Program areas at Lupus Foundation of America
Public information and education: the Foundation executes ongoing efforts to increase public awareness and understanding of Lupus and its health consequences as a tool to improve early diagnosis and treatment of the disease. Ongoing efforts includes public awareness campaigns, media relations, online and social marketing, and outreach efforts to build and enhance sustainable corporate and community partnerships. Life as we know it changed dramatically this year due to the onset of the coronavirus (covid-19) pandemic. It caused questions, concerns and anxiety for everyone which were amplified for all those living with Lupus who are often more susceptible to infections like covid-19. The Lupus Foundation of America immediately set up a central hub for covid-19 resources in english and spanish on our national resource center on Lupus, which has been viewed more than 380k times. In total, we now have more than 300 pages of content related to coronavirus and the hydroxychloroquine (hcq) shortage.we also leveraged social media to share the latest updates on covid-19 by creating a series of video interviews with medical experts and members of the Lupus Foundation of America team. More than 160k followers shared our expert interviews further expanding our reach of critical information. Our coverage of the latest covid-19 developments continue, including the importance of the flu shot during this time, going back to work or school, and insights on a potential covid-19 vaccine.throughout this past year, the Lupus Foundation of America (Foundation) continued to expand its reach through education programs (turned virtual due to covid-19), social media platforms and the Foundation's websites, engaging celebrities, and promoting national awareness campaigns. Key corporate partnerships helped distribute brochures about Lupus to physician offices and garner 12.5 million exposures of key time to diagnosis messages. Trained ambassadors helped expand our reach and our impact by raising awareness and educating their communities about Lupus and the work of the Lupus Foundation of America. The Foundation remains the number one online source for lupus-related information, with an audience of 7 million annual visits to its website properties, and more than 350,000 followers through its social media properties. We created a series of social media campaigns to bring attention to health disparities and highlight resources available to address the unique needs of different audiences impacted by Lupus. These campaigns incorporated videos to share Lupus warrior voices and those of our experts. In total all of these campaigns generated more than one million impressions across all channels.during Lupus awareness month in may, we made Lupus visible with 4.5 million impressions, more than 182k views of our videos and a 9% increase in traffic to our Lupus awareness month homepage.this year we concluded a five-year cooperative agreement with the us centers for disease control and prevention (cdc) which supported among other things, working with family physicians to improve the time to an accurate Lupus diagnosis (see program 5), raising awareness of Lupus among young black and latina women, and the development of the national resource center on Lupus, which has been visited more than 18 million times since its launch in 2017, reaching people in every state. Some key accomplishments this year include:- be fierce.take control. This digital-based campaign seeks to reach young women at greatest risk for Lupus to recognize the signs of Lupus and to take action if they are experiencing them (with the ultimate goal to reduce the time receiving a Lupus diagnosis). Our efforts this year resulted in more than 129 million impressions and 94,000, visits to our campaign website to learn more.- we launched the new educational, what is Lupus video, that provides an engaging explanation of what Lupus is, its impact and the difficulty in diagnosing, treating and living with this complex and unpredictable disease.- secured more than more than 90 national and local media stories highlighting the hydroxychloroquine shortage and its impact on people with Lupus. - launched take charge 2.0, a 12-week email series geared towards guiding newly-diagnosed people with Lupus with knowledge and skills to help manage their Lupus symptoms, which has a total of nearly 7,000 subscribers.- launched the pilot of an online self-care program. User experience is being gathered so further enhancements can be made prior to a broad launch in 2021.
Research: our national research program seeks to find solutions to problems that for decades have stalled progress in Lupus research, Lupus treatment development, patient care and treatment access. We aggressively pursued strategies to increase federal, state and industry support for research on Lupus, facilitated strategic collaborations, led global collaborations to drive consensus, and provided direct financial support to researchers through the Foundation's peer reviewed research grant programs.through our direct research funding support and various research initiatives, we invested more than $1.5 million into research through peer-reviewed research programs, direct awards, and lfa research partnerships. Furthermore through our advocacy efforts, the Foundation worked with congress to secure more than $20 million in funding specifically to advance Lupus research and education programs, in addition to securing a $1.25 billion increase in funding for the national institutes of health, the largest public funder of Lupus research in the world. Over the years we have led initiatives to overcome barriers to the development and approval of new, effective and tolerable treatments for people with Lupus. This past year, the Foundation:- launched, ray: research accelerated by you, a Lupus data platform where people with Lupus and caregivers share anonymous information about their Lupus experience to help researchers accelerate the development of new treatments and improve disease outcomes.- reached the first-ever global consensus on the barriers to Lupus treatment and care as part of the Foundation's addressing Lupus pillars for health advancement (alpha) project. The alpha project was launched in 2018 as a global, multi-phase, consensus-driven initiative seeking to identify and prioritize top urgent and unmet issues in Lupus drug development, clinical care, access and value of care. The project reached a significant milestone this year with the publication of the global consensus on the barriers to drug development which received nearly 4,000 abstract and publication downloads and media coverage in at least 6 top trade media publications.- the lfa signed a 6th year amendment with fnih and is on the amp steering committee which is in the process of determining what the next phase of amp 2.0 will look like. The Foundation advocates for more focus on Lupus research and expanding the scope to not only Lupus nephritis, but other areas such as neuropsychiatric Lupus (npsle).- continued to publish papers from important and pivotal basic, clinical, translational and epidemiological studies of all aspects of Lupus and related diseases in our peer reviewed, open access journal, the first of its kind in Lupus, Lupus science & medicine. The journal provides a barrier-free forum for publication of ground-breaking studies in Lupus. It has been accepted for an impact factor, has begun podcasts, and had the most submissions of any year in 2020. - continued multi-year efforts which explore mesenchymal stem cells as a potential treatment for people with the disease. All clinical sites are currently enrolling participants and the study is expected to finish on time according to the timeline developed in cooperation with study partner the national institute for allergy and infectious diseases (niaid).