Takeda taps a doctor turned patient—and spread-the-word artist—for rare disease awareness campaign

Since snapping up rare disease biopharma Shire for $62 billion back in 2019, Takeda has been boosting its marketing might on conditions not in the mainstream.

As we head for Rare Disease day on Feb. 28, Takeda’s U.K. unit is ramping up awareness for rare diseases in general, tapping Shanali Perera for a new piece of art to highlight conditions so rare they are too often hidden from view.

Perera was a medical professional who had to retire from clinical practice when she developed vasculitis. This rare autoimmune disease causes inflammation of the blood vessels and can result in a range of symptoms, affecting a number of different organs. It can damage internal organs as well as mimic other diseases.

For Perera, the diagnosis came with a bitter irony, because she was in fact specializing in treating patients with the condition when she was hit with it herself, forcing her to eventually exit the profession.

“In my case, I was training as a rheumatologist when I first started to experience symptoms, so it was a very strange experience for me to personally be going through the journey of the condition I was specializing in,” she said.

“I was treating patients with vasculitis and seeing their everyday struggles," she said. "And suddenly I was living it.”

The condition affected her hand function and mobility, so she turned to a digital app to start drawing. “By drawing what my pain looked like, it helped me to understand what was going on, how it affected me, how I perceived my pain and how it impacted my lifestyle,” she said.

The Takeda-commissioned artwork comes in the form of a short video, with lots of colored circles focusing in and out, before forming a woman with her knees drawn in, hand on head. It conveys how so many individual parts can form one larger entity while depicting Perera's own difficult journey.

This piece is the first stage of Perera’s work for Takeda, the company said. It aims to illustrate the initial experience of noticing symptoms of rare disease and the journey to diagnosis.

In the coming weeks, the company will release stages two and three, which depict life during and after diagnosis. “We hope to be able to take the artwork from phase 1 and Shanali’s final piece on the road and display it in hospitals during the summer,” Takeda said in a statement to Fierce Pharma Marketing, but added that the plan depends on COVID conditions.

Takeda said it also plans to feature experiences of more doctors personally affected by rare disease “in the coming weeks and months.”

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This latest work forms part of Takeda’s so-called “I Am Number 17” disease awareness campaign, of which Perera is an ambassador. The campaign launched back in January 2020, shortly after the Shire acquisition.

I Am Number 17 drills down into the Takeda statistic that 1 in 17 people in the U.K. will be affected by a rare disease at some point in their lives.

The thrust of this campaign is to get people to visit the campaign website, which has a link to an online training program called Rare Disease 101 that's run by the charity Medics 4 Rare Disease (M4RD).

This is aimed at medical professionals with little prior knowledge of rare diseases and covers the basic principles of what a rare disease is, what might raise suspicions of a rare disease diagnosis, challenges faced by those living with a rare disease and ways to support them.

Takeda said it is not involved in creating or administering the program, but it “is working with [M4RD] and closely tracking how many HCPs have completed the training.”

While neither Takeda nor the charity promote any drug brands, the hope of these campaigns is that greater awareness of rare diseases among doctors and patients will help spur diagnosis, and increased diagnosis will prompt more prescriptions for rare disease treatments.

Because direct-to-consumer advertising is not legal in Europe or the U.K., unbranded awareness campaigns are common tools for drugmakers looking to get the word out.