News and Events
LADA Expands Our Lupus Research Program
LADA is excited to share that we expanded our lupus research program investments in 2022 even after having a memorable year of giving to research last year.
For anyone struggling to live with lupus or to love someone with lupus, what motivates us to face another day is our hope that research advancements lie just around the corner that will improve our lives. Because of this, we believe wholeheartedly in investing in quality research here at the Lupus and Allied Diseases Association.
During the 2022 Golf Classic Awards Dinner, we were thrilled to present The Lupus Research Alliance (LRA) Representatives and Golfers Albert Roy, Dorey Neilinger, and Ian Kirkman with our 2022 annual research donation for $150,000 to continue to support Dr. Zahi Touma at University of Toronto for his Modeling Cognitive Impairment project and Dr. Joyce Chang at Boston Children’s Hospital for her Pediatric Vascular Injury project. We are honored to say that we have now given $981,050 in 21 years to support lupus research at the LRA.
In July, we donated $70,000 to support the Pediatric Lupus Research Program at the Childhood Arthritis and Rheumatology Research Alliance (CARRA) for two novel pediatric lupus projects.
In June, we donated $50,000 to the Lupus Foundation of America to continue supporting Dr. Gary Gilkeson's Mesenchymal Stromal Stem Cell Research Program bringing our total support to the LFA to $503,569 since 1990 for various research projects.
In May, LADA presented a check for $150,000 to Maria Kontaridis, PhD, Executive Director and Gordon K. Moe Professor and Chair of the Biomedical Research and Translational Medicine at the Masonic Medical Research Institute (MMRI) in Utica, NY for three distinct lupus projects. This funding also launched our Lupus Patient Advocacy and Research and Development Collaborative Initiative with the MMRI. Since we previously supported lupus research at the Institute from 1990 to 1999, this brings our total research support amount to $215,000 to MMRI. We love the fact that lupus research is back in the Mohawk Valley and that LADA was founded in 1978 in East Utica, not far from the Institute.
We continued to support the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund at The Rheumatology Research Foundation with a $30,000 grant in February. This Fund honors the life and legacy of Dr. Chevrier, a pioneer and patient advocate in the lupus field, and dear friend to us at LADA. The fund supports lupus research funded within the Foundation’s preceptorships program and has grown to $74,705 since it was established in March 2021.
LADA donated a record breaking $450,000 to lupus research in 2022, bringing our overall total to $1,848,324 since 1990. This is due in large part to the monies raised at the Golf Classic each year. Not too bad for our all-volunteer and patient-led organization, we are small but mighty and march among giants.
LADA President & CEO Kathleen Arntsen presented our $150,000 annual research donation to Lupus Research Alliance Representatives Dorey Neilinger, Ian Kirkman, and Al Roy at the Golf Classic Dinner.
LADA Board of Directors presented a $150,000 lupus research donation to Masonic Medical Research Institute Executive Director Dr. Maria Kontaridis on May 19,2022.
LADA Board of Directors and supporters with MMRI's Executive Director Dr. Maria Kontaridis, Scientific Operations Manager, Jason McCarthy, PhD, and Postdoctoral Fellow, Samantha Le Sommer, PhD at the Institute on September 22, 2021.
LADA Celebrates Lupus Awareness Month
LADA’s Board of Directors and Medical Advisory Board Members were excited to join MMRI Executive Director Maria Kontaridis, Ph.D., Jason McCarthy, Ph.D., Samantha Le Sommer and Robert Hewson DPM and the MMRI staff who graciously hosted us and provided a forum to promote Lupus Awareness Month on May 19, 2022. We also supported three groundbreaking and innovative lupus research grants at with a $150k donation and look forward to advancing our collaborative advocacy and research initiative to improve patient lives with the Institute.
In addition, we recognized and thanked Senator Charles E. Schumer for sponsoring a United States Senate proclamation and New York State Senator Joseph A. Griffo, Assemblywoman Marianne Buttenschon and Assemblyman Brian D. Miller for sponsoring the joint legislative resolution commemorating May 2022 as Lupus Awareness Month and giving remarks. Senator Griffo has been the Senate Prime Sponsor of the resolution since 2009 when LADA launched the state awareness initiative with him then along with former Assemblywoman and current Commissioner of the New York State Office of General Services RoAnn Destito. Assemblyman Fred Thiele (1st Assembly District) is the current Assembly Prime Sponsor of the resolution and the Lupus Agencies of NY State- Lupus Research Alliance, Lupus Foundation of America, Inc., Northeast Region, Lupus Alliance of Upstate New York and LupusChat continue to promote the initiative. Lupus groups throughout the country join with state and federal lawmakers each May to help educate the general public about lupus and the need for research program support to develop more effective treatments and discover the cure for this baffling condition.
