Pharmaceutical and Biotech Support of the Lupus Research Alliance – 2021
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 SLE, the fact remains that there have been only three 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 2021 from pharmaceutical and biotech companies:
Total pharmaceutical company funding for Scientific Meetings in 2020: $130,000.
See details below in Scientific Conference section
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 2021: $375,000
See details below in Corporate Membership section
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 2021: $292,500
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 2021: $875,000
See details below in Diversity and Health Equity section
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 2021, as noted under details.
Total pharmaceutical company funding for Special Events in 2021: $30,000
See details below in Special Events section
WALK WITH US TO CURE LUPUS
TheWalk 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 2021: $282,500
See details below in Walk with us to Cure Lupus section
Thank you to all of the companies who provided funding in 2021
*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.
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 2021 (same for all companies):
Aurinia Pharmaceuticals U.S. Inc.
Bristol Myers Squibb
Janssen Research & Development, LLC
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 2021 (same for all companies):
Aurinia Pharmaceuticals Inc.
Bristol Myers Squibb
Eli Lilly and Company
Horizon Therapeutics (includes Viela Bio)
Idorsia Pharmaceuticals Ltd
Janssen Research & Development, LLC
Kezar Life Sciences
Unraveling Lupus Complexity Educational Efforts
We believe that to advance lupus research, we need to first unravel the complexities of this highly individualized disease, as this is what will lead to new breakthroughs in new treatments. Because lupus is so complex and heterogenous, it can be difficult to diagnose and hard for patients to understand and self-identify with their own symptoms and manifestations of their disease. Educating the broader public about the complexity can help to drive earlier diagnosis and ultimately better clinical trial engagement for those that are diagnosed. In 2021 LRA provided educational webinars and a video series to educate patients on the complexities of lupus.
The following companies contributed the amounts indicated for partial support of the Unraveling Lupus Complexity Educational Efforts public education campaign in 2021:
Aurinia Pharmaceuticals Inc.: $35,000
Janssen Research & Development, LLC: $50,000
Clinical Trials Education and Recruitment
The Lupus Research Alliance launched a comprehensive clinical trial education and recruitment campaign in 2021 with the goal of driving more diverse enrollment in clinical trials and improving engagement for those who chose to enroll. We believe this is one of today’s most pressing issues and that only through diversity can we truly understand the impact of treatments on every individual living with lupus.
The following companies contributed the amounts indicated for partial support of the Lupus Clinical Trials Education and Recruitment education campaign in 2021:
EMD Serona: $25,000
The following companies contributed the amounts indicated for partial support of the Virtual Clinical Trials Fair in 2021:
Kezar Life Sciences: $7,500
Other Lupus Awareness Activities
The following companies contributed funds for partial support of other Lupus Awareness/Education/Advocacy Activities in 2021 as noted below:
AstraZeneca $20,000 (Influencer Engagement Training)
AstraZeneca $25,000 (Educational Grant)
Aurina Pharmaceuticals Inc. $30,000 (Learn From Lupus Campaign)
Project CHANGE by Lupus Therapeutics
The Lupus Research Alliance (LRA) and its affiliate, Lupus Therapeutics (LT), recognize that there are systemic issues that need to be addressed to attain our ultimate goal of ensuring that when a new medication is approved, it has been sufficiently tested in, and is supported by and accessible to those who disproportionately suffer from the impact of this chronic and often debilitating illness.
Project CHANGE by LT aims to implement and evaluate community-based responses to this systemic challenge that have a high potential for success. The LRA and LT – which includes the Lupus Clinical Investigators Network (LuCIN) are uniquely positioned to connect people with lupus, institutions engaged in the clinical research process including academic medical centers, medical and nursing associations, other patient advocacy organizations who touch people with lupus, community groups and women’s health groups at the national and local level to effect change with the ultimate goal of improving the lives of people with lupus.
The following companies contributed the amounts indicated for partial support of the Project CHANGE by Lupus Therapeutics program in 2021:
Diversity in Lupus Research Program
The Lupus Research Alliance (LRA) aims to accelerate innovative research and treatment breakthroughs in lupus research. Success in this endeavor will require a talented, tenacious, and diverse taskforce capable of addressing the complexity inherent to our understanding of lupus. To foster the development of talented and promising young scientists from these groups in lupus research, the LRA is launched a Diversity in Lupus Research Program in 2021– three new grant programs to address issues of diversity and equity in lupus research.
The following companies contributed the amounts indicated for partial support of the Diversity in Lupus Research program in 2021:
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 2021:
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 202`, 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 2021:
Aurinia Pharmaceuticals Inc.: $35,000
EMD Serono: $25,000
The following companies contributed the amounts indicated for partial support of Lupus Research Alliance’s virtual Gala held on November 22, 2021:
Aurinia Pharmaceuticals Inc. $25,000
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 2021, this event continued in a virtual format due to the pandemic. The virtual ManyOne Can Walk with Us to Cure Lupus, held on October 2, 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 2021:
2021 MANYONE CAN VIRTUAL WALK WITH US TO CURE LUPUS
Aurinia Pharmaceuticals Inc. $32,000
Johnson & Johnson $100,000