News and Events
LADA Engages with ICER on Lupus Nephritis Treatments Review
LADA has been actively engaging with the Institute for Clinical and Economic Review (ICER) since July 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 has 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 Establishes Lupus Research Fund to Honor Dr. Marc Chevrier
The Lupus and Allied Diseases Association, Inc. established the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund at the Rheumatology Research Foundation effective March 1, 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.
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, (pictured above with LADA President & CEO Kathleen Arntsen at the 2019 LAUNY Buffalo Symposium) 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.
To support or learn more about the Marc R. Chevrier, MD, PhD, FACR, Lupus Research Memorial Fund click here.
LADA President & CEO Featured in Lupus Nephritis Drug Launch
LADA President & CEO Kathleen A. Arntsen was featured in the press release and video launch announcing the FDA-approval of voclosporin (Lupkynis™) developed by Aurinia Pharmaceuticals for the treatment of adult patients with active lupus nephritis on January 22, 2021 and in the video media tour on February 24, 2021 sharing her patient and advocacy organization leader perspective on the significance of the drug's approval.
“As a patient-led organization who understands all too well the urgent need for more efficacious treatments for people struggling to live with diseases of unmet need like lupus nephritis, we are thrilled with the approval of LUPKYNIS," said Kathleen A. Arntsen President and CEO of Lupus and Allied Diseases Association. “There is now a new treatment for this debilitating and life-diminishing condition that is four times higher for people of African descent and Asians and two times higher for Hispanics/Latinos and Native Americans. At a time when our nation faces extreme challenges such as addressing and overcoming social inequities and health disparities, this is welcome and promising news, especially since both lupus nephritis and COVID-19 disproportionately impact communities of color.”
To read the entire press release click here.
To watch the video click here.
LADA's Annual Research Donation
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.
We are excited to announce that LADA supported two research grants totaling $220,000
in 2020 which made it a record breaking year for us in research support. We are honored to have now supported $1,084,000 in research funding overall to date since we began our
research grant program in 1990. In April, we donated $100,000 to the Lupus Foundation
of America designating $50,000 to their promising Pediatric Research Program in partnership with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and $50,000 to Dr. Gary Gilkeson's Mesenchymal Stromal Stem Cell Research Program and $120,000 to the Lupus Research Alliance in September for their Lupus Innovation Award Research Program. Unfortunately, due to the pandemic, we were not able to present the checks in person this year.
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.
LADA donates another $100,000 to the Lupus Research Alliance!
The Lupus and Allied Diseases Association presented their annual research donation to the Lupus Research Alliance for $100,000 at the August 22, 2019 Lupus Charity Golf Classic in support of innovative lupus and autoimmune research. This brings us to a total of $591,000 that we have donated to support lupus research at the Lupus Research Alliance over the past 18 years, and an amazing $864,000 in lupus research funding overall since 1990.
Lupus Research Alliance representatives Ian Kirkman, Jonathan Marks, Al Roy, and Dorey Neilinger receiving the LRA's annual research donation from LADA President & CEO Kathleen Arntsen and Secretary David Arntsen.
The wonderful thing about being an advocate is that you can make your voice heard from the comfort of your home and you can even be in your sweats or pajamas.
LADA President & CEO Presents at Lupus International Congress
Lupus and Allied Diseases Association President & CEO Kathleen Arntsen delivered a dynamic and informative presentation during the 13th International Lupus Congress urging people with lupus and their loved ones to become empowered and effective personal and public advocates. The goal of the session was for attendees to realize the positive impact of their participation in healthcare and research advocacy efforts. An overview of self-advocacy that included patient-centric care, stressing the importance of being engaged in one's own medical care to improve access and quality of life was also provided. Inspirational bits of Kathleen's personal lupus journey, road to empowerment, and advocacy experiences were woven throughout the presentation. Attendees came prepared to step up and shared their advocacy program initiatives in an interactive audience exercise at the end of the session.
"It was an honor to lead an interactive session on advocacy at the Lupus 2019 Meeting where lupus advocates from around the world shared their amazing efforts to improve lives,” commented Kathleen. “I am proud to be an advocate in the lupus community and stand alongside these incredible warriors.” Fighting for decades to make sure that the patient voice is recognized in the research, healthcare, regulatory and public policy arenas, Kathleen advises others on how to take part in the advocacy process. “The wonderful thing about being an advocate is that you can make your voice heard from anyplace, including the comfort of your home and you can even be in your sweats or pajamas. Each of you has the power and the passion to make a difference through advocacy.”
The Lupus 2019 Meeting held in San Francisco on April 5-8, 2019 was the 13th International Congress on Systemic Lupus Erythematosus and was an opportunity for researchers, clinicians, healthcare providers, patient advocates, organization leaders and people with lupus to learn about the latest lupus research while interacting with the global lupus community.
Kathleen’s presentation was entitled, “The Power of Advocacy to Improve Lives” and was part of a session called The Patient Voice. Besides allowing international patient advocates the opportunity to passionately share their advocacy initiatives, the session included an interactive word cloud representative of the attendees’ reactions to the program.
The session was mentioned as a favorite in the Congress organizers' closing remarks.
LADA President & CEO Kathleen Arntsen (center) with global lupus advocates.
