Horizon Therapeutics is not letting up on its marketing push for the vision-robbing rare disease neuromyelitis optica spectrum disorder: After tapping Doug the Pug last month for a broader awareness campaign, it’s back at it, this time with some real flavor.
The pharma has now teamed up with Christine Ha, the first blind contestant and winner of "MasterChef," to talk about her journey with the rare inflammatory disease, also known as NMOSD, which most often affects the optic nerves and spinal cord and can cause blindness.
Horizon, which grabbed an FDA approval for its NMOSD drug Uplizna in June 2020, is working alongside Ha—and with the Guthy-Jackson Charitable Foundation, Siegel Rare Neuroimmune Association and The Sumaira Foundation—on an initiative called “NMOSD Won’t Stop Me,” which encourages people living with the disease and their care partners to share their stories.
Ha, winner of the third season of "MasterChef," was diagnosed with NMSOD more than 20 years ago. The initiative runs in March, the disease's designated awareness month. An accompanying video with Ha talking about her life, diagnosis and how she lives with the condition today was also released.
“NMOSD is a part of me, but it’s not all of me—I’m also a chef, a writer, an entrepreneur, Vietnamese-American and many other things,” Ha said in a release. “I’m excited to be part of this initiative and to hear how others living with NMOSD define themselves, outside of the condition.”
Patients who submit their stories for the campaign will receive Ha’s cookbook, "Recipes from My Home Kitchen," and the chance to connect with Ha and others living with NMOSD during a Facebook Live event and virtual cooking class.
Stories can be submitted at www.NMOSDWontStopMe.com by March 31. A spokesperson for Horizon said the company is accepting written essays, video recordings and audio recordings—and some winners could also meet Ha.
The company may tap the essays for further insights into the disease community. “It’s still early in the campaign, but we do hope to find ways to continue to provide resources and engage with people who submit stories in March and beyond,” Horizon said.
Uplizna made $61 million last year and brought in $25.8 million in the fourth quarter. It is also in phase 3 trials for myasthenia gravis, another rare condition.
The drug competes with AstraZeneca’s Soliris, the jewel in the crown of its $39 billion Alexion buyout deal inked last year. Soliris was the first drug approved for NMOSD, winning its FDA green light back in 2019. Soliris makes $4 billion a year all told, though it has several other rare disease approvals, including myasthenia gravis. Roche also markets Enspryng for the condition, getting its approval in 2020.
When asked whether Ha uses Uplizna for her condition, Horizon didn’t give a yes or no answer. “This campaign aims to raise awareness for NMOSD and not a specific treatment," the company said. "Christine has worked closely with her healthcare team to determine a treatment plan that is right for her, and we encourage all people living with NMOSD to do the same.”
The Ha campaign announcement comes just a few weeks after Horizon launched another, separate marketing campaign about rare diseases in general, and Ewing sarcoma specifically, using a so-called “dog influencer” in Doug the Pug.
“There can often be a long road to an accurate NMOSD diagnosis, and Christine has underscored the importance of education and self-advocacy to find answers," said Kristina Patterson, M.D., Ph.D., medical director, neuroimmunology, Horizon, in a statement. "We hope this initiative allows people living with NMOSD to learn from one another, and ultimately helps more people find answers.”