The President of the United States recently mentioned that his late son, Beau Biden, lived with the same disease I have: ankylosing spondylitis (AS).
When I was diagnosed with ankylosing spondylitis (also known as axial spondyloarthritis, or axSpA) in 2013, I had only ever met one person with the disease: my dad. Health information websites told me the disease was rare, and I believed it (I learned later that isn’t true). When I told people about my diagnosis I first had to teach them how to pronounce it — ank-ih-low-sing spon-dih-lite-iss — then I had to explain it, and finally I had to prove I had it. Even to doctors.
Educating people about AS was only part of it; even worse, I also had to live with the disease. My life was dominated by constant debilitating pain, lack of sleep, extreme fatigue, infections, trouble breathing, and the hell of navigating the medical system.
I was a former college athlete, then suddenly I was barely able to care for myself. My life completely flipped upside down in mere months.
In the beginning, I felt isolated and hopeless with no promise of a cure or, more importantly, public understanding of what my body was doing to itself. My future was uncertain; there was no prognosis because spondylitis is unpredictable. I couldn’t imagine my life in five, 10, 30 years.
Without a prognosis, I had no timeline.
Without a timeline, I couldn’t plan.
Without a plan, I struggled to find meaning.
I began sharing what I was going through. I was desperate for people to acknowledge the hell that was this disease; I needed people to see how it had ruined my life. Over time I realized that telling my story gave others permission to tell their stories, too. And I learned I could use my story to affect larger issues in health care, disability, research, and policy.
The disease that had ruined my life also planted the seeds for something else: harnessing the tragedy and converting it into meaning and hope.
The Power of Sharing Your Story
If spondylitis was going to try to take me down, at least I would take it down with me by exposing it and making others aware of it. I made a life goal to make spondyloarthritis a household name. After a viral blog post in 2015, I was catapulted into life as a small-time public figure, all the while hoping that one day I could retire from my own story when I achieved my goal.
In late 2015, the lead singer of the band Imagine Dragons, Dan Reynolds, announced he had AS. Other public figures were already public about the disease, or later announced they were living with it: Mick Mars, Zach Kornfeld, Rob Wicall, Tanya Harrison, Alicia Graf Mack, Rev. Dr. William J. Barber II, and more. As more people in the limelight talked about spondylitis, and as the whole AS community became more vocal, it meant more awareness, and less isolation. It meant an easier time not only teaching people how to pronounce the disease, but how to offer support and understanding to those living with it.
Each new story nudged the spondylitis community outward, ever-so-slightly narrowing the nonsensical gap between awareness of spondylitis and its prevalence. Each new story had the potential to lead to the next level: more stories meant more awareness, which led to earlier diagnoses, which led to more stories, which led to more research, to more stories, to more treatment options, to more stories, and so on.
Momentum built on momentum.
The Ultimate Awareness
Eight years after my diagnosis, this momentum hasn’t yet translated to significant change — there’s still no cure, and I still have AS symptoms. But after eight years of advocacy, I have noticed my work has gotten easier in some ways. Now it’s less about how to pronounce the name of the disease and more about how the disease works and what needs to change for more awareness, earlier diagnosis, and better treatments.
That said, nothing prepared me for the sitting President of the United States to casually mention ankylosing spondylitis on May 28, 2021 during a speech to service members and their families.
It’s hard to explain the feeling of knowing that the President of the United States knows what my disease is, has a deeply personal connection to it, and can even pronounce it correctly — my disease that so many have never heard of, despite it affecting some 3.2 million Americans: That’s more than multiple sclerosis (MS), rheumatoid arthritis (RA), and amyotrophic lateral sclerosis (ALS) combined, according to the Spondylitis Association of America (SAA).
The easiest way to explain it is hope.
When I heard President Biden say the name of my disease, I felt hope that one day he would declare a war on rheumatic disease. I felt hope that he, and others in the position to do so, would say the name of my disease again and again until it became a household name. I felt hope that, one day, I could finally retire from my advocacy.
