I’m Jim’s bed. Notice the untidy sheets and misshapen pillows I have from Jim’s constant naps on me every day. Jim’s ongoing fatigue has been a daily struggle for him, even with his current C5i treatment. In fact, many patients on C5i therapy still experience ongoing fatigue.^1,‡

Based on a patient survey (N=122), many patients treated with a C5i remained anemic and were unable to achieve Hb normalization, despite displaying Hb stabilization.^1,2

Ongoing fatigue¹

Possible limitations of the survey included¹:

• A small sample size
• Selection bias from patients dissatisfied with their current C5i therapy
• Subjectivity of patient-reported outcomes
• Convenience sampling methodology rendering results not generalizable to total population

C5i=complement component 5 inhibitor.

^‡US patient-reported data from a survey investigating the symptom burden of PNH in patients (N=122) currently treated with C5 inhibitors eculizumab or ravulizumab to determine possible unmet needs within PNH treatment. Study results were presented at the 2021 International Society for Pharmacoeconomics and Outcomes Research Europe (ISPOR-EU) Virtual Conference.¹

References: 1. Dingli D, Matos JE, Lehrhaupt K, et al. The burden of illness in patients with paroxysmal nocturnal hemoglobinuria receiving treatment with the C5-inhibitors eculizumab or ravulizumab: results from a US patient survey. Ann Hematol. 2022;101(2):251-263. 2. Risitano AM, Marotta S, Ricci P, et al. Anti-complement treatment for paroxysmal nocturnal hemoglobinuria: time for proximal complement inhibition? A position paper from the SAAWP of the EBMT. Front Immunol. 2019;10:1157.

I’m Jim’s bike. I’ve been over here gathering dust because it’s been so long since Jim has felt well enough to take me out for a ride. Jim’s persistently low Hb levels have made it hard for him to perform physical activities, even with his current C5i treatment.

Based on a patient survey (N=122), many patients treated with a C5i remained anemic and were unable to achieve Hb normalization, despite displaying Hb stabilization.^1,2,‡

Of the 114 patients who provided Hb levels¹:

Hb levels <10.5 g/dL

Possible limitations of the survey included¹:

• A small sample size
• Selection bias from patients dissatisfied with their current C5i therapy
• Subjectivity of patient-reported outcomes
• Convenience sampling methodology rendering results not generalizable to total population

C5i=complement component 5 inhibitor.

^‡US patient-reported data from a survey investigating the symptom burden of PNH in patients (N=122) currently treated with C5 inhibitors eculizumab or ravulizumab to determine possible unmet needs within PNH treatment. Study results were presented at the 2021 International Society for Pharmacoeconomics and Outcomes Research Europe (ISPOR-EU) Virtual Conference.¹

References: 1. Dingli D, Matos JE, Lehrhaupt K, et al. The burden of illness in patients with paroxysmal nocturnal hemoglobinuria receiving treatment with the C5-inhibitors eculizumab or ravulizumab: results from a US patient survey. Ann Hematol. 2022;101(2):251-263. 2. Risitano AM, Marotta S, Ricci P, et al. Anti-complement treatment for paroxysmal nocturnal hemoglobinuria: time for proximal complement inhibition? A position paper from the SAAWP of the EBMT. Front Immunol. 2019;10:1157.

I’m Jim’s neglected phone. Lately Jim’s persistent fatigue has depleted his energy and motivation to engage with others, disrupting his work and the ability to perform everyday activities. These disruptive effects can be^1,‡:

Possible limitations of the survey included¹:

• A small sample size
• Selection bias from patients dissatisfied with their current C5i therapy
• Subjectivity of patient-reported outcomes
• Convenience sampling methodology rendering results not generalizable to total population

C5i=complement component 5 inhibitor.

^‡US patient-reported data from a survey investigating the symptom burden of PNH in patients (N=122) currently treated with C5 inhibitors eculizumab or ravulizumab to determine possible unmet needs within PNH treatment. Study results were presented at the 2021 International Society for Pharmacoeconomics and Outcomes Research Europe (ISPOR-EU) Virtual Conference.¹

Reference: 1. Dingli D, Matos JE, Lehrhaupt K, et al. The burden of illness in patients with paroxysmal nocturnal hemoglobinuria receiving treatment with the C5-inhibitors eculizumab or ravulizumab: results from a US patient survey. Ann Hematol. 2022;101(2):251-263.