We also thanked Utica Mayor Robert M. Palmieri and Oneida County Executive Anthony J. Picente for attending and giving remarks. Holding this event in Utica, NY was especially meaningful to us since LADA was founded in 1978 in Utica, NY only a few blocks from the MMRI by the Curri Family after their daughter passed away from lupus. The organization was originally called The Marguerite Curri Lupus Erythematosus Chapter and it has grown exponentially since then bringing our journey full circle now, back to where it all began.
Pictured above are NYS Assemblywoman Marianne Buttenschon, LADA President & CEO Kathleen Arntsen, NYS Senator Joseph Griffo and NYS Assemblyman Brian Miller with the 2022 NYS Lupus Awareness Resolution.
LADA Board of Directors and supporters with MMRI's Executive Director Dr. Maria Kontaridis, Scientific Operations Manager, Board President Robert Hewson, DPM, Jason McCarthy, PhD, and Postdoctoral Fellow, Samantha Le Sommer, PhD at the Institute.
LADA Continues to Support Lupus Research Fund to Honor Dr. Marc Chevrier
The Lupus and Allied Diseases Association, Inc. has donated $30,000 in February of 2022 in additional funding to the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund which LADA founded at the Rheumatology Research Foundation in 2021. This fund was established to honor the life and legacy of Marc Chevrier, MD, PhD, FACR, a pioneer and patient advocate in the field of lupus with the blessing of his wife Diane and family. The fund has now raised $74,805 since its inception in March of 2021 for the RRF's Preceptorship Program.
Marc's unexpected passing is a tremendous loss to the lupus world, especially to the researcher and patient communities. He was incredibly passionate about improving the care of people with lupus and other autoimmune diseases and dedicated his career to these pursuits. Marc was incredibly kind and generous, and was devoted to his loving family and many lifelong friends.
Marc was a speaker at several of our education events and enjoyed interacting with the patient community at education and scientific meetings. Known for his jovial personality and long beard, he was fondly nicknamed Papa Lupus during the 2019 Lupus International Meeting.
"The worldwide lupus and rheumatology communities lost a brilliant scientist, caring clinician, innovative educator, and passionate advocate with the recent passing of our dear friend Dr. Marc Chevrier. We are honored to partner with the Foundation to establish this fund in Marc’s name to support novel lupus research,” said Kathleen A. Arntsen, President & CEO of Lupus and Allied Diseases Association, Inc., “Marc was respected by all who knew him, but to those of us living with lupus, Papa Lupus was our hero; giving us strength and hope that better treatments were just around the corner."
We are humbled by the generosity and benevolence of the Chevrier Family during an incredibly difficult time in their lives by selecting LADA to receive donations in Marc's memory. This prompted us to establish the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund at the Rheumatology Research Foundation. All memorial funds received by LADA in his name will support Marc's fund.
The Rheumatology Research Foundation announced the fund in a press release on March 9, 2021. To view the entire press release click here.
We are thankful to all who have supported the fund so far and hope that others will continued to do so in honor of Dr. Chevrier. To support or learn more about the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund click here.
FDA Approves AstraZeneca’s SAPHNELO™ (anifrolumab-fnia) in the US for Moderate to Severe SLE
LADA is excited to share that after eagerly waiting for over a decade for a new drug to be approved to treat systemic lupus erythematosus (SLE), that on August 2nd, AstraZeneca 's SAPHNELO™ (anifrolumab-fnia) was approved by the US Food and Drug Administration (FDA) for the treatment of adult patients with moderate to severe SLE who are receiving standard therapy.
As a passionate patient-led organization, all of us at Lupus and Allied Diseases Association, Inc. are thrilled with the FDA approval of SAPHNELO™ (anifrolumab-fnia) as the lupus community has waited far too long for much-needed additional safe and effective treatment options for people with lupus. We applaud and recognize the efforts of AstraZeneca in achieving this victory along with the researchers and clinicians, the FDA for recognizing its efficacy and importance in addressing the existing unmet need in lupus, and most especially the individuals with lupus and their loved ones for stepping up and participating in the research trials.
