What Does the Future Hold For Lupus? Lupus News From ACR
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By Christele Felix.
Part of living with Lupus means staying up to date on Lupus and Lupus-related news. As part of my advocacy work, I participated in the November 2020 online edition of the Annual American College of Rheumatology conference (ACR), where Lupus was extensively talked about.
We first delved into a quick history lesson and I learned some interesting facts! Descriptions of Lupus can be traced as far back as Hippocrates around 400BC. Quality of life for people diagnosed with Lupus now is exponentially better than 70 years ago when about half of SLE patients with severe organ damage died within 2 years. Today, there is still quite a lot of work to be done, as we learned that one-third of patients accumulate a big amount of permanent organ damage within 5 years of diagnosis, and a very high percentage succumb after 10-25 years with the disease.
Before glucocorticoids, the survival rate in Lupus was abysmal. Improvements in research and medicine enable us today to better control inflammation, treat/prevent flares, prevent/reduce commodities, while also preventing damage from treatment. To this end, speakers reiterated how crucial adherence/adjustment to a disease management routine is for all patients, as well as routine screening including monitoring symptoms and lab testing. And since Lupus is a multisystem disease, it requires a multidisciplinary approach. As someone living with Lupus, I know all too well the amount of organization it takes to keep up with managing this disease. I was pleasantly surprised to discover that research is assessing how technology can help with managing issues like remembering to take meds and make/keep our various appointments. I hope to hear more about this in the future.
In any case, some of the best Lupus-related news to come out of ACR 2020 was the announcement of promising new therapies. Belimumab (Benlysta) was the first treatment for SLE in more than 50 years and has continued to show promise in post-market trials. Dr. Richard Furie presented results from the BLISS-LN studies which demonstrated that the drug also improves renal response, and shortly following the conference Belimumab was officially approved for Lupus Nephritis, a timely win! Some exciting findings from clinical trials for voclosporin (Lupkynis), a calcineurin inhibitor, were also announced! Voclosporin improved kidney functions and reduced protein in the urine. In fact, in late January 2021, The drug was approved as the first oral treatment for LN. Researchers also reported that clinical trials were underway for more potential treatments, namely Obinutuzumab and Anifrolumab. This is a very exciting time. Rheumatologists are very optimistic about the future, and as a Lupus patient, so am I!
Along with needing more treatments, there was a lot of focus on the continuing issue of medication non-adherence in chronic disease patients, including those with Lupus, and its effect on health outcomes. Talks at ACR focused on ways to improve medication adherence, like collaborative conversation and shared decision-making between the patient and care team. Another very important aspect that was brought up, and which I am very passionate about, is the topic of patient education, especially before starting treatment, including benefits vs risks of treatment options, and emphasizing the pressing urgency of treating immediately to avoid short-term and long-term organ damage. Patients should be educated on disease monitoring and self-management, tools that can influence their quality of life. Improving medication adherence requires our engagement, empowerment, knowledge-building. Additionally, other barriers to adherence (for example, access, cultural/lifestyle, other challenges) should be acknowledged and addressed. When I was diagnosed at 18, remembering to take my meds was a huge challenge for me, especially the evening dose. Because of our open communication, I was able to explain the situation to my rheumatologist, and since my dosage wasn’t too high, we decided that I could take all my meds at once. This simple change made it easier to fit my treatment into my daily routine.
The future looks brighter today than it was when I was diagnosed 14 years ago. As I was just entering adulthood, with all my dreams and goals, and all my bustling energy, this disease knocked me off my feet and forced me to slow down. After a few tries and fighting through various flares (attacking my kidneys, lungs, heart, GI tract, peripheral nervous system, to name a few), my care team and I established a treatment goal and came up with a plan to get me there. During my journey, I have participated in a few clinical trials and other clinical research projects aimed at improving the way we care for Lupus patients. Research projects indicate to me the willingness to try to untangle the complexities of Lupus and improve the lives of people living with this disease. The collaboration between the medical and research community collaborates and patients are crucial to this goal. New research means new treatments, and new treatments mean more opportunities to control Lupus and enjoy fulfilling lives. In being involved in research, we as patients can take part in the process of improving healthcare. By participating in research, we can help ensure that new and better treatments are available for us. By educating ourselves and speaking up about our lived experience, we can help the medical community understand what matters to Lupus patients and what we want from our care and treatments.