Lupus 2019 Patient Voice Word Cloud
Lupus warriors from around the world at the Lupus 2019 International Meeting.
LADA Presents 2019 Research Donation
Lupus and Allied Diseases Association President & CEO Kathleen Arntsen presented $100,000 to Lupus Foundation of America President & CEO Steve Gibson on March 4, 2019 at the LFA's Advocacy Summit Rising Voices in Washington, DC following a luncheon presentation by Dr. Gary Gilkeson from the Medical University of South Carolina on his groundbreaking mesenchymal stem cell research in lupus. Kathleen stated, "I am excited to present this research donation check in the amount of $100,000.00 to the Lupus Foundation of America for your Pediatric Research and Mesenchymal Stem Cell Research Programs with $50,000.00 applied to support each one. This contribution validates our ongoing devotion to your research program and our continuing commitment to invest in the most promising lupus research in the nation. We have now donated $764,000.00 to lupus research to date!"
LADA President & CEO Kathleen Arntsen (left) presents $100,000 to Dr. Gary Gilkeson from the Medical University of South Carolina (center) and Lupus Foundation of America President & CEO Steve Gibson (right) during the LFA Advocacy Summit Luncheon.
Lupus advocates from across the country attended the LFA Advocacy Summit as LADA Representatives to raise their voices to Congress on lupus research and education programs. Pictured above from left to right are: Whitney Carter, Estela Mata, Juana Mata, Kathleen Arntsen, Christine Von Raesfeld, Amanda Greene, Jeffrey Anders, Carlene Harrison and Tiffany Peterson.
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 2019 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.
LADA Presents at FDA Public Meeting
On September 4, 2018, Lupus and Allied Diseases Association President & CEO Kathleen Arntsen presented comments at the U.S. Food and Drug Administration (FDA) public hearing on Facilitating Competition and Innovation in the Biological Products Marketplace that focused on the Biosimilar Action Plan announced by FDA Commissioner Scott Gottlieb in July.
The action plan addressed 4 key areas intended to improve biosimilar competition:
Improving the efficiency of the biosimilar and interchangeable product development and approval process;
Maximizing scientific and regulatory clarity for the biosimilar product development community;
Developing effective communications to improve understanding of biosimilars among patients, providers, and payers;
Supporting market competition by reducing gaming of FDA requirements or other attempts to unfairly delay market competition to follow-on products.
Kathleen gave an eight-minute presentation as both an organization leader and a patient advocate followed by a three-minute Q&A period during which she answered questions from the FDA panel.
Key themes of her presentation included:
The importance of not sacrificing quality, safety, or efficacy standards in biosimilar approvals by the FDA;
The anticipation among the patient advocate and provider communities about biosimilars offering new treatment choices and reduced costs;
The consideration of the “atypical” patient when establishing biosimilar regulatory guidelines;
The expectation that biosimilar policies must be science-based and patient-focused;
The importance of leaving treatment decisions, including the decision to switch medicines, to the individual and their healthcare team.
On September 21, 2018 submitted written comments to FDA as a follow-up to September 4th Public Hearing.
The purpose of the hearing and the request for comments, is to seek input on how the FDA can achieve the following goals:
Facilitate the efficient development of biosimilar and interchangeable products using state-of-the-art science;
Develop information resources, as well as scientific or regulatory tools, to streamline the development of biosimilar and interchangeable products;
Enhance the efficiency of FDA review of marketing applications for biosimilar and interchangeable products;
Provide additional scientific or regulatory clarity regarding FDA’s regulation of biological products, including FDA’s review and approval of marketing applications for biological products;
Increase healthcare provider, patient, and payer understanding of biological products, including biosimilar and interchangeable products; and
Support market competition by addressing attempts to game FDA requirements or otherwise delay market entry of competing biological products.
Courtesy of Creaky Joints / Global Healthy Living Foundation
A Patient's Guide to Understanding Biosimilars
Courtesy of the Biosimilars Roundtable-
Science-Based Resource on the Basic Facts About Biosimilars
LADA donates $100,000 to the Lupus Research Alliance!
The Lupus and Allied Diseases Association was delighted to present their annual research donation to the Lupus Research Alliance for $100,000 this year at the August 23rd Charity Golf Classic in support of innovative lupus research. "This brings us to a total of $491,000 that we have donated to support lupus research over the past 17 years, and an amazing $664,000 in lupus research funding overall since 1990," said President/CEO Kathleen Arntsen. She added that this was "not too shabby for an all volunteer, passion-driven, and patient-led organization run out of our home." Albert Roy from the Lupus Research Alliance thanked LADA for their amazing support, noting that this was an event that makes a tremendous difference in supporting lupus research, and that he is extremely proud of the work that has been accomplished in his home town of Verona, NY.
LADA Supports LFA Research Program
Lupus and Allied Diseases Association President & CEO
Kathleen Arntsen (left) presents our 2018 Annual Research
Donation of $100,000 to Lupus Foundation of America CEO
Sandra Raymond (right) on March 14, 2018 in front of LADA's
plaque on the LFA's donor wall. The grant is to fund pediatric
lupus and mesenchymal stem cell research. We have now
donated $125,000 to the LFA in the past two years for research.
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.