By Filsane Haji
A few weeks ago, I attended the Digital Lupus Advocacy Summit hosted by the Lupus Foundation of America (LFA). It’s a free, annual conference that aims to share the latest information on lupus research, resources, and services. Importantly, it’s also an opportunity for experts, campaigners and patients to connect, and is a key part of a comprehensive advocacy program that has helped the LFA generate hundreds of millions of dollars in funding for lupus research and education in the past 5 years alone!
Advocacy is crucial for improving the lives of people living with lupus, as it promotes better funding for research and tools for improving care. This summit stood out from many conferences I’ve attended, where the focus was on showcasing scientific research and new technologies. It was conducted with patients – lupus warriors – and the whole community in mind; their voices, questions and views were welcomed, and they were active participants in discussions. Engaging and empowering those living with a disease by centring them in their care is championed by us here at VISFO, so I was happy to see this approach being promoted by another organisation.
It started on a Monday with a focus on current research. One of the topics discussed was health inequality in lupus care. Lupus disproportionately affects women (90%!) and marginalised racial or ethnic groups. Lupus nephritis, a severe kidney disease, is also diagnosed at higher rates in marginalised groups compared to white populations. The speaker asked, why do these disparities exist?
To start, social, economic and public policies have a huge impact on health outcomes. People may face financial difficulties, unemployment, lack of insurance coverage, low health literacy, and geographical barriers that limit access to quality care. Sadly, other previously overlooked factors causing disparities are a lack of social support and decreased trust in medical professionals in groups who were vulnerable to discrimination in healthcare. It was an eye-opening and moving discussion on the extent and impact of health inequity on the lives of people living with lupus.
On the same note, there was a very informative session on clinical trial diversity. To test and better evaluate the safety and efficacy of clinical treatments, it’s important to conduct studies that reflect the diverse community of lupus warriors, but in the US, African Americans make up 43% of lupus cases but only 14% of clinical trial participants. This limited representation of some population groups is a concern, and it’s important this is addressed to reduce poor health outcomes. So, the speaker discussed some strategies that may tackle barriers to recruitment through the new IMPACT+ project. This project plans to increase the enrolment and retention of underrepresented patients in lupus clinical trials. Connecting people with lupus to clinical trial sites and collaborating with a diverse group of researchers and healthcare professionals trained to ensure that protocols are appropriate and culturally competent will help ensure access to and improve lupus treatments.
My favourite segment of the talk was hearing from a lupus warrior who shared his story of being diagnosed at age 16 in 1990 and all the issues he faced. One important part was the difficult diagnostic journey he experienced, as a man with lupus. He also reiterated the need for doctors to discuss clinical trials and the process with their patients, especially those from underserved populations. I found this topic familiar as it resonated with my own research into studies on lupus subtyping. This disease presents itself in various ways in terms of symptoms, organs affected and disease progression. Ancestry and genetic markers can even differ within populations, so it’s crucial to have a diverse representation within trial populations to gain a better understanding of lupus.
One of the most popular sessions brought to attention next-generation lupus treatments. There were representatives from organisations like AstraZeneca, GSK, Bristol-Myers Squibb, Horizon therapeutics and Aurinia Pharmaceuticals. They showcased newly approved therapies and current treatment trials. Targeted therapies and personalised medicine were leading themes, as they will be key to addressing the heterogeneity of lupus. The air of the talk was a hopeful one, with many reassurances that the future is bright. GSK shared their patient support platform ‘Us in Lupus’ and its features like disease activity tracking, appointment support etc. I was aware of this programme from working on our competitor analysis, as it’s relevant to the development of My Lupus Health.
The final session I attended was an open session providing answers, resources and support to participants, many of whom had lupus themselves, hosted by the LFA and its health education specialists. A new program called Strategies to Embrace Living with Lupus Fearlessly (SELF) was introduced. Its aim is to help people manage their symptoms, stress and medications, meeting with the user where they are on their lupus journey. It was insightful to hear what the program offers and how it empowers people to take better control of their disease and join support groups.
I found the summit to be enjoyable, informative and inspiring. I learned from the experts in research, healthcare and advocacy. I would recommend attending the next summit to anyone with an interest in autoimmune diseases.
My top 6 key takeaways are:
- Health inequalities have a big impact on the lupus community, but tangible solutions do exist
- The Digital Lupus Advocacy Summit provides support and educational resources on lupus care to participants
- Encouraging the voices of people living with lupus in presentations and interactive discussions provides valuable insights
- There has been significant progress in lupus research and the importance of diversity in trials is being addressed
- Lupus patients take their care very seriously and are passionate about overcoming the disease
- People living with lupus find empowerment through management tools and support programs.
1. Lupus Foundation of America. What role do sex and gender play in lupus? 2021. Available at: https://www.lupus.org/resources/what-role-do-sex-and-gender-play-in-lupus (accessed July 2022)
2. Lupus Foundation of America. African Americans and Lupus. 2013. Available at: https://www.lupus.org/s3fs-public/Doc%20-%20PDF/Ohio/African%20Americans%20and%20Lupus.pdf (accessed Jul 2022)
3. Maningding E, et al. Arthritis Care Res (Hoboken) 2020; 72:622–629.