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Pharmaceutical and Biotech Support of the Lupus Research Alliance

Pharmaceutical and Biotech Support of the Lupus Research Alliance

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. Knowing that only one drug has been approved for lupus in the past 60 years, 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 update of 2018 funding support from pharmaceutical and biotech companies:

SCIENTIFIC CONFERENCES

In 2018, the Lupus Research Alliance held two scientific conferences to promote dialogue and collaboration among investigators and key thought leaders in the field of lupus research.

Total pharmaceutical company support for Scientific Conferences in 2018: $288,500.

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 companies, our senior staff, and the lupus community on current research and advocacy issues in the lupus community.

Total pharmaceutical company support through Corporate Memberships in 2018: $345,000.

See details below in Corporate Membership section

LUPUS AWARENESS/EDUCATION/ADVOCACY

The pharmaceutical industry and other key players assist the Lupus Research Alliance in raising awareness and providing accurate information 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 2018: $534,160.

See details below in lupus awareness/education/advocacy section

MULTI-CULTURAL OUTREACH INITIATIVES

The Lupus Research Alliance continues to expand initiatives throughout the country to increase outreach to 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 Multi-Cultural Outreach Initiatives in 2018: $437,000.

See details below in Multi-Cultural Outreach Initiatives section

SPECIAL EVENTS

The Lupus Research Alliance holds special events throughout the year to increase lupus awareness and advocacy while raising funds for its lupus research programs.

Total pharmaceutical company funding for Special Events in 2018: $95,000.

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 2018: $158,000.

See details below in Walk with us to Cure Lupus section

FUNDING FOR LUPUS INVESTIGATOR GRANTS

For the past several years, Pfizer’s Centers for Therapeutic Innovation (CTI) and Lupus Research Alliance have been co-funding novel translational research projects driven by leading academic medical centers. The number of grants given each year is flexible, with the amount of funding dependent on the size and scope of the project.

Total funding from Pfizer’s Centers for Therapeutic Innovation (CTI) for grants for lupus scientific investigators in 2018: $854,608.

Thank you to all of the companies who provided funding in 2018

*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 2018 Lupus Therapeutics collected $1,640,071 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 Research Alliance’s Annual “Forum for Discovery” Conference

(November 28-30, 2018 in New York City) gathered 150 scientific researchers from academic medical institutions across the country and the world to share their results and exchange ideas in the field of autoimmunity and lupus research.

The following company contributed the amounts indicated for partial support of the 2018 Forum for Discovery:

AbbVie $15,000

Amgen $25,000

AstraZeneca $25,000

Biogen $15,000

Boehringer-Ingelheim Phamaceuticals, Inc. $15,000

Celgene Corporation $25,000

Eli Lilly and Company $15,000

EMD Serono $25,000

GSK $25,000

Janssen Research & Development, LLC $38,500

Merck & Co., Inc., Kenilworth, New Jersey, U.S.A. $15,000

Pfizer Inc./Pfizer’s Centers for Therapeutic Innovation (CTI) $15,000

Sanofi $10,000

Lupus Research Alliance’s 2018 Human Immunology — Technology (HIT) Conference

(January 28-30, 2018 in Miami, Florida) convened a panel of world-wide experts from human immunology, lupus, and the major technology centers. The goal of this high-level scientific meeting was to identify and prioritize lupus research challenges and opportunities that can now be addressed with the newest technologies.

The following company contributed the amounts indicated for partial support of the 2018 HIT Conference:

Celgene Corporation $25,000

Membership in the Lupus Research Alliance’s Corporate Leadership Circle (CLC) provides an opportunity for companies to provide support for and receive regular updates on our current 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 in 2018, at a membership contribution of $22,500 (same for all companies):

AstraZeneca

Aurinia Pharmaceuticals Inc.

Bristol-Myers Squibb

Celgene Corporation

Eli Lilly and Company

EMD Serono

GSK

Janssen Research & Development, LLC

Mallinckrodt Pharmaceuticals

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 patients with lupus.

The following companies were members of the Lupus Research Alliance’s Lupus Industry Council in 2018, at a membership contribution of $7,500 (same for all companies):

AbbVie

AstraZeneca

Aurinia Pharmaceuticals Inc.

Biogen

Bristol-Myers Squibb

Celgene Corporation

Eli Lilly and Company

EMD Serono

GSK

Janssen Research & Development, LLC

Mallinckrodt Pharmaceuticals

Pfizer Inc.

