Lupus Foundation of America: Patients remain 'at the heart of everything we do'
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A complex autoimmune disease like lupus requires multi-pronged, multifactorial approaches for both individual patient management and for broader research and advocacy initiatives. It is difficult to diagnose, treat, and study in clinical trials.
Only an organization with a clear mission and significant funding capacity could begin to meet these challenges. The Lupus Foundation of America is such an organization.
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“Since our founding more than 40 years ago, we have always employed a comprehensive approach toward ending the brutal impact of lupus,” Stevan W. Gibson, president and CEO of the Lupus Foundation of America, told Healio Rheumatology in an interview, adding that research is at the core of the group’s mission.
“Everything we do is driven by our mission to improve the quality of life for people with lupus through programs of research, education, and advocacy,” Gibson said. “Helping people who are impacted by this disease is at the heart of everything we do.”
Since 1977, the Lupus Foundation of America has funded more than 400 lupus researchers at more than 100 medical institutions. “Many of these researchers have gone on to attract millions of dollars from other public and private sources,” Gibson said. “Their landmark contributions to a better understanding of lupus have given people living with the disease an increased lifespan and improved the quality of life.”
Filling the Research Pipeline
The Lupus Foundation established the first national nonprofit research program dedicated exclusively to lupus at a time when there were few opportunities to fund lupus studies. “We were early supporters of many of today’s lupus thought leaders, and the studies we funded have contributed to every lupus research breakthrough achieved during the past 40 years,” Gibson said.
There are three primary objectives of the research program, according to Gibson: Identify the cause of lupus, discover better ways to control symptoms and find pathways to better treatments and a cure. “To those ends, we bring together top lupus experts in every arena to determine what is holding us back in lupus research and implement strategies to accelerate meaningful advancements in the field,” he said.
Gibson highlighted the Addressing Lupus Pillars for Health Advancement (ALPHA) Project as one of the landmark research initiatives of the organization. The goal of the first phase of the ALPHA Project is to identify the most significant challenges facing the lupus field and provide a global consensus on these issues. Other research programs are investigating the potential use of stem cell research in the disease, and the parameters of lupus in children and teens.
The Lupus Foundation’s research initiatives have borne fruit in the diagnostic arena, and have led to the discovery of the Avise CTD (Exagen) diagnostic assay.
Fostering Connections
An important mission of the Lupus Foundation is to provide sound information for doctors and patients. The organization’s website lupus.org, is a good place to start, along with the National Resource Center for Lupus, the National Health Educator Network, the National Network of regional offices, chapters and support groups. These groups provide information, conduct education programs, and coordinate outreach programs for people affected by lupus.
For clinicians and patients seeking more science-based information, Lupus Science & Medicine, a global, peer reviewed, open access online journal, is intended to help physicians stay current on developments in basic, clinical, translational and epidemiological research, according to Gibson.
“Our online community, LupusConnect, lets people with lupus engage with others like them to share experiences, find emotional support and discuss ways to cope with the daily challenges of the disease,” Gibson added.
The Lupus Foundation also aims to inform individuals outside of the patient and physician communities. “Inside Lupus Research is our consumer-facing news bureau that summarizes important reports from all the leading lupus research publications,” Gibson said.
Advocacy and Unity
The Lupus Foundation of America advocacy program runs year-round, having successfully advocated for more than $615 million for lupus research in the last 5 years alone. “These efforts are supported by our national network of lupus advocates, representing every state, who are a strong voice for people affected by lupus,” Gibson said.
The yearly National Lupus Advocacy Summit is attended by more than 350 people, including patients, physician-scientists and representatives of other nonprofit organizations with an interest in lupus. This past year, due to the COVID-19 pandemic, the Lupus Foundation quickly transformed the Summit to be virtual, successfully hosting thousands of online advocates for this critical advocacy event.
“Together, with thousands of additional ‘virtual advocates’ from around the nation, they deliver a powerful message to elected officials and government leaders,” Gibson said. “This helps support more funding for lupus research and programs that can improve the lives of those impacted by the disease.”
The Medicare Access for Patients Rx Coalition at the heart of the Lupus Foundation’s goal of providing access to medications for all patients with lupus. There are more than 60 national advocacy and health professional groups involved in this coalition.
“We also work with federal agencies, such as the CDC and FDA, to understand the impact of lupus on different populations at greatest risk for lupus, overcome regulatory hurdles to lupus drug development, and incorporate patient perspectives in the drug development and approval process,” Gibson said. “Through these efforts, we can get new treatments to people with lupus as soon as possible.”
Significant Achievements
The first and only national childhood lupus research program was established by the Lupus Foundation. “This is important because in children, lupus tends to be more aggressive and severe than it is in adults,” Gibson said. “We recognized these challenges and in 2006 established the Michael Jon Barlin Pediatric Lupus Research Program. This program supports discoveries for lupus kidney disease, neuropsychiatric lupus, health-related quality of life, and development of drugs specifically for children and teens with lupus.”
On the advocacy front, the Lupus Foundation have secured more than $72 million to establish and fund the National Lupus Patient Registries at the CDC, which has provided insight into the impact of lupus on populations at greatest risk for developing lupus. “This includes women of color — African American, Hispanic, Asian and Native American women,” Gibson said. “We also successfully advocated to establish a research program at the Department of Defense dedicated to lupus, which research indicates may be more prevalent in those who have served in the military.”
The Lupus Research Program at the DoD has provided $25 million in funding to research studies since it was initiated in 2017, while the DoD has provided nearly $47 million overall to support lupus investigators and their studies.
A 2009 report by the Lewin Group was the first comprehensive assessment of barriers to drug development in lupus, according to Gibson. “We then began implementing the report’s recommendations,” he said.
Those efforts include the establishment of LFA Professional Online Instrument Training, LFA POINT, an online training portal for potential clinical investigators; LFA-REAL, a tool currently undergoing evaluation that can provide feedback from physicians and patients to make sure disease management goals are being met; and LFA-CDAI, which is a data synthesis tool.
“We also published a white paper, Lupus Community Panel Proposals for Optimizing Clinical Trials: 2018, developed by leaders in clinical research for lupus that provides consensus recommendations and actionable proposals for improving lupus treatment trials,” Gibson said. “The paper advances persuasive evidence for the FDA to consider in support of new approaches.”
In addition, The Foundation has worked with the NIH/NIAMS to develop a guidebook for nurses and other health care professionals.
Looking Ahead
Another key component of the Lupus Foundation is to make sure the next generation of lupus clinicians and researchers is robust and vibrant. Some of the grants and awards given by the Lupus Foundation include the Gina M. Finzi Memorial Student Summer Fellowship Program, the Gary S. Gilkeson Career Development Award, the Evelyn V. Hess Award, and the Mary Betty Stevens Young Investigator Prize, which are all coveted achievements for investigators in their early careers.
“As we move forward, we are focused on achieving three disease-specific outcomes: Reduce time to diagnosis, ensure people with lupus have an arsenal of safe and effective treatments, and expand direct services and increase access to treatment,” Gibson said. “All of our research, education and advocacy initiatives revolve around meeting these three critical strategic goals.”
For more information:
Stevan W. Gibson can be reached at 2121 K St. NW, Suite 200, Washington, D.C. 20037; email: brown@lupus.org.
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