Alnylam is using Twitter and a new website to run a European-based awareness campaign for a rare condition known as hereditary ATTR (hATTR) amyloidosis.
This genetic condition is a physically debilitating disease that can prove fatal while also lowering quality of life but is tricky to pin down as symptoms may mimic other diseases and can vary from person to person.
That variation is the focus of the new video, posted this month by Alnylam on Twitter, that centers on “David,” a real hATTR patient. His story is told via animation, which is mainly blue and white in color, in the 60-second piece.
David talks about “realizing something wasn’t right” when he went for a long walk but struggled with a fast heart rate and breathlessness that left him hospitalized.
He said it “didn’t make sense” as he had a general heart test which showed no problems. But then, his sister Ann received a diagnosis of hATTR, which David notes “affects people in different ways.” This also includes nerve problems, such as a loss of voluntary movement in the arms and legs, and issues with digestion as well as heart conditions including heart failure.
He said Ann’s experience was the “tipping point” for his own hATTR test, which also came back positive. “I want others to have greater awareness and a better understanding of the disease,” he says, adding that “the more family members talk to each other, the more they can be informed."
That’s because of the hereditary nature of the disease and the fact that each child of one parent with hATTR amyloidosis has a 50% chance of inheriting a genetic mutation that causes the condition.
The video, which has Alnylam’s logo but no mention of any of its drugs, directs the viewer to a new disease awareness website that breaks down symptoms of hATTR and its genetic component.
The condition is tricky to diagnose, and it can manifest as many other diseases. With it being rare, patients can pass through several doctors before hATTR can be picked up as the cause of their symptoms. Alnylam is targeting patients in this video so they can take the proactive step of getting tested.
Running any direct-to-consumer ads for prescription medicines in Europe or the U.K. is strictly verboten, but pharma companies can get away with these types of awareness campaigns that talk about a disease they cater for but don't mention the drug they market for it.
For Alnylam, that drug is RNAi drug Amvuttra, which nabbed a European approval last September for hATTR amyloidosis in adult patients with stage 1 or stage 2 polyneuropathy.
The drug, which also grabbed an FDA approval last summer, could make as much as $1.8 billion by 2026 should it gain extra licenses, according to analysts at Evaluate Vantage. Alnylam also sells Onpattro, for ATTR polyneuropathy, though Amvuttra is set up as the next generation form of that drug.