Global Advisory Committee Identifies Priorities to Address Top Challenges in Lupus
Lupus experts from around the world and representatives of people with lupus pave a path forward for more accurate and timelier diagnosis, greater access to care, and improved treatment options.
A global advisory panel of lupus medical experts and people living with the disease met recently in Washington, DC to set bold new priorities in lupus drug development, clinical care and access to care. The meeting was an integral part of the ALPHA Project (Addressing Lupus Pillars for Health Advancement), a global initiative led by the Lupus Foundation of America to improve health outcomes in lupus.
"Lupus is a disease with a global presence and a global prevalence," said Dr. Ian Bruce, professor of Medicine at the University of Manchester in the United Kingdom, who was one of the international experts that serves on the ALPHA Project Global Advisory Committee (GAC). "When you think about problems relating to lupus, you have to think from a global perspective. We understand that the problems we see in lupus have relevance across the world, and not just in a single jurisdiction."
Leslie M. Hanrahan, Senior Vice President of Research for the Lupus Foundation of America (LFA), echoed Dr. Bruce's comments on the need for an international approach to address challenges in lupus. "We need to get everybody on the same page about the issues impacting care, treatment and access because research has shown they are the same globally. You need a third-party convener to bring the different groups together to solve problems. And we’re proud of our work to be the convener, to tackle tough issues in lupus, and bring stakeholders together to move mountains and secure results.”
GAC members also reviewed results from a global survey of people with lupus. Working through the World Lupus Federation, for which the LFA serves as Secretariat, more than 3,400 individuals with lupus from 83 countries provided input on what they see as their top priorities in lupus care and research.
“People with lupus are still in need of new safe and effective treatments, as managing medication side effects and lack of treatment options are top reported challenges,” said Karin Tse, Research Manager, Health Outcomes & Data Science for the LFA. “Access to care, particularly trouble paying for care, is also a top concern for people with lupus around the world.”
The survey also found that only a small portion of respondents have participated in lupus research, including clinical trials. Most participants noted they learned of these opportunities from their doctor. Tse said the top reason cited for not participating in research is their doctor not asking them to join. "Education and awareness are key factors for research participation, which includes addressing concerns about the risk of participation."
The GAC discussion focused on the top issues that fell within the three domains identified and published as part of the ALPHA Project Phase I completed in 2019 – lupus drug development, clinical care and access to care. Addressing lack of user-friendly and sensitive outcome measures is an example of an issue discussed. Members of the GAC then prioritized two or three issues within each domain that would provide actionable solutions to address these issues and stimulate progress.
“By getting the group together, we were able to get a broad consensus and a broad level of prioritization around several vital issues,” said Dr. Bruce.
Sydney Evans, a patient representative from Maryland, noted that while researchers and doctors see the data, the research and the science behind lupus, it was essential that perspectives from people living with lupus be included to assure solutions address patient needs. “Being able to bring in the patient voice really helps balance it all out and really brings it all back together, to make sure that our key issues and things that we're dealing with day-to-day aren't overlooked.”
Leslie Hanrahan noted that the purpose of this meeting was to identify actions that address the challenges in lupus. The next step will be to determine how to implement the priorities throughout the world. "We will go back, spend time with the meeting's outcome, then send it back out to the GAC members asking them to re-rank the priorities in terms of what is feasible. From there, we will create an action plan to determine just how we will improve outcomes for people living with this very challenging and life-altering disease.”