PharmaEssentia has partnered with MPN Advocacy & Education International to tell the stories of people with polycythemia vera (PV), creating four videos of patients talking about the events before, during and after being diagnosed with the rare blood cancer.
The U.S. subsidiary of PharmaEssentia, a Taiwan-based biopharma company, won FDA approval for a PV drug, Besremi, almost two years ago and began its branded “What Counts” campaign early this year. The latest initiative is PV&ME, an unbranded program designed to raise awareness of PV and equip patients to advocate for themselves. In a set of four- to five-minute videos, PV patients discuss their experiences.
Buzz, a man who once turned up at work despite being hit by a truck while biking in, got diagnosed after years of symptoms when fatigue forced him to miss work for the first time ever. In the video, Buzz talks about how he had PV symptoms years earlier but “got nothing but shoulder shrugs” from doctors. After a decade of trying to manage the symptoms himself, Buzz tried a doctor again and was diagnosed.
“At that point in time, I've been dealing with these progressively worsening symptoms for a decade, thinking it's all in my head,” Buzz said. He set out to find out more about PV so he could find the right physician, reflecting his belief that “advocating for yourself” is key to identifying a doctor who can help.
Another video describes a very different path to diagnosis. Deb was “blindsided” when she went for an annual physical and learned that her blood counts were elevated. The test results prompted a referral to a hematologist and led to the PV diagnosis. By the time of the three-month follow-up visit, Deb had also been diagnosed with breast cancer. Looking back, Deb realized she may have had PV for many years.
“I remember frequently doing the ‘head nod’ driving home from work at the end of the day. I had a pretty full schedule … bringing kids back and forth to different events and such. But it just always seemed like I was a little off and always tired. No matter how much I slept, I never felt really great,” Deb said. Deb went on to channel her cancer experience into a new activity: writing and performing songs.
PharmaEssentia published the videos on the back of a first half of the year in which it continued to grow sales. Global net product sales hit (PDF) $92.9 million in 2022, the first year after Besremi was approved in the U.S., and PharmaEssentia reported (PDF) increased operating revenues over the first half of 2023. Besremi is a first-line therapy, whereas Incyte’s Jakafi is approved as a second-line treatment.