BioMarin is raising awareness of phenylketonuria (PKU) through TikTok and its new video podcast, “Why Do I Pheel This Way?,” hosted by two young people living with the disease.
The three-part podcast series features co-hosts Connor, 20, and Londyn, 15, sharing about their daily life with PKU and how they navigate daily routines, maintaining a social life and participating on sports teams. Interspersed with games like “protein pop quiz” and expert interviews with clinical psychologist Mina Nguyen-Driver, the podcast series looks to shine a light on young people living with the rare metabolic disease and bring together an underrepresented community.
“While this condition has been a big part of our lives, we don’t always hear people of our age talking about their experiences of living with PKU,” Connor says in the first episode of the podcast series.
“So we’re sharing ours,” Londyn adds.
The podcast series comes with a dedicated TikTok page, where BioMarin has amassed millions of views on the clips.
The company markets two PKU therapies, Kuvan and the newer Palynziq, and has worked in the disease area for more than 20 years, Chief Corporate Affairs and Patient Advocacy Officer Marni Kottle said in an interview with Fierce Pharma Marketing.
PKU is typically diagnosed at birth, but adolescence can mark a “big transition” as patients begin living more independently and managing their restricted diet and protein intake on their own, Kottle said. The disease prevents the body from properly breaking down phenylalanine, an amino acid found in many high-protein foods. If untreated or poorly managed, PKU can cause long-term neurological damage due to a dangerous buildup of phenylalanine.
“This is a serious condition, and that moment in the journey that a person has of going from being sort of a child to an adult is a unique one, and it's particularly unique for PKU,” she noted.
Londyn and Connor, who BioMarin met with at a listening session to hear from young adult patients, are able to offer “real-life examples” that other patients wanted to hear as opposed to the standard “scientists and doctors telling them things,” the executive explained.
“It’s a condition that can feel isolating,” Kottle said, noting that the company’s goal for its podcast was to help young adults and adolescents “understand that there are many other people out there that have the same lived experience that they do.”
Bringing the podcast to TikTok was a natural next step, as the social media platform is a place where teens and young adults typically turn to consume information. So far, the feedback has been “really positive,” according to Kottle, with “hundreds of new followers following this campaign.”
Podcasts are gaining ground as an important marketing tool, with several pharma companies embracing the format to raise disease awareness and support patient advocacy. Pfizer’s “Science Will Win” is on its sixth season, while ViiV Healthcare’s “Love In Gravity” took a cinematic approach with its six-episode series. TikTok, for its part, is often used to garner virality for important topics such as COVID-19 vaccines.