Insights on the Lived Experience of Warm Autoimmune Hemolytic Anemia (wAIHA) from an Ongoing Patient Council
Authors: Güttinger Merel , Jones Karen A , Mangelaars Maartje , Panch Sandya R. , Michel Marc 
Published: December 2024

Introduction: Warm autoimmune hemolytic anemia (wAIHA) is a rare, life-threatening autoimmune disorder caused by autoantibodies that bind to and prematurely destroy red blood cells. Patients with wAIHA can experience acute worsening of anemia which can be a medical emergency and have an increased risk of thromboembolic events and premature death. There are currently no approved treatments for wAIHA. The initial symptoms, treatment response, and disease course can vary greatly between people living with wAIHA. While wAIHA has a clear impact on quality of life, few studies have characterized this impact in detail (Hill et al., 2021). A better understanding of patient experiences would enrich patient care and help with developing quality-of-life measures for wAIHA. In addition, regulatory agencies and European health technology assessment bodies are increasingly interested in patient experience data, especially patients with rare and/or chronic diseases (Bertelsen et al., 2024). To this end, we share qualitative findings from a patient council that includes experiences and insights from wAIHA patients related to their diagnosis, treatment, and the mental, emotional, and social impacts of the disease.
Methods: In January 2022, Johnson & Johnson (J&J) convened a wAIHA patient council to serve as an ongoing resource to better understand the patient perspective and inform the clinical development process at J&J. The results herein were generated from 4 council meetings. Participants were recruited via patient advocacy groups and comprised 8 individuals from the United States, the Netherlands, and Hungary. Participants self-reported a diagnosis with wAIHA and were diverse in terms of age (30's to 60's), sex (5 male, 3 female), race/ethnicity (6 White, 1 Black/African American, 1 Hispanic), disease course (between 1 and 21 years since diagnosis), and clinical trial experience (2 with, 6 without). Guided by a semi-structured interview format, patient discussions included six Key Areas: 1) Initial Symptoms; 2) The Road to Diagnosis; 3) Efficacy and Side-effects of Treatments; 4) Long-term Disease Management; 5) Mental, Emotional, and Social Impact; and 6) Relapse and Remission Cycles.
Results: Council members reported a variety of initial symptoms prior to their diagnosis of wAIHA that were largely consistent with prior literature, ranging from severe/acute to a slower/milder onset. The longest times to diagnosis reported by council members were 4 months, 7 months, and 2 years. One council member shared how they had to self-advocate to get the correct tests and diagnosis.
The participants' treatments tended to align with published consensus, although not all treatment options were available to all participants because of inter-country variability. Three council members underscored that often there is a disconnect between their hemoglobin levels and how they feel physically and that they had learned to adjust to functioning with very low hemoglobin levels while acknowledging that the disease still required treatment.
All participants experienced mental health impacts to varying degrees because of their diagnosis and this was often not fully recognized by their treating physicians. Four patients highlighted their fear of contracting infectious diseases like COVID-19 due to their treatment-induced immunocompromised state or because they worried it might trigger a relapse. All participants stressed the importance of having people in their life who understand what they are going through. Three participants who were in remission said they were afraid that their disease could come back at any time. Strategies for improving mental health included counseling, meditation, and connecting with other patients.
Conclusions: The diverse experiences and first-person accounts from the wAIHA patient council demonstrate the substantial burden of disease and may be informative for health care providers managing this condition. In particular, the council findings revealed a need for increased focus by providers on mental health impacts and expanding resources available to wAIHA patients. In addition, sharing these patient experiences may help other wAIHA patients better understand their disease and know that they are not alone in their journey. These accounts may also help guide clinical trial sponsors seeking to engage and involve patients in research aiming to advance novel treatment approaches.