We also thank the Lupus Foundation of America, Inc. and Lupus Research Alliance, and the countless other lupus organizations and individuals throughout the country who advocated for research, educated the FDA and public officials through the Lupus PFDD and other initiatives, promoted awareness to the public about the importance of clinical research in getting new treatments, and promoted patient participation in research. It took an entire community working tirelessly for decades to accomplish this amazing win and despite the pandemic, we have proven our resilience by achieving three drug approvals; this one for SLE and two for Lupus Nephritis in eight months. Let’s hope that these set a precedent for many more lupus and lupus nephritis drug approvals to follow that can improve lives.
Now let’s all work together to ensure that they are accessible and affordable and make their way to the people who desperately need them.
The efficacy of SAPHNELO has not been evaluated in patients with severe active lupus nephritis or severe active central nervous system lupus and is not recommended for use in these patient populations.
As we know all too well, SLE is a highly complex autoimmune condition that currently affects up to 300,000 Americans with symptoms ranging from mild to life-threatening. There have been limited treatment options available to us, so many prescribed treatments have been developed for other diseases besides lupus. LADA and the entire lupus community has been very vocal on the critical unmet need in lupus and urgency in developing newer and safer drugs for people living with this debilitating disease. The approval of SAPHNELO marks the first regulatory approval for a type I interferon (IFN-1) receptor antagonist and the only new treatment approved for SLE in 10 years.
This FDA approval was based on efficacy and safety data from the SAPHNELO clinical development program, including two TULIP Phase III trials and the MUSE Phase II trial. The most common side effects of SAPHNELO include upper respiratory infections, bronchitis, infusion reactions, shingles and cough.
Here is a link to the official press release from AstraZeneca.
LADA was featured in AstraZeneca's LinkedIn op-ed and LADA President & CEO Kathleen Arntsen was quoted, “We are thrilled that there are additional treatment options that will provide prescribers with the vital flexibility to base their therapeutic decisions on the uniqueness of the individual that they are treating. We often say that people with lupus are like ‘snowflakes’ as there are no two cases exactly alike."
To read the op-ed click here
LADA Engages with ICER on Lupus Nephritis Treatments Review
LADA has been actively engaging with the Institute for Clinical and Economic Review (ICER) since August 2021 to ensure that our unique viewpoint regarding the lupus patient journey was both included and recognized during their review of belimumab (Benlysta®, GlaxoSmithKline) and voclosporin (Lupkynis™, Aurinia Pharmaceuticals), two recently FDA-approved drugs in assessing their clinical effectiveness and value for the treatment of lupus nephritis.
The overall review is very positive for the lupus community as it shows value in both lupus nephritis treatments. This is a significant victory for us given that there are many lupus and lupus nephritis drugs in the pipeline right now that may be reviewed by ICER in the future and will need to be covered by payers.
LADA fought very hard to ensure that the ICER Team listened to us regarding lifetime impacts to patient and caregiver lives on the topics of education, career and motherhood, as well as steroid sparing and health inequities. ICER modified their voting questions a week before the meeting to include these contextual considerations.
ICER's Patient Engagement Team invited LADA to engage with them on the Lupus Nephritis Drug Review to help them to better understand the unmet medical needs that exist with lupus and lupus nephritis and their impact on quality of life from the patient and caregiver perspective. LADA has provided written comments during each stage of the process to highlight the daily challenges and burden of disease over a person's lifetime, emphasizing what matters most to people living with the disease.
LADA President & CEO, Kathleen Arntsen had the privilege of serving as the Patient Expert Reviewer for the Draft Evidence Report and Draft Policy Recommendations Report. She also participated in the March 26, 2021 New England CEPAC Meeting on Treatments for Lupus Nephritis as a Patient Expert Panelist providing the patient and community perspective during the Meeting and Policy Roundtable along with LupusChat Chief Operating Officer Christele Felix.
LADA Patient Advocate Dina Thachet also participated in the Meeting by sharing her very compelling journey with lupus and struggles to be a Mother during the Public Comments portion of the meeting.
LADA would also like to recognize and thank the BWHI, Aurinia and GSK Teams as well as Dr. Brad Rovin; Dr. Meggan Mackay; Linda Goler Blount, BWHI President & CEO; and Toni Grimes, LFA Advocate for their public comments and participation during the meeting and the ACR, LFA, and LRA and others who also provided input during the process.
To learn more about the Lupus Nephritis Review and download materials or view the meeting and policy roundtable videos click here.
To learn more about ICER click here.
The Policy Roundtable Expert Panelists discussing policy recommendations during the New England CEPAC Meeting.
LADA Patient Advocate Dina Thachet sharing her personal journey with lupus and to be a Mother during the New England CEPAC Meeting Public Comments Session.
