Awareness Is Just the Beginning

 May is Vasculitis Awareness Month. For patients, their families, the physicians, and other clinicians who treat them, and the researchers who seek to find answers and cures, it is a time to step up and speak out about this condition and the toll it takes on more than 100,000 patients in the US. Vasculitis is complicated, it’s not just one condition, but rather a grouping of rare disorders. Vasculitis causes the immune system to attack healthy blood vessels, narrowing and weakening them and causing inflammation and even organ damage. Diagnosis can be difficult and delayed as symptoms can occur throughout the body, ranging from fever and joint pain to rashes, numbness, respiratory problems, eye conditions, and even digestive problems. There are over 20 recognized forms of vasculitis, but only 11 have a current FDA-approved treatment to relieve symptoms, and there is no cure for any form of vasculitis.

It comes as no surprise that the impact of these complex, painful, and dangerous conditions is not just debilitating but also life-altering. Becoming ill, unfortunately, is just the beginning. A major research study of vasculitis patients* found that roughly 73% were initially misdiagnosed and that 60% had to visit an emergency room at least once before getting a diagnosis of their disease. The median time from onset of symptoms to diagnosis was a grueling seven months. Another complication is that many patients who do not have access to specialized care, or who are without insurance coverage, must wait even longer for diagnosis while their conditions deteriorate. Even vasculitis patients who have health insurance can face significant insurance-related access challenges, requiring lengthy prior authorizations and utilization management steps.

Like all patient communities, we are grateful for the few available treatments that have helped stabilize patients, but vasculitis patients, like so many others with various types of autoimmune disease, still face grave threats. There are far too few targeted medicines to treat vasculitis and other autoimmune conditions aside from steroids. While steroids are helpful, they can also increase the patient’s risk of developing infections, hypertension, diabetes, osteoporosis, glaucoma, and many other serious ailments. We desperately need viable alternatives.

Research and Innovation are Essential! 

The Vasculitis Foundation supports efforts to:

Increase Research Funding and Incentivize Private Investment in New Treatments and Cures

As we have noted, although steroids reduce some symptoms and help some patients manage their condition, the long-range effects often trigger other illnesses that not only create more suffering but also accumulate staggering costs. We need treatments, and we desperately want cures.

Reduce Access and Affordability Barriers to Care

We need to reduce insurance barriers and practices that make it harder for patients to access the treatments that can reduce suffering and save lives.

Educate, Train and Retain More Healthcare Providers

The practice of medicine is facing increasingly difficult challenges as more medical professionals are retiring early and concerns grow about having too few healthcare workers and physicians to replace them. Rural areas still face severe shortages in healthcare access, while in urban and suburban areas, waiting times for appointments grow as the number of providers diminishes.

As executive director of the Vasculitis Foundation, the leading organization in the world dedicated to diagnosing, treating, and curing all forms of vasculitis, I hear each day of the struggle patients face and their concerns about the future. As a professional who has worked in the patient advocacy community for over two decades, I know the burden of having a rare disease and dealing with its physical and financial costs is felt by patients and families throughout our country and throughout the world. We believe change can happen. We believe research is vital. We believe increasing awareness is the starting point.

Joyce A. Kullman is the Executive Director of Vasculitis Foundation.

https://www.realclearhealth.com/articles/2026/05/27/awareness_is_just_the_beginning_1185200.html