Findings from a new study of more than 1,300 people with lupus show that several barriers to care can impact a lupus diagnosis. The study, conducted by the Lupus Foundation of America in partnership with Exagen Inc. (NASDAQ: XGN) was presented recently at the 2021 Lupus 21st Century Conference.
Respondents faced many healthcare challenges from the time they first saw a doctor for their symptoms. Healthcare-related challenges associated with delayed diagnosis included:
Overall, more than half (51%) reported long wait times before seeing a specialist; those with delayed diagnosis (5 or more years) reported this problem in higher numbers (58%) than those who were diagnosed in less than a year (39%).
Almost a third (31%) of all respondents reported that out-of-pocket costs were too high; those with a delayed diagnosis also reported this in higher numbers (36%) than those diagnosed within a year (23%).
Overall, 30% of all respondents noted that there were not enough doctors nearby to treat lupus; 32% with a delayed diagnosis reported this while 25% of those diagnosed in less than a year did the same.
Other barriers associated with delayed lupus diagnosis and care included insurance not covering the costs of needed services and long wait times to receive an appointment with primary care providers.
“People with lupus need access to the care they need to receive an accurate diagnosis and improve health outcomes,” shared Stevan W. Gibson, President & CEO, Lupus Foundation of America. “Our study underlines the barriers that are faced by patients seeking critical medical care from health care providers for symptoms that could be lupus and shows the importance in working with the medical community to further practitioner education of lupus, availability of specialists such as rheumatologists, and working toward solutions to reduce out-of-pocket healthcare costs.”
The study also found that many respondents reported they were misdiagnosed, including with anxiety (32%), depression (30%), or fibromyalgia (23%), before their lupus diagnosis. Almost 22% were told nothing was wrong with them.
“Lupus can be difficult to diagnosis due to its diverse symptoms and impact on each individual. However, there is a lot we can do to help ensure an accurate lupus diagnosis and access to care,” added Donald Thomas, MD, author of The Lupus Encyclopedia. “This study helps further identify key barriers to lupus diagnosis and care, which is important to better understand how to overcome these barriers. We need to grow the specialty of rheumatology by mentoring young doctors to attract them to the field, continue to educate healthcare providers on identifying and diagnosing lupus patients at earlier stages of their illness, and ensure access to programs that help alleviate healthcare costs and access barriers for people with lupus.”
You can listen to the latest podcast featuring Dr. Jill Buyon, one of Lupus Science & Medicine’s Editors-in-Chief, who talks about highlights of ACR Convergence 2021, which was held virtually from November 3-9.
This year’s ACR Convergence 2021 (ACR21), the world’s premier annual rheumatology meeting of the American College of Rheumatology, offered an exciting flurry of cutting-edge lupus research discoveries, from treatment news to disease management updates. Lupus experts from around the globe, including health care professionals, drug developers and patient advocates convened from November 3 – 9 to share and discuss the latest findings in lupus research.
Several studies funded by the Lupus Foundation of America (LFA) were presented at the meeting, and our Inside Lupus Research team covered the conference. Read on for this year’s research highlights.
Treatment News
Encouraging advancements on several new and investigational drugs were shared at the meeting:
BIIB059 – Phase 2 study results revealed more promising news for this antibody treatment. The drug was associated with improved joint use in those with lupus-related arthritis. Nearly half (48.2%) of trial participants using the drug saw positive joint response over those taking the placebo treatment.
Iberdomide – A phase 2b study found the drug to be safe and well tolerated in people with systemic lupus erythematosus (SLE), with sustained clinical benefits up to week 52 of use.
Anifrolumab – After receiving approval by the U.S. Food and Drug Administration to treat adults with moderate to severe SLE, study results presented at ACR21 further underscore the therapy as an effective treatment for clinically distinct subgroups of SLE.
Barticitnib – This new investigational drug shows early promise as a treatment for SLE, targeting B-cell activity. B-cells are responsible for creating antibodies, including autoantibodies, and may play a role in the development and progression of autoimmune diseases like lupus.
This year’s annual Great Debate at ACR21 centered around potential first-line treatments for lupus nephritis (LN, lupus-related kidney disease): belimumab (Benlysta®) versus voclosporin (Lupkynis™). The question of which treatment to add first to standard therapy was a contested topic of discussion, with strong clinical evidence supporting the safety and effectiveness of both drugs. Ultimately, the debating researchers concluded there is use for both therapies in managing the diverse patient population living with LN.
In other important treatment news, low doses of hydroxychloroquine, used to reduce lupus disease activity and flares, was associated with increased risk of flares in a new study. Balancing the drug’s benefits with the risk of toxicity at higher doses is challenging but essential in order to discover optimal dosage.
Another study found that 10% of people with lupus were long-term users of opioids compared to just 1% of the comparison group. Long-term opioid use is rarely indicated for management of chronic pain, due to a lack of effectiveness and risk for developing drug dependency and co-occurring medical problems. Risk factors for long-term opioid use were duration of lupus disease and having a co-occurring mood disorder or fibromyalgia. Identifying alternative pain management therapies will continue to be a priority in lupus treatment research and patient care.
Looking ahead to future drug research, data presented at ACR21 suggests that the COVID-19 pandemic opened opportunities for the benefits of using telemedicine (TM) in clinical care. According to new survey data shared, the vast majority (more than 75%) of people with lupus report satisfaction with TM, and nearly all (92%) believe their physicians can address their concerns via TM. Meanwhile, clinical trials during the COVID-19 pandemic experienced significant delays with only 39% of trials able to continue as intended. Further data suggests that the future will require more adaptable clinical trial designs that are flexible to individual needs in order to enhance drug response rate and participant retention.
