Global Survey Identifies Medication Side Effects and Lack of Effective Treatments as Top Challenges for People with Lupus
A survey of people with lupus and caregivers across the globe reveals that medication side effects – especially for those outside of the US– and lack of effective treatment are top challenges for people with lupus, including children. Findings also discovered that most respondents have never been asked by their physician to participate in a clinical trial, which was the top reason cited for not taking part in research.
Led by the Lupus Foundation of America, Tufts University School of Medicine Center for the Study of Drug Development and a Global Advisory Committee of 15 lupus experts, the survey was conducted through the Addressing Lupus Pillars for Health Advancement (ALPHA) Project. The Project provides the first truly global perspective on the state of the science, treatment and care for people with lupus. This global survey was conducted in an effort to ensure alignment between the patient community and expert community (researchers, clinicians, biopharmaceutical industry, and regulatory representatives) who had already taken part of a previous study on barriers to drug development, clinical care and access to care.
The 23-question survey was fielded across 83 countries and 95% of respondents were women. High out-of-pocket costs also ranked as a top challenge globally and across children and adults.
The ALPHA Project is a unique global consensus initiative that seeks to identify and prioritize the fundamental barriers or knowledge gaps that will allow providers, researchers and scientists to improve diagnosis, treatment and systems of care for people with lupus. Support from the global community for ALPHA has been invaluable and is sincerely appreciated. Learn more about the ALPHA Project.