2015-2016 Fiscal Year Accomplishments
The Lupus Foundation of America is proud to report on our program service accomplishments for the fiscal year ending September 30, 2016.
Public Information and Education
This program aims to increase public awareness and understanding of lupus and its health consequences and to improve early diagnosis and treatment of the disease. The program includes public awareness campaigns, media relations, online and social marketing, and aggressive outreach efforts to corporate and community partners.
KNOW LUPUS Awareness Campaign
Throughout this past year, the Foundation continued to expand its reach through in-person programs, social media platforms, the Foundation’s websites, by engaging celebrities, and continuing its multi-media awareness campaign, KNOW LUPUS. This campaign by the end of FY2016 has educated a global audience of more than 735 million people about lupus and earned in excess of $27.8 million in donated media.
Dominant Online Presence
The Foundation remains the number one online source for lupus-related information, including an audience of nearly nine million annual visits to its website, lupus.org, and 200,000 Facebook fans and 28,000 Twitter followers.
Cooperative Agreement with the CDC
In 2015, the Foundation entered into a five-year cooperative agreement with the U.S. Centers for Disease Control and Prevention (CDC) to raise awareness of the signs and symptoms of lupus and to provide guidance on steps people should take if they suspect they might have lupus. During 2016, the Foundation began work on several new initiatives made possible by this funding agreement.
New Lupus Public Awareness Campaign
The Foundation produced a new digital lupus awareness campaign scheduled to launch in May 2017. The campaign, created in partnership with the American College of Rheumatology, seeks to reach young Latina and African American women, two groups believed to be most at-risk for the developing disease. The Foundation’s goal ultimately is to get young women treated earlier and reduce the long-term health consequences associated with lupus.
National Resource Center on Lupus
Also during 2016, the Foundation began work to create the National Resource Center on Lupus (NRCL), a new extensive online collection that will provide accurate, valid and up-to-date information on the most relevant topics related to lupus for people living with the disease, their families and caregivers, as well as provide resources for health professionals. The NRCL will launch during the first quarter of 2017.
Our National Research Program seeks to find solutions to problems that for decades have stalled progress in lupus research and hindered efforts to better understand the disease. We aggressively pursued strategies to increase federal, state and industry support for research on lupus, facilitated strategic collaborations, and provided direct financial support to researchers through the Foundation’s peer reviewed research grant programs.
Advancing Development of New Lupus Treatments
Since 2009, we have implemented initiatives to overcome barriers to the development and approval of new, effective and tolerable treatments for lupus. These initiatives include building private/public collaborations and securing consensus, creating tools, resources, and an online portal to train health professionals on disease activity instruments used in clinical studies. We also conducted feasibility research to better understand if it is possible to create a new, simplified instrument designed to assess disease activity in the clinic and in clinical trials.
Partnership with National Institutes of Health
We continued our partnership with the Foundation for the National Institutes of Health (FNIH) to support a 5-year initiative to develop new medicines for lupus and other diseases. Additionally, we continued efforts to use pooled clinical trial data (de-identified) provided by participating biopharma companies to improve the design of lupus clinical trials. New findings were published in a major rheumatology journal and presented at a major scientific meetings of medical organizations in the U.S. and abroad.
Open Access Medical Journal
Our peer reviewed, open access journal, Lupus Science & Medicine™, the first of its kind in lupus, continued to publish papers from important and pivotal basic, clinical, translational and epidemiological studies of all aspects of lupus and related diseases. The journal provides a barrier-free forum for publication of ground-breaking studies in lupus.
Peer Reviewed Medical Research Program
We provided new funding to address issues critically important to people with lupus, including expanded pediatric lupus nephritis biomarker research, adult stem cell research, and to address the ongoing loss in scientific momentum and loss of current and future lupus investigators caused by a decline in federal support for research.
Supporting Lupus Investigators
The Foundation also funded summer student fellowships and contributed to funding the fourth Lupus Insight Prize™ to support research that holds promise to generate additional advances in lupus. We also continued our Career Development Award program for fellows interested in a lupus research career.