LupusChat Chief Operating Officer Christele Felix sharing her personal lupus and caregiver journeys as a Patient Expert Panelist during the New England CEPAC Meeting Voting Session.
LADA President & CEO Kathleen Arntsen sharing patient and caregiver input as a Patient Expert Panelist during the New England CEPAC Meeting Voting Session.
LADA's Statement on Racism and Inequality
As our nation continues to experience turmoil and uncertainty during these challenging times from both the COVID-19 pandemic and its effect on the economy, many Americans now struggle to address longstanding systemic racism and inequality with the goal of impacting meaningful change.
The Lupus and Allied Diseases Association is extremely disheartened by and strongly opposed to acts of discrimination, injustice, racism, and violence and we stand with Black, Indigenous, and People of Color (BIPOC) as well as LGBTQ+ individuals and others who desire a more empathetic, respectful, tolerant and just society.
We are dedicated to addressing and overcoming social inequities and health disparities through effective advocacy, especially since both lupus and COVID-19 disproportionately impact communities of color.
Coronavirus (COVID-19) and Lupus
Access to Anti-Malarial Medications
As you may have heard in the news or on social media, the anti-malarial drugs hydroxychloroquine (Plaquenil) and chloroquine (Aralen) used to treat people with lupus and rheumatoid arthritis may be effective in treating individuals with COVID-19. This may cause shortages in the supply chain, impacting people with lupus and rheumatoid arthritis by possibly disrupting access and continuity of care.
We are actively engaged in collaborative efforts with lupus, rheumatology and autoimmune patient and provider organizations and other key stakeholders to make sure that public officials address the situation appropriately to ensure patients have ongoing access to treatments.
New York State Update
New York State Governor Andrew M. Cuomo issued an Executive Order and Commissioner of Health Howard A. Zucker, MD issued a letter protecting access to both anti-malarials for people with autoimmune disorders. The letter states, "at this time outpatient pharmacies in New York State should be reserving their supplies of hydroxychloroquine and chloroquine for those patients with an FDA or compendia supported use such as lupus or rheumatoid arthritis. When prescribed to treat one of these conditions, a patient can receive up to a 90- day supply if authorized by the prescriber."
You can download a copy of the letter and share it with your physician and pharmacist here.
Information on Coronavirus
As an organization led by people with lupus and allied diseases, we understand firsthand the daily challenges faced as we attempt to manage our chronic conditions, which are now greatly increased by the Coronavirus (COVID-19) pandemic. As we all struggle to access current, accurate and reliable information during this crisis, we want to ensure you that your safety and the well-being of the community is our primary concern. We are collaborating with patient and provider organizations, public officials and other key stakeholders to safeguard vital access to care and treatments.
What You Should Know About COVID-19
According to the Centers for Disease Control and Prevention (CDC), the vast majority of COVID-19 cases are mild. However, older people and individuals with underlying chronic conditions such as lupus or other autoimmune conditions are at higher risk of developing more serious COVID-19 illness, especially if you are immunocompromised. The CDC suggests that these populations take special precautions.
Special Precautions for Those at Higher Risk
It is important to note that the disease can be spread even before a person is visibly sick, which is why precautions for vulnerable populations are important. Special precautions suggested by the CDC for vulnerable populations include:
Washing your hands: Wash hands frequently with soap and water, for at least 20 seconds. If you can’t wash your hands, use hand sanitizer.
Covering your mouth: When sneezing or coughing, use tissues and promptly dispose of them or cover your mouth with your sleeve or elbow
Staying home to further reduce your risk of being exposed during an outbreak.
Stocking up on necessary supplies, like food and medication.
Cleaning and disinfecting frequently touched surfaces.
Contacting your physician and requesting an extra supply of your medications in case you need to stay home for a while. Please remember that you should never stop taking your drugs or change your dosages without first talking to your doctor.
Taking everyday precautions to keep space between yourself and others (social distancing).
Keeping away from others who are sick, limiting close contact, and washing your hands often when in public.
Avoiding crowds as much as possible.
Avoiding travel, especially cruises and non-essential air travel.
Developing delivery options for necessary items through friends, family, or businesses.
We cannot emphasize this strongly enough, please contact your physician who treats you regularly if you suspect that you have COVID-19 or if you have any medication questions or concerns. Your own doctor knows you best, including your personal medical history, allergies, and medications. Myths and misinformation arise during crises, especially on social media platforms and the internet.
We encourage you to follow the Centers for Disease Control and Prevention (CDC) website for the most up-to-date information as the situation evolves.
