SEATTLE—At the first regional vasculitis patient conference ever held in the Pacific Northwest, a panoramic view of Mt. Rainier on a clear January morning set the tone for a day of optimistic talks about recent successes against the various forms of blood vessel inflammation. One attendee at the Jan. 12 conference, sponsored by the Vasculitis Foundation in partnership with the University of Washington’s Division of Rheumatology, noted it was hard to tell patients from caregivers among the 100-plus participants—a definite sign of progress.
The success of recently approved treatments, such as the monoclonal antibodies rituximab (Rituxan) and mepolizumab (Nucala), and encouraging trial results of drug candidates, such as Avacopan (CCX168), have provided ample reasons for optimism. “The future is bright, I think, for vasculitis in general,” said Gregory C. Gardner, MD, FACP, Gilliland-Henderson Professor in Rheumatology at the University of Washington.
Featured speaker Philip Seo, MD, MHS, associate professor of medicine and director of the Johns Hopkins Vasculitis Center in Baltimore (and physician editor of The Rheumatologist [TR]), said some newer drugs may even become, “The Tina Feys of vasculitis,” a cheeky reference to the highly successful former cast member of Saturday Night Live.
Nevertheless, the humor and sunshine were tempered by more sobering stories of patients struggling to reclaim their lives after lengthy medical odysseys. Throughout the day, audience members shared tales of having to shop around for doctors, not having their symptoms taken seriously, lacking patient advocates, having to navigate a bewildering healthcare system alone, waiting years to receive the correct diagnosis, and even being forced to use spreadsheets to manage their own complex care.