Spherix Global Insights Reveals Persistent High Disease Burden and Heavy Reliance on Pain Management in U.S. Sickle Cell Disease Despite Awareness of Disease-Modifying Therapies
New Patient Voice Dynamix™ research highlights that even with patients’ high awareness of options and active engagement in their care, systemic barriers and personal limitations from ongoing severe pain keep many patients from experiencing optimal disease control.
Exton, PA, Feb. 05, 2026 (GLOBE NEWSWIRE) -- New research from Spherix Global Insights underscores the profound and multifaceted burden faced by patients living with sickle cell disease (SCD), revealing a misalignment between how patients perceive and label disease severity and the level of clinical burden they experience. Findings from the recently published Patient Voice Dynamix™: Sickle Cell Disease (US) study show that while fewer than one-half of patients self-classify their disease as severe, the majority report frequent vaso-occlusive crises (VOCs), ongoing required transfusions, and a heavy reliance on pain management – all signals of significant, persistent unmet need in SCD care.
Based on research with 33 people living with SCD in the US conducted between October and November 2025, the study paints a sobering picture of daily life with the disease. More than half of patients report experiencing five or more VOCs annually, with an average of nearly ten crises per year. Hospitalizations are frequent and often prolonged, reinforcing that high levels of clinical burden are present even among patients who do not describe their disease as severe.
Chronic pain and fatigue emerge as central drivers of diminished quality of life among people with SCD. Patients describe pain as debilitating and overwhelming, often dominating daily life and limiting functional capacity. While fatigue is similarly pervasive, it is reported by patients as having a substantial impact on day-to-day functioning yet remains under-recognized by physicians. Beyond physical symptoms, SCD imposes significant emotional, social, and financial strain, with many patients reporting anxiety, depression, and substantial medical debt. Compounding this burden, the hereditary nature of SCD means many patients with SCD also serve as caregivers for affected family members, further intensifying both physical exhaustion and emotional stress.
Treatment patterns further underscore the central role of pain management in SCD. According to the study, over-the-counter analgesics and opioid medications are used more frequently than any disease-modifying therapy, including hydroxyurea. While oral therapies are generally preferred given their lower medication burden, dissatisfaction remains widespread, driven by concerns around limited efficacy, side effects, and cost – often resulting in treatment switching or discontinuation. More advanced options, such as gene therapy, are broadly recognized among patients but rarely pursued, with hesitation driven more by fear, uncertainty, and access barriers than lack of awareness.
Despite these challenges, patients report strong and trusted relationships with their hematologists, who remain the central drivers of SCD care. Nearly three-quarters of patients describe their hematologist as extremely helpful, and most feel actively involved in treatment decision-making. However, patients continue to express a desire for clearer, more actionable education, particularly around treatment options, lifestyle management, and financial navigation, to better support disease management. While awareness of patient foundations and advocacy organizations is high, patients report relying most heavily on immediate caregivers, reflecting the highly localized and personal support networks within the SCD community.
Collectively, these findings depict a SCD market characterized by high disease burden, sustained reliance on symptomatic pain control, and a persistent gap between treatment awareness and meaningful disease modification. As innovation in SCD continues to evolve, the Spherix analysis highlights the importance of patient-centered communication, realistic expectation-setting, and therapeutic solutions that meaningfully reduce pain, treatment burden, and disruption to daily life.
About Patient Voice Dynamix™
Patient Voice Dynamix™ is an independent, data-driven service designed to capture patients’ lived experiences as they navigate diagnosis, treatment, and long-term disease management. By integrating quantitative surveys, qualitative interviews, and validated patient-reported outcome measures, the service provides a comprehensive view of the burden of illness and unmet need from the patient perspective.
About Spherix Global Insights
Spherix is a leading independent market intelligence and advisory firm that delivers commercial value to the global life sciences industry, across the brand lifecycle.
The seasoned team of Spherix experts provides an unbiased and holistic view of the landscape within rapidly evolving specialty markets, including dermatology, gastroenterology, rheumatology, nephrology, neurology, ophthalmology, hematology, and oncology. Spherix clients stay ahead of the curve with the perspective of the extensive Spherix Physician Community.
As a trusted advisor and industry thought leader, Spherix’s unparalleled market insights and advisory services empower clients to make better decisions and unlock opportunities for growth.
To learn more about Spherix Global Insights, visit spherixglobalinsights.com or connect through LinkedIn.
For more details on Spherix’s primary market research reports and interactive dashboard offerings, visit or register here: https://clientportal.spherixglobalinsights.com
NOTICE: All company, brand or product names in this press release are trademarks of their respective holders. The findings and opinions expressed within are based on Spherix Global Insight’s analysis and do not imply a relationship with or endorsement of the companies or brands mentioned in this press release.
Sarah Hendry, Hematology/Oncology Franchise Head Spherix Global Insights 484-879-4284 sarah.hendry@spherixglobalinights.com
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