Alnylam draws on patient artist’s striking depictions of life with a rare genetic disease in new ad campaign
25 Aug 2022
College student Amalia had just begun her freshman year when she came down with flu-like symptoms that worsened into debilitating stomach pain and eventually an inability to eat or drink. While doctors struggled to determine the cause as months wore on, Amalia turned to art and painting to express her pain and hopeless feelings.
She was eventually diagnosed with the rare genetic disease acute hepatic porphyria (AHP) — and now both Amalia and her art are featured in Alnylam Pharmaceutical’s latest campaign for its med Givlaari, approved in 2019 to treat AHP in adults.
Preview
Source: Endpts
Mara Molinell
An online gallery of Amalia’s paintings, along with her written and video detailed explanations about the times before, during and now living with AHP, is at the heart of Alnylam’s digital campaign. Alnylam amplified the work with a USA Today sponsored content original story about Amalia earlier this month with ongoing promotions through this month promoting it.
“We have a responsibility to understand the patient perspective and try to connect to the community,” said Mara Molinello, Alnylam’s SVP and head of US commercial. She added that Amalia’s work “bring to life her passion and talent — specific to her — in the way that she expresses herself. It’s a very compelling way to communicate in a different way without words.”
“Sometimes words don’t do justice to what a person goes through when they are diagnosed with a disease or trying to find an answer for a rare disease,” Molinello said.
As Amalia explains in a video about one of her paintings where her hands dominate the foreground, wrapped in strings: “I painted myself during this time: trying to claw my way back to health, but too weighed down, too exhausted. … The painting puts you on the ground with me, unable to get up.”
Preview
Source: Endpts
Amalia’s months-long journey to diagnosis is actually atypical — people with AHP can go as long as 10-15 years without getting one. In her case, her grandfather mentioned a genetic disease porphyria that ran in the family.
“With roughly 7,000 rare diseases out there, you can’t expect a doctor to know everything about them, so I think that’s where we as a company can come in and contribute and help raise awareness and help appropriately educate physicians on some of these diseases,” Molinello said.
The new Givlaari art-focused campaign comes on the heels of Alnylam Pharmaceuticals’ documentary about AHP as seen through the eyes of seven patients around the world. The documentary, which debuted on Rare Disease Day (Feb. 28) called “Two of Me: Living with Porphyria,” aims to raise awareness and spur diagnosis of the condition.
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