UCB

2018 Lupus Research Alliance National Lupus Advocacy Meeting and Hill Day

(March 19-20, 2018 in Washington, DC) brought together advocates and staff representing 17 states to participate in our annual leadership training meeting for local and state lupus patient advocates, preparing them to meet with their legislators about relevant lupus issues on “the hill”.

The following companies contributed the amounts indicated for partial support of the Lupus Research Alliance 2018 National Lupus Advocacy Meeting and Hill Day:

Bristol-Myers Squibb $25,000

Eli Lilly and Company $10,000

GSK $35,000

Mallinckrodt Pharmaceuticals $25,000

2018 Advancing Lupus Care Through Research and Advocacy Series — Updates / Conferences in Four Cities (New York City – July 17, Dallas, TX – July 28, Philadelphia, PA – August 11, Denver, CO – Oct. 27)

Lupus Research Alliance held a series of events in four cities (see above) to provide people with lupus, advocates, and other community stakeholders the most current information available on lupus research.

The following companies contributed the amounts indicated for partial support of the Lupus Research Alliance 2018 Advancing Lupus Care Through Research and Advocacy Series:

Celgene Corporation $20,000

Genentech $15,000

GSK $30,000

Mallinckrodt Pharmaceuticals $15,000

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 2018:

Bristol-Myers Squibb $60,000

Celgene Corporation $35,000

Genentech $10,000

GSK $65,000

Pfizer Inc. $100,000

Other Lupus Awareness Activities (Lupus Awareness Month media campaigns, lupus advocate speaker expenses, Video series, etc.)

The following companies contributed the amounts below for partial support of other Lupus Awareness Activities in 2018:

Aurinia Pharmaceuticals Inc. $6,000

Celgene Corporation $3,160

EMD Serono $30,000

GSK $50,000

Multi-Cultural Outreach Task Force (MCOTF)

The lupus MCOTF was created in 2011 to increase outreach to people in the racial/ethnic groups most affected by lupus. In the past year, Lupus Research Alliance continued to expand its grassroots outreach efforts through Task Force member volunteers by targeting specific goals within the following outreach priority areas: Faith-Based Organizations, Corporations, Social Media, College/Universities, and Community Organizations and Expos.

The following companies contributed the amounts indicated for partial support of the Lupus Research Alliance Multi-Cultural Outreach Task Force (MCOTF) in 2018:

Genentech $40,000

GSK $40,000

LUPUS INDEX

In 2018, the Lupus Research Alliance began developing the Lupus Index, a cloud-based data warehouse which will be built in 2019 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 2018:

Bristol-Myers Squibb $75,000

GSK $75,000

Janssen Research & Development, LLC $75,000

Mallinckrodt Pharmaceuticals $75,000

Other Multi-Cultural Outreach Activities

The following companies contributed the amounts below in support of Multi-Cultural Outreach initiatives in 2018:

Janssen Research & Development, LLC $22,000 (Clinical Trial Awareness Events for Diversity in Lupus)

Mallinckrodt Pharmaceuticals $35,000 (Lupus/Clinical Trials Basic Education Toolkit for Multi-Cultural Engagement Partnership audiences)

The following companies contributed the amounts indicated for partial support of Lupus Research Alliance’s special events in 2018 (Annual Gala, Luncheons, etc.):

Aurinia Pharmaceuticals Inc. $15,000

GSK $55,000

Pfizer Inc. $25,000

WALK WITH US TO CURE LUPUS

Walk with Us to Cure Lupus is Lupus Research Alliance’s signature national fundraising and awareness program, with close to a dozen locations from coast to coast. To date, the Walk with Us to Cure Lupus program has raised over $36 million for lupus research. Tens of thousands of volunteers help plan and participate in order to increase awareness of lupus and raise vital funds for lupus research.

The following companies contributed the amounts indicated for partial support of Lupus Research Alliance’s Walk with Us to Cure Lupus in 2018 (with sponsored events in Baltimore, Boston, New Jersey, New York City, San Diego, and Washington, DC):

Aurinia Pharmaceuticals Inc. $10,000

Bristol-Myers Squibb $13,000

Celgene Corporation $15,000

EMD Serono $5,000

GSK $15,000

Johnson & Johnson $100,000

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