To help raise awareness of lupus nephritis on World Lupus Day, Aurinia Pharmaceuticals announced some new efforts dedicated to giving patients with the disease an opportunity to connect and share their experiences.
The company is collaborating with The Mighty, a digital health community that features stories written by people facing a variety of health challenges and disabilities.
Aurinia connected patient advocate Gabrielle Davis with The Mighty to share her story, titled “When Marriage Works Harder Because Your Kidneys Don’t.” The story, in which Davis talks about living with lupus and how she deals with daily struggles, will be publicly available through the month of May. It also includes links to patient resources.
In addition to Davis’ story, Aurinia is supporting a homepage within The Mighty specifically dedicated to lupus, where people in the disease community can find additional links to more resources and stories.
“Aurinia is proud to join the global lupus community to recognize and support this important initiative. We wanted to share Gabrielle’s inspiring story of the challenges of living with lupus nephritis on World Lupus Day to help shine a light on the nearly five million people worldwide who suffer from SLE,” Richard M. Glickman, CEO of Aurinia, said in a press release. “It is important for us to celebrate her determination to live her best life as well as show the courage and dedication patients living with [lupus nephritis] demonstrate each day.”
This collaboration follows Aurinia’s recent launch of ALL IN, an educational website developed for the lupus nephritis community. In recognition of World Lupus Day and Lupus Awareness Month in May, the company added a new interactive tool that gives lupus nephritis patients an opportunity to create and tell their story. For those people who build and share their story on the site, Aurinia is donating funds to support lupus advocacy.
World Lupus Day, which took place May 10, is sponsored by the World Lupus Foundation, a coalition of lupus patient organizations worldwide. The day serves to call attention to lupus’ impact on the global community and to the needs of the million of patients who deal with the disease every day.
Lupus nephritis, one of the most serious manifestations of systemic lupus erythematosus (SLE), is a condition that arises when lupus autoantibodies target the kidneys, causing debilitating inflammation. If poorly managed, the condition — which affects nearly half of lupus patients — can lead to end-stage renal disease. In such cases, patients require dialysis or, eventually, a kidney transplant.
Aurinia is currently developing voclosporin as a potential treatment for lupus nephritis, focal segmental glomerulosclerosis – a condition characterized by scarring of the kidney – and dry eye syndrome. Voclosporin inhibits calcineurin, a protein that activates T-cells, halting the damaging effects of excess inflammation.
In the trial, the combination was found to eliminate kidney inflammation in twice as many patients as those who received standard of care alone. The combo also lengthened the time it took for lupus nephritis to re-emerge. It was also found to be safe and well-tolerated, with no reports of unexpected safety concerns.
These findings were presented in June 2017 at the European Congress of Rheumatology in Madrid.