CSL Behring is teaming up with renowned portrait photographer Rankin to launch “Portraits of Progress,” a project that charts 60 years in the fight against hemophilia.
CSL, which markets several drugs for the bleeding disorder and is on course to nab a game-changing gene therapy approval for hemophilia B this year, is thus putting photography into focus for its latest campaign.
Portraits of Progress showcases the stories and experiences of people living with hemophilia from the mid-twentieth century to today. The exhibition opens this month in New York City and is touring in the U.S. and Europe later in the year; it's Rankin's first live exhibition in the U.S. in three years.
Rankin takes visitors through the progress in hemophilia treatment, from identification of hemophilia A and B in the 1940s through treatment advances available today—plus ongoing research focused on gene therapies for the bleeding disorder.
The exhibition features portraits of hemophilia patients, caregivers and healthcare professionals shot by Rankin, along with personal stories, archival images and a timeline of key scientific discoveries.
Viewers are taken from life in the 1950s and 1960s, when life expectancy with the disease was less than 20 years, through to recombinant therapies in the 1990s and 2000s and up to today, with the prospect of a single-dose treatment that could be a cure.
An accompanying website and videos capture the patients' stories and their personal histories of living with the disease, as well as a behind-the-scenes look at the portraits being made.
The site does not mention CSL’s products or experimental work by name, but it does have information about drugs and gene therapies in general, with a large focus (and sign-up page) for gene therapy “updates” on the site.
“As a photographer, I've gravitated towards campaigns which can make a difference,” said Rankin in a statement. “Hemophilia is something I thought I understood, but I realized there was so much to learn. Listening to these exceptional stories and learning about the extraordinary journey of this community was a true education and privilege.
“I hope this exhibition will provide greater awareness and understanding of hemophilia, and the incredible people within this tight-knit community,” the photographer added.
“Rankin’s empathy and interest in rare diseases made him a natural partner of choice for this campaign,“ said Bob Lojewski, Senior Vice President and General Manager of North America Commercial Operations, CSL Behring.
“His striking portraits along with the compelling stories and perspectives from the community help to shine a spotlight on hemophilia and provide greater awareness and understanding of this rare disease.“
"When you listen to the stories of people within the hemophilia community, you hear about the difference in experiences over time due to advancements in education, support and treatments and their hope for the future. This inspired us to look at the history of hemophilia and the remarkable pace of progress in the understanding and treatment of this rare disease," Lojewski added.
Last month the FDA accepted CSL’s priority review application for a hemophilia B gene therapy, potentially fast-tracking the drug, which it nabbed through a deal with its original developer uniQure.
If approved, etranacogene dezaparvovec—an AAV-5 gene therapy candidate given as a one-time treatment—would be the first gene therapy option for patients with hemophilia B, a life-threatening degenerative disease.
It’s had a bumpy ride that included a clinical hold—and later, a lift—but with CSL, the path is finally getting smoother. The U.S.-European pharma also markets Afstyla for hemophilia A and Idelvion for hemophilia B.
The campaign, which has a lot of mentions about the prospect of gene therapies in hemophilia, is clearly an early awareness push as CSL hopes to gear up for a potential launch in the next year, should the FDA give etranacogene dezaparvovec the green light.
BioMarin, which has a rival hemophilia gene therapy in late-stage trials, has taken a similar marketing tack, running a new documentary about hemophilia later this year based on conversations with hemophilia patients.