Clarification About a ‘Cure’
That said, misinformation about spondylitis is still rampant. I want to use this opportunity to interpret and explain some things President Biden said about spondylitis.
During his speech, President Biden said:
“But then he decided that — I kept on — he had contracted a — exposure to a virus in — when he was in Kosovo and in Turkey as a civilian. And he came back with a problem. But he kept going to Walter Reed. I couldn’t understand why he was — they finally found — it’s called ankylosing spondylitis. They finally found a cure. It prevented him from having what they call ‘bamboo spine.’ But he kept going back. I couldn’t understand why. I thought I knew why, but, Gov, he went back because he was trying to get an exemption to be able to join the United States Army.”
President Biden’s comments about Beau being cured are inaccurate and most likely the result of confusing and limited information. There is no cure for spondylitis, although there are treatments to help manage the condition. My curiosity about where the President might have gotten that information led to me digging into Beau’s story, hoping to find an explanation.
In Hunter Biden’s memoir, Beautiful Things, he writes about Beau returning from Kosovo with a virus that seemed to trigger his AS diagnosis in 2001: “[…] ankylosing spondylitis, commonly known as bamboo spine, a horrific genetic disorder that causes bones in the back to freeze up, like acute arthritis. Beau was treated with Humira, then an experimental drug.”
Humira belongs to a class of drugs called biologics, which are made from living organisms (which is different from other drugs, which are made chemically). They target processes in the body that cause inflammation, which is the central problem in inflammatory rheumatic diseases like spondylitis. Controlling inflammation means managing the disease and slowing it down.
In 2001, when Beau Biden was diagnosed with ankylosing spondylitis, biologics were only just beginning to be investigated as a treatment for spondylitis. In 2003, Enbrel was the first biologic to be approved by the FDA for the treatment of spondylitis. Humira, the drug used experimentally to treat Beau in 2001, wouldn’t be approved for the treatment of spondylitis until 2006.
When President Biden mentioned a cure being found for Beau, I suspect he believed that his biologic prevented “bamboo spine” (outdated language that refers to fusion of the spine from bony spurs), which seemed like a cure. It’s more likely that the medication was effective enough for Beau that it controlled his symptoms and helped halt his disease’s progression well enough to cause remission. In spondylitis, remission does not mean the disease has disappeared, only that it is well-controlled.
It’s also important to know that spondylitis is a systemic disease; it can impact organs in addition to other joints. Preventing “bamboo spine” is only one aspect of treatment for the disease. Spondylitis is a lifelong condition, and many people never achieve remission, even temporarily.
Including me. After eight years of treatment, I have never once been symptom-free. I don’t know what it means to be without pain, and my spine is slowly deteriorating while simultaneously growing new, fragile bone spurs, inching me more toward the “bamboo spine” that Beau Biden managed to avoid.
Advocacy Moments That Matter
In early 2021, when my Congresswoman, Doris Matsui (D-CA) introduced House Resolution 135, which would declare May Spondyloarthritis Awareness Month, I was excited about the thought that President Biden might one day sign it as a Presidential Proclamation.
I never imagined that President Biden might one day sign a Presidential Proclamation for a disease that his own son lived with.
There are moments in every chronic disease advocate’s career that change everything. President Biden’s mention of spondylitis feels like one of those moments to me. I don’t have the words to express how hopeful and relieved I am to know that the President of the United States has a personal connection to the disease that changed my life forever. And I can’t help but dream of meeting President Biden one day and having a conversation about the disease that his son and I share.
It feels like that life goal of making spondylitis a household name is within reach for the first time.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
Remarks by President Biden Addressing Service Members and their Families. May 28, 2021. https://www.whitehouse.gov/briefing-room/speeches-remarks/2021/05/28/remarks-by-president-biden-addressing-service-members-and-their-families/.
Spondy What? Spondylitis Association of America. https://www.spondylitis.org.