A Rockstar, Big Pharma, And an Advocacy Group Unite!

March 17, 2017

Missing out on important life events is par for the course in many chronic illnesses. Patients are sometimes forced to bail on family and friends.

But what if you had to bail on tens of thousands of people?

That was the prospect Dan Reynolds faced several years ago, hours out from a major concert in Leeds, England.

“I had kept it to myself,” Reynolds told MedCity News during an interview in Los Angeles. “I don’t know if it was because I felt ashamed of having a disease or just that I’m a private person. I didn’t want to share it with people”

Reynolds’ band Imagine Dragons shot to fame in 2012 with the release of Night Visions, which debuted at No.2 on the Billboard Top 200 Albums chart. According to Fuse, it was the most streamed album on Spotify worldwide in 2013. The second single, Radioactive, was the most streamed song and won a Grammy award for Best Rock Performance in 2014. It now has close to 650 million views on YouTube.

Unfortunately, the rise of the band coincided with the progression of Reynold’s disease, ankylosing spondylitis. He had experienced transient pain during high school, he said, which doctors attributed to sports injuries.

“When I got into my twenties, specifically when I was 23, is really when the pain started to be so overwhelming that I started to lose mobility,” Reynolds recalled.

Ankylosing spondylitis (AS) is a form of arthritis that typically begins between the ages of 17 and 45. While it classicly affects the spine, inflammation and pain in the pelvis, neck, intestine, eyes, heels and various larger joints is also common. Executive director of the Spondylitis Association of America Richard Howard describes it as “auto-inflammatory or immune-mediated,” though the precise cause remains a mystery. 

With the success of Night Visions, Imagine Dragons embarked on an almost two-year concert tour, with 130 headline performances and 50 festivals.

Reynolds’ health was deteriorating. He was in pain and struggling to sleep at night. The band was forced to cancel performances. When he did make it on stage, Reynolds said he was rigid and unable to keep up with the energetic show.

After a particularly bad showing in San Diego, Reynolds sought out a rheumatologist and finally arrived at a correct diagnosis. It came after several years of MRIs, scans and misdiagnoses.

It was a major turning point, but not the end of the battle. AS cannot be cured, it cycles through flares of disease activity and remission. Patients can learn to manage it, but it doesn’t go away.

So there he was, several hours out from the concert in Leeds and in the midst of bad flare. It had triggered a deep arthritic pain throughout his hips and lower back.

While trying, those sorts of life moments often bring out the best in people. It forced Reynolds to confront the reality of his condition. There was no hiding anymore.

“I got on stage and I said, listen, I really wanted to cancel tonight. I’m in quite a bit of pain so the show might not be up to par, but this is why: I have ankylosing spondylitis,” he recalled, giving some background on the disease. 

The crowd responded with compassion and support. 

“I finally felt like, you know what, I’m going to be a voice for this and it’s going to be a part of me, it’s a part of my story,” he said.

This AS Life Live!

Shortly after revealing his diagnosis, Novartis Pharmaceuticals and the Spondylitis Association of America (SAA) approached Reynolds about becoming a spokesman for AS.

All three were working to raise awareness of the disease.

As a non-profit, SAA’s goal was to support patients as much as possible, while helping to educate the wider public. Novartis was involved with the cause and would also stand to benefit from increased visibility as a way to strengthen demand for its monoclonal antibody Cosentyx (secukinumab), approved for the treatment of psoriatic arthritis and ankylosing spondylitis.

For Reynolds, his major aim was to reduce the length of time it takes to get diagnosed — historically 7-10 years from the onset of symptoms. He also wanted to provide more resources and information for individuals who learn they have the disease.

Together the trio brainstormed “This AS Life,” which Reynolds described as a place for patients, family and friends to find information and a sense of community, so they don’t feel alone dealing with this “hidden disease.”

Everything about the website is modern and uplifting. That’s important because online patient forums often skew towards the negative. When patients are struggling, they go online. When they’re healthy, they’re off living their lives. The forums come to represent the low points of the disease.

The AS collaboration tackled that head on with an eight-episode series known as This AS Life Live! In short videos, Reynolds meets and interviews regular people living with AS; a chef, a doctor, a yoga instructor. All have different techniques and regimens for managing their illness on a day-to-day basis.

Continue reading at the source.

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