Elevating Lupus on the Nation’s Healthcare Agenda
The Foundation also works to advance lupus research through its advocacy efforts on Capitol Hill. This past year, the Foundation:
- Successfully advocated to secure an additional $6 million to support the National Lupus Patient Registry program at the CDC, bringing total secured funding to $49.8 million.
- Lead efforts to establish a lupus-specific research program within the Congressional Directed Medical Research Program at the Department of Defense which, when enacted, will provide an additional $5 million in new funding to support the program, bringing the total lupus research funding secured through the DOD to more than $22 million.
- Secured an additional $2 million for The Lupus Initiative™ to support a funding mechanism specifically focused on addressing the barriers to minority participation in clinical trials. The Foundation submitted a proposal and received a one-year, $1M award in July 2016 to develop a model program designed to expand minority participation in clinical trials.
- Advocated for the enactment of the 21st Century Cures Act, which provides $4.8 billion in new funding for critical research at the National Institutes of Health and $500 million to the Food and Drug Administration to accelerate drug approvals.
Network Support and Services
The Foundation’s national network is composed of chapters, regional offices, community partners and local support groups located throughout the United States. The network supports programs designed to improve the quality of life for all people who suffer from the impact of lupus.
Building Capacity to Serve People with Lupus
The Foundation provided capacity-building services, strategic support, on-site consultation, and on-going organizational development support and training to our network, and specialized training for support group facilitators who serve several thousand people across the United States through approximately 200 support groups.
The Nation’s Largest Lupus Walk
Additionally, our Walk to End Lupus Now® events rallied nearly 70,000 individuals in 61 cities to raise awareness of lupus and funds for local communities to improve the quality of life for people with lupus.
World Lupus Federation
The Foundation also is leading the World Lupus Federation, a coalition of global lupus patient advocacy groups to advance lupus awareness and advocacy initiatives around the world that will help bring greater attention and resources to the fight to end lupus.
Professional Relations and Education
Our professional education programs translate research findings into public health recommendations for physicians, other healthcare professionals and their respective organizations.
Allied Health Professionals
In 2016 we focused our efforts on expanding partnerships with organizations that serve medical and other healthcare professionals such as the Rheumatology Nurses Society. In the past we had worked with them to develop a core curriculum on lupus for their more than 10,000 members. This year we continue to make progress with the partnership and are discussing additional potential partnership opportunities.
Working with Top Lupus Experts
Our multi-disciplinary Medical-Scientific Advisory Council (MSAC) continues to provide insight into newly published science that could have an impact on the field. We shared this information with the public and professional community via print research summaries, podcasts and videos.
Patient Education and Support
We provided education, support and other assistance to individuals with lupus, their families and caregivers.
Comprehensive Needs Assessment
In 2016 we initiated and completed a national patient, caregiver and health care professional needs assessment. More than 3,000 people with or touched by lupus and over 1,000 physicians/health care professionals were surveyed to identify the biggest needs in living with the disease, to identify how people want to receive this help and support, and in what format they would like delivery. In addition, we conducted the first-ever web based and interview based qualitative research with children and teens with lupus (parental consent received) to better understand how to support them in their journey.
The knowledge gained will help us to develop the very specific resources and opportunities needed for children and teens living with lupus. All research results are currently being prepared for publication in peer review journals, however the findings serve as a roadmap for future content and program development.
National Network of Health Educators
Our national health educator network responded to more than 4,539 telephone, email and handwritten inquiries in both English and Spanish, and conducted local, community based education programs that reached more than 500 individuals living with the disease. The health educator decrease in the number of inquiries compared to 2015 can be attributed to the increase in information, and organization of that information, on the lupus.org website. The Foundation’s site is being utilized more than ever as the first stop for people who are searching for basic lupus information and local resources.
Tools and Resources for People Affected by Lupus
The Foundation also conducted public education events across the country, including a workshop for children with lupus and their parents. We continue to generate original education content, including podcasts and research summaries, in a variety of formats and languages. In 2016 we completed development and design of our Caregiver Toolkit, a comprehensive resource for lupus caregivers of all ages. The Toolkit will be launched on the organization’s website in early 2017.