LADA also recommends the following accurate, current and reliable sources for information on COVID-19 for patients, their families and communities.
National Health Council (NHC)
Additional valuable resources include:
American College of Rheumatology (ACR) ACR Announcement: Coronavirus Disease (COVID-19)
Caregiver Action Network COVID-19 and Family Caregiving Resources
Global Healthy Living Foundation GHLF COVID-19 Patient Support
Lupus Foundation of America (LFA) National Resource Center on Lupus Coronavirus (COVID-19) and Lupus
National Infusion Center Association COVID-19 Guidance & Resource Toolkit
National Kidney Foundation Be Prepared: Kidney Patient Prep for Coronavirus
Please take the necessary precautions during this challenging time to be safe. We can get through this together.
COVID-19 Vaccine Education and Equity Project
The COVID-19 Vaccine Education and Equity Project is convening a dialogue among organizations representing the multitude of constituencies that face challenges from COVID-19, particularly diverse communities that have been most harmed and those on the front lines of the pandemic. We aim to encourage adherence to robust regulatory review, share knowledge about that process, and raise awareness of the need to ensure that all stakeholders are involved at each stage of the process.
Learn more at www.covidvaccineproject.org
LADA Participates in Autoimmune COVID-19 Research Project
We are excited to share that we were invited by Global Healthy Living Foundation (GHLF), one of our advocacy partners, to participate in the COVID-19 Research Project of the Autoimmune Research Collaborative which includes ArthritisPower, the Vasculitis Patient-Powered Research Network (VPPRN), Inflammatory Bowel Disease Partners (IBD Partners), and iConquer MS.Registry. The goal of the project is to understand the COVID-19 related concerns and behaviors of patients with autoimmune and inflammatory conditions. Over time, the study aims to examine the concerns and behaviors of patients with autoimmune, rheumatic, and related conditions during the COVID-19 pandemic and to collection information from patients about illness and testing.
We are asking individuals with autoimmune conditions to participate in this important project by going to the Autoimmune COVID-19 Project homepage through LADA's personalized link bit.ly/LADAAutoimmuneCOVID where you can sign up for the survey by providing an email address. GHLF would then send custom invitations and track survey completion internally.
As you know, information about the impact of COVID-19 on patients with autoimmune, rheumatic and related conditions is needed to support decision-making by physicians, policymakers and other patients when faced with a highly transmissible infectious disease. We intend for the patient-facing questions asked in the COVID-19 Project to complement data being gathered by physician-facing registries, collecting information only patients can provide. Our aim is to pool real-time data to address key questions for our vulnerable population during this ongoing public health crisis.
Please take part in this important project by clicking on bit.ly/LADAAutoimmuneCOVID and making your voice heard on the pandemic and its impact on you as a person living with autoimmune disease.
Thank you for being part of the solution.
Lupus NYS Taxpayer Gifts is a Reality
Following 10 years of advocacy efforts from the Lupus Agencies of NYS and support from our legislative champions Assemblywoman Crystal Peoples-Stokes and Senator Kevin Parker, we are thrilled to announce that the Lupus Education & Prevention Fund is again listed under Voluntary Contributions on the 2021 NYS Tax Return. Contributions to this fund will be used to support NYS lupus research, education, prevention and awareness program grants. If you are a New Yorker, please support this effort by checking the Lupus Fund on your return and share with others. It is an option whether filing by paper, electronically or through your accountant, but you must inform them.
Lupus Patient Voices Heard
Top decision makers at the U.S. Food and Drug Administration(FDA) heard from over 550 people impacted by lupus on September 25, 2017 at an unprecedented in-person meeting and live webcast about what it's really like to live with the disease and what they need most from new treatments. The Lupus and Allied Diseases Association, the Lupus Foundation of America, and the Lupus Research Alliance organized the meeting as part of the FDA's externally-led Patient-Focused Drug Development (PFDD) Initiative. The PFDD was created by the FDA to allow regulators to better understand the perspectives of people with disease such as lupus so they can better assess the benefits and risks of drugs under review. For more information visit LupusPFDD.org
The Lupus PFDD Community at the Pre-Meeting Dinner on September 24, 2017
Lupus Community Representative Kathleen Arntsen had the honor of giving Opening Remarks at the Lupus PFDD Meeting on behalf of the community.
LADA Board Secretary David Arntsen, Attendee Lorenzo Hall, and LADA President & CEO Kathleen Arntsen.
LADA Representatives Tiffany Westrich-Robertson, Lisabeth Iglesias, and Kaamilah Gilyard at the Meeting.