Pharmaceutical and Biotech Support of the Lupus Research Alliance – 2020
The Lupus Research Alliance’s vision is a world free of lupus – by finding ways to prevent, treat and one day cure this disease. We work diligently to forge appropriate relationships with members of the pharmaceutical and biotech industries that share our vision and are working on potential treatments for lupus. We seek opportunities to collaborate with these companies to raise general disease/health and symptom awareness of the various types and manifestations of lupus.
While we are encouraged by the recent approvals of an existing treatment and a new drug to treat lupus nephritis, the fact remains that there have been only two drugs approved in the last 60 years specifically to treat lupus and its associated kidney-related complication. * Therefore, it is important to us at the Lupus Research Alliance to do our part as a research/advocacy-focused nonprofit to help these companies succeed in their research and to keep the needs of the person with lupus at the forefront in the process of developing potential treatments for lupus.
We seek to have a positive impact on the fantastic work that doctors, research scientists, and clinicians at these companies are doing in lupus. We aim to help them better understand the disease itself as they consider how to develop a treatment and share the best research to take forward into lupus drug development. As an advocacy organization, our role also includes providing pharmaceutical companies with a clearer perspective of what people with lupus really live with on a daily basis and how that translates into what kinds of treatments to potentially develop. On the more complex scientific and clinical research issues regarding the best ways to conduct lupus research, we work together to find answers that will lead us collectively towards potential treatments for lupus and one day a cure.
We request that the companies with an interest in lupus financially support the work of the Lupus Research Alliance in these areas and also to actively engage with our organization and the lupus community to learn as much as they can about the latest science in lupus research. We ask companies to help support the Lupus Research Alliance to raise awareness about lupus.
In the interest of transparency, the grants and sponsorships that companies contribute to the Lupus Research Alliance** allow us to provide many of our very specific activities that surround the lupus research effort. The information below gives you a transparent snapshot of the funding we receive from the pharmaceutical and biotech industry and the events, conferences, projects, and activities they support at our request.
See below for a full detailed listing of funding support received in 2020 from pharmaceutical and biotech companies:
SCIENTIFIC MEETINGS
Lupus Therapeutics (LT) convened a virtual meeting in 2020 for members of its Lupus Clinical Investigators Network (LuCIN), to provide an opportunity to facilitate the discussion of novel clinical research initiatives to further enhance and advance the mission of Lupus Therapeutics in collaboration with industry.
Total pharmaceutical company funding for Scientific Meetings in 2020: $130,000.
See details below in Scientific Conference section
CORPORATE MEMBERSHIPS
The Lupus Research Alliance’s corporate membership programs are designed to provide opportunities for interaction between pharmaceutical companies, our senior staff, scientific advisors, and the lupus community on current research and advocacy issues in the lupus community.
Total pharmaceutical company funding through Corporate Memberships in 2020: $315,000
See details below in Corporate Membership section
LUPUS AWARENESS/EDUCATION/ADVOCACY
The pharmaceutical industry and other key players work with the Lupus Research Alliance in raising awareness and to assure that accurate information is provided about the disease both to those affected by lupus and the general public. Industry also helps to support our advocacy efforts, which bring the patient voice to our nation’s legislative policy makers and help to increase the amount of urgently needed public funding for lupus research.
Total pharmaceutical company funding for Lupus Awareness/Education/Advocacy in 2020: $375,450
See details below in lupus awareness/education/advocacy section
DIVERSITY AND HEALTH EQUITY
The Lupus Research Alliance continues to expand initiatives throughout the country, to increase lupus awareness and participation in clinical trials among people in the racial/ethnic groups disproportionately affected by lupus, including African Americans, Hispanics/Latinos, Asian Americans, and Native Americans.
Total pharmaceutical company funding for Diversity and Health Equity Initiatives in 2020: $300,000
See details below in Diversity and Health Equity section
SPECIAL EVENTS
The Lupus Research Alliance holds special events to increase lupus awareness and advocacy while raising funds for its lupus research programs. NOTE: Due to restrictions caused by the pandemic, many of LRA’s events were canceled or converted to virtual formats in 2020, as noted under details.