- helped to address the ongoing decline in scientific momentum and loss of current and future Lupus investigators caused by a decline in federal support for research through our student fellowship and career development grant mechanisms.- provided new funding to address issues critically important to people with Lupus. This year, three of our 10 new career development award grantees are focusing their studies on lupus-related kidney disease (Lupus nephritis), an incredibly important area of Lupus research. As well, the Foundation has been working to build and solidify key partnerships with organizations that play a central role to the advancement of the science of Lupus. This past year, we expanded and launched new international partnerships to bring the Lupus community closer together in this global fight to end Lupus. Key 2020 partnerships include:- continue to work with the childhood arthritis and rheumatology research alliance (carra) is the first of its kind to characterize specific research questions, barriers and facilitators to research potential approaches for addressing the top identified issues. - the systemic Lupus erythematosus collaborating clinics (slicc), the premier body of Lupus experts from the us and around the globe, to fund a multi-year effort which updates the slicc damage index, one of the only outcomes measures in Lupus which has been accepted by the fda for use in clinical trials. The new index will include key learnings since development. It will also include the disease and impact of damage on children so that it may be used in pediatric trials in the future.- a first-ever partnership with Lupus canada to manage their grant mechanism, Lupus canada catalyst grant.the award provides funding for one year to canadian researchers at any stage in their career.- the covid-19 global rheumatology alliance's registry, which is an important international effort that collects de-identified information from clinicians and people with rheumatic diseases, such as Lupus. The information collected in the registry will help evaluate the risk of covid-19 and improve the way doctors manage rheumatic patients during this time.- the Foundation is working on an agreement to fully support the remainder of the phase ii trial, impact (improve pregnancy in aps with certolizumab therapy), for the next three years. Impact is the first trial of a biologic therapy to prevent adverse pregnancy outcomes in high-risk pregnancies in patients with aps with or without sle and was initially funded by niams. Funding from naims ended in july 2020, and the Foundation is currently working on an agreement which will fully support the remainder of the phase 2 trial over the next three yearsthrough our advocacy efforts in 2020, we have:- hosted the first ever digital advocacy summit, bringing together nearly 3,000 Lupus advocates to participate in two days of programming to educate them about the top issues in Lupus research and advocacy and join together in online meetings with members of congress.- secured an additional $9.5 million, a $1 million increase over fy20, to support the national Lupus patient registry program at the cdc in fy21, bringing total funding for the program to $81.8 million.- secured an additional $10 million in funding for the Lupus research program at the department of defense, for a total of nearly $57 million. - secured an additional $2,000,000 for the office of minority health's Lupus program to support a grant mechanism specifically focused on addressing the barriers to minority participation in clinical trials.- advocated for and secured a $1.25 billion increase for the national institutes of health, the largest public funder of Lupus research in the world. - protected access to hydroxychloroquine for people with Lupus amid the covid-19 pandemic by working with the food and drug administration, the white house coronavirus task force, congress, state officials, the manufacturers of hydroxychloroquine and others, including facilitating more than 138,000 messages to members of congress from Lupus advocates.- partnered with leading national patient organizations to form the protecting the immunocompromised collaborative to advocate state and federal policies that recognize the unique needs of people living with Lupus during the covid-19 pandemic, including policies related to vaccines, therapies, reopening, access to health care and other public health initiatives and guidelines.. - continued to elevate the patient voice is drug development and regulatory decision-making, providing the pupus patient perspective to congress and the fda as they move forward with the reauthorization of the prescription drug user fee act (pdufa) and patient focused drug development. - established a market access working group, consisting of people with Lupus and key opinion leaders, working to develop solutions that overcome barriers to care and ensure access, including through advocacy work related to insurance, cost and coverage, health disparities and value assessments/the institute for clinical and economic review (icer) among others., - continued to lead the maprx coalition, a group of more than 60 national patient advocacy organizations dedicated to protecting and strengthening the medicare part d prescription drug benefit.- built a network of nearly 40,000 grassroots advocates, from every state and all 435 congressional districts, dedicated to advancing Lupus public policy priorities.
Network support and services:the Foundation's national network is composed of chapters, regional offices, ambassadors and local support groups across the united states. The network supports those living with Lupus through our programs of education, research, support and advocacy all designed to improve the quality of life for those who suffer from the impact of lupus.the Foundation provides capacity-building services, strategic support, consultation and organizational development support and training to our network, as well as providing oversight and resources to the support group facilitators across the country who serve constituents. The covid-19 pandemic meant moving to virtual support groups, which allowed greater access to this important resource, at a time that was needed more than ever.in 2020, due to the impact of covid-19, our more than 74 in-person walk to end Lupus now events were moved to a national virtual event, which allowed for participation from participants from all 50 states to raise awareness and funds for local communities to improve the quality of life for people with lupus.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 continues to bring greater global attention and resources to the fight to end Lupus. This year we released results of a large-scale international survey in which nearly 7 in 10 participants responded that Lupus hampers their mobility. The survey included respondents from more than 70 countries, and reinforces the devastating and life-altering effects Lupus can cause to physical function for the estimated five million people who live with the disease across the globe.