Exciting Research from the Lupus Foundation of America
At the LFA, everything we do is focused on improving the quality of life for all people affected by lupus, including through awareness, education, care services and research efforts led and supported by our organization. For ACR21, we shared important program evaluation findings on SELF (Strategies to Embrace Living with Lupus Fearlessly), a new online program developed under a cooperative agreement with the U.S. Centers for Disease Control and Prevention, that’s designed to offer personalized support for lupus warriors looking to build their arsenal of self-management skills.
Our abstract presented at ACR21 assessed SELF’s performance in a program evaluation pilot and revealed key barriers to enrollment and retention that have since led to strategic program changes aimed at improving the sign-up and onboarding process. Findings from the SELF program evaluation also underscored the importance of developing and disseminating effective self-management education – only 1 in 5 program participants at baseline had mastered the majority of skills needed to manage lupus. The updated SELF program will be launched and made widely available in early 2022.
Additionally, Dr. Jane Salmon, Collette Kean Research Professor at Hospital for Special Surgery, presented results of LFA-funded research to develop an algorithm to predict adverse pregnancy outcomes (APO) in high-risk pregnancies in patients with antiphospholipid syndrome (APS). Her study explored the performance of novel and increasingly popular machine learning (ML) approaches for predicting APO, which affects nearly 20% of pregnancies in women with lupus.
And, lead investigator, Dr. Gary S. Gilkeson of the Medical University of South Carolina (MUSC) presented two abstracts on findings from an LFA-funded Phase II Mesenchymal Stromal Cell (MSC) trial. His findings suggest that the use of MSCs in the treatment of lupus presents minimal safety concerns. His research also shows that there is a significant amount of variation in subtypes of immune-system cells known as B-cells within the stromal cells of ethnically and geographically diverse subjects with refractory lupus (lupus that is resistant to treatment). Further studies in this area could reveal a connection between specific B-cell subtypes and distinct forms of lupus or help predict individuals’ responses to treatment based on their personal B-cell profile.
Finally, through the LFA’s partnership with the Childhood Arthritis and Rheumatology Research Alliance (CARRA), we helped fund a study to better understand the practices and preferences of North American pediatricians treating children with LN. The study revealed that, while they’re generally prescribing lower doses of the immunosuppressive drug cyclophosphamide than they were a decade ago, many physicians remain largely unfamiliar with the European protocol, which recommends lower doses of the drug compared to the high-dose cyclophosphamide protocol from the National Institutes of Health (NIH).
Health Disparities in Lupus
Scientific evidence continues to reveal striking health disparities within the lupus community. New data presented at the meeting show that Black and Hispanic lupus warriors have more severe COVID-19 outcomes, such as hospitalization, need for mechanical ventilation, and death, compared to other races and ethnicities.
And, two new studies suggest that, while lupus care and outcomes may be improving overall, disparities along racial and ethnic lines still persist. First, research presented by Joyce C. Chang, MD, a 2018 LFA Gary S. Gilkeson Career Development Award winner, showed that hospitalized Black children with lupus are significantly more likely to experience kidney failure, or require dialysis or kidney transplant than hospitalized white children with lupus, despite the fact that these serious outcomes have decreased overall since 2006.
Furthermore, new research shows that while the rate of hospitalizations for lupus flares has declined over the last 20 years overall, a disproportionate number of those hospitalized are Black. The latest findings urgently highlight the need for more strategically targeted efforts to improve access to care, treatment and disease management education in these communities.
The Lupus Foundation of America is proud to be a part of the collective, global fight against lupus, developing tools and resources to help today’s lupus warriors overcome the challenges they face – from managing the disease to addressing healthcare disparities – while working to find new treatments and ultimately a cure. Continue to follow Inside Lupus Research for breaking news and important updates and see you at #ACR22!
New research associates an imbalance of quinolinic acid relative to kynurenic acid with poor cognitive performance in people with lupus. Quinolinic acid and kynurenic acid are byproducts of one of the body’s cellular energy pathways. The disruption of this pathway can create an imbalance of quinolinic acid relative to kynurenic acid. This imbalance can potentially damage neurons, leading to cognitive dysfunction. People with lupus exhibited elevated quinolinic acid relative to kynurenic acid compared to healthy people.
Researchers examined a group of people, comprised of 74 who were healthy and 74 who had lupus. They measured blood levels of substances produced in the cellular energy pathway, including quinolinic and kynurenic acid. Each participant was also given a series of cognitive tests along with assessments of pain and mood.
Those with lupus and elevated quinolinic acid relative to kynurenic acid performed worse on the majority of cognitive tests, and had higher depression scores, than healthy people. Elevated quinolinic acid relative to kynurenic acid was associated with poor cognitive performance in people with lupus.
“Cognitive dysfunction is common in lupus patients and potentially devastating, yet therapies are lacking. We report a novel finding that an imbalance of quinolinic acid relative to kynurenic acid associated with poor cognitive performance in lupus. These results suggest a potential therapeutic target that warrants further study,” says Dr. Erik Anderson, a Gary S. Gilkeson Career Development Awardee with the Lupus Foundation of America and primary investigator of the study.
The discovery of an association between an imbalance of quinolinic acid relative to kynurenic acid and poor cognitive performance will help guide further exploration in this area. Continued study may lead to new areas to target for lupus therapy.
Learn more about coping with the cognitive symptoms of lupus. The Lupus Foundation of America supported Dr. Anderson’s lupus research through its Gary S. Gilkeson Career Development Award. Click here to learn more about the Gary S. Gilkeson Career Development Award and here to learn more about Dr. Anderson’s work.