Total pharmaceutical company funding for Special Events in 2020: $20,000
See details below in Special Events section
WALK WITH US TO CURE LUPUS
The Walk with Us to Cure Lupus is Lupus Research Alliance’s signature national grassroots fundraising program to raise critical funds for lupus research and increase awareness of the disease.
Total pharmaceutical company funding for Walk with Us to Cure Lupus program in 2020: $315,000
See details below in Walk with us to Cure Lupus section
Thank you to all of the companies who provided funding in 2020
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*Belimumab (GSK’s Benlysta®) was first approved for systemic lupus erythematosus in 2011; and in December 2020 received FDA approval as the first-ever treatment indicated for lupus nephritis in adults. Voclosporin (Aurinia Pharmaceuticals’ Lupkynis™) was approved by the FDA on 1/25/2021 as the first oral treatment developed specifically for adults with active lupus nephritis (LN) in combination with standard of care.
**The Lupus Research Alliance has an affiliate called Lupus Therapeutics that is charged with innovative clinical research in lupus. Through Lupus Therapeutics’ Lupus Clinical Investigators Network (LuCIN), they provide specific scientific and clinical consulting and clinical trial start up and recruitment services in support of executing selected industry-sponsored clinical trials in lupus. Lupus Therapeutics offers these services to the pharmaceutical and biotech industries on a fee for services/contractual basis.
In 2020 Lupus Therapeutics collected $1,304,694 in gross revenues from its services offered to the industry to help offset the costs of running and operating the Lupus Clinical Investigator Network which is supported by the Lupus Research Alliance.
These fee for service contracts are not included/reflected in this report as they are not charitable contributions, sponsorships or grants.
Lupus Therapeutics’ 2020 LuCIN Investigators Meeting
Lupus Therapeutics (LT) convened a virtual meeting for members of the Lupus Clinical Investigators Network (LuCIN) on December 8, 2020 to provide an opportunity to engage within one forum LuCIN’s clinical investigators, study coordinators, other site personnel, and industry partners to reflect upon our current activities, accomplishments, and future plans.
The following companies contributed the amounts indicated for partial support of the virtual LuCIN Investigators Meeting in 2020::
Amgen $10,000
Aurinia Pharmaceuticals Inc. $20,000
DxTERITY $5,000
EMD Serono $10,000
Exagen, Inc.$20,000
GSK $20,000
Janssen Research & Development, LLC $20,000
Kezar Life Sciences $10,000
Eli Lilly and Company $10,000
Viela Bio $5,000
Membership in the Lupus Research Alliance’s Corporate Leadership Circle (CLC) provides an opportunity for companies to provide partial support for and receive regular updates on our current lupus research and advocacy programs, as well as offer input about the needs of industry in cases where we can work together to accelerate the progress of new treatments becoming available to people with lupus.
The following companies were members of the Lupus Research Alliance’s Corporate Leadership Circle through a contribution of $22,500 in 2020 (same for all companies):
AstraZeneca
Aurinia Pharmaceuticals Inc.
Biogen
Bristol Myers Squibb
EMD Serono
GSK
Janssen Research & Development, LLC
Eli Lilly and Company
Pfizer Inc.
UCB
Membership in the Lupus Industry Council (LIC) provides an opportunity for companies to work collaboratively in a pre-competitive space to address common impediments and accelerate shared research goals related to the development of new and effective therapies for people with lupus.
The following companies were members of the Lupus Research Alliance’s Lupus Industry Council through a contribution of $7,500 in 2020 (same for all companies):
Abbvie
Amgen
AstraZeneca
Aurinia Pharmaceuticals Inc.
Biogen
Bristol Myers Squibb
EMD Serono
GSK
Janssen Research & Development, LLC
Eli Lilly and Company
Pfizer Inc.
UCB
2020 Lupus Research Alliance National Lupus Advocacy Meeting and Hill Day
Advocate for Lupus Research Day took place March 9-10 in an online format due to concerns developing around the spread of the novel coronavirus. LRA’s first
virtual advocacy event included a virtual training on March 9, and outreach to over 130 legislators in 30 states through email, phone calls, social media, and delivered packets delivered on March 10.
