment landscape continues to evolve, including the emergence of non-factor therapies with new mechanisms of action.

While more than 80% of patients reported feeling encouraged by the potential of newer therapies, such as subcutaneous non-factor therapies, opportunities remain to build understanding of these treatment options, particularly as access to information varies across geographic regions.