The following companies contributed the amounts indicated for partial support of the Lupus Research Alliance’s virtual National Lupus Advocacy Meeting and Hill Day in 2020:
AstraZeneca $25,000
Aurinia Pharmaceuticals Inc. $25,000
GSK $35,000
Janssen Research & Development, LLC $25,000
Patient Advocates for Lupus Studies (PALS)
Patient Advocates for Lupus Studies (PALS) is a peer-to-peer patient communication and education initiative being developed in collaboration with the Lupus Research Alliance-sponsored Lupus Clinical Investigators’ Network (LuCIN).
The main goal of PALS is to increase awareness among people with lupus regarding the importance of clinical trials to develop new treatments; and ultimately, to help increase participation in lupus clinical trials especially in minority communities most affected by the disease.
The following companies contributed the amounts indicated for partial support of the Patient Advocates for Lupus Studies (PALS) program in 2020:
Genentech $30,000
Learn from Lupus
To underscore the complexity of lupus and the hyper-reactive immune response in face of COVID-19, the LRA launched a brand new Learn from Lupus public education campaign in 2020, which was delivered through virtual, multi-media components that included a series of webinars, videos, and other online content.
The following companies contributed the amounts indicated for partial support of the Learn from Lupus public education campaign in 2020:
AstraZeneca $50,000
Aurinia Pharmaceuticals Inc. $35,000
Bristol Myers Squibb Foundation – COVID-19 GRANT FUND $20,000
EMD Serono $10,000
GSK $50,000
Janssen Research & Development, LLC $50,000
Other Lupus Awareness Activities
The following companies contributed funds for partial support of other Lupus Awareness/Education/Advocacy Activities in 2020 as noted below:
Aurinia Pharmaceuticals Inc.$15,000 (Advancing Lupus Care Through Research Conferences)
Bristol Myers Squibb $5,000 (Study Protocol Review)
AstraZeneca $450 (LRA Participation in Patient Advocacy HACKATHON)
Lupus Multi-Cultural Engagement Initiatives
The focus of LRA’s Lupus Multi-Cultural Engagement Initiatives, designed and implemented through our partnership with the National Minority Quality Forum, is to increase outreach to people in the racial/ethnic groups disproportionately affected by lupus — including African-Americans, Latinx, Asian Americans, and Native Americans — with the ultimate goal of increasing minority participation in lupus clinical trials. In 2020, activities included the LRA’s Multi-Cultural Outreach Task Force and Lupus Clinical Trials Fairs.
The following companies contributed the amounts indicated for partial support of Lupus Multi-Cultural Engagement Initiatives in 2020:
2020 Lupus Multi-Cultural ENGAGEMENT INITIATIVES
Amgen $15,000
Genentech $45,000
GSK $65,000
LUPUS INDEX
In 2020, the Lupus Research Alliance continued developing the Lupus Index, a cloud-based data warehouse being created through a collaboration between the Lupus Research Alliance, its affiliate Lupus Therapeutics, and the National Minority Quality Forum.
The following companies contributed the amounts indicated for partial support of Lupus Index in 2020:
AstraZeneca $50,000
Aurinia Pharmaceuticals Inc. $50,000
GSK $75,000
The following companies contributed the amounts indicated for partial support of Lupus Research Alliance’s virtual Gala held on November 23, 2020 :
Aurinia Pharmaceuticals Inc. $15,000
Equillium Inc. $5,000
WALK WITH US TO CURE LUPUS
Walk with Us to Cure Lupus is Lupus Research Alliance’s signature national fundraising and awareness program, which has taken place in close to a dozen locations from coast to coast. In 2020, this event was converted to a virtual format due to the pandemic. The virtual ManyOne Can Walk with Us to Cure Lupus, held on September 12, raised over $1 million for lupus research and engaged constituents in areas of the country (and even outside of the U.S.) that would not normally participate in our Walk program.
The following companies contributed the amounts indicated for partial support of Lupus Research Alliance’s ManyOne Can Walk with Us to Cure Lupus virtual event in 2020:
2020 MANYONE CAN VIRTUAL WALK WITH US TO CURE LUPUS
Aurinia Pharmaceuticals Inc. $15,000
GSK $200,000
Johnson & Johnson $100,000
