When asked what distinguishes Scout Health from the other firms that focus on rare disease, principal and president Raffi Siyahian responds with unusual candor. “We don’t believe other agencies are doing the same type of work,” he says.

Considering Scout’s status as one of the longest-tenured rare disease specialists in North America — it’s been in the business for more than 21 years — one can forgive Siyahian for exercising his bragging rights. “We are the most experienced and we have the most seasoned staff, so we truly believe we are the experts in this space,” he adds. 

At the same time, Siyahian recognizes Scout can’t rest on its laurels, given the increasing number of agencies attempting to play in the rare-disease space. That’s why the company’s 2020 was largely about maintaining safety, sanity and service amid the ongoing volatility.

Scout Health

“We couldn’t lose focus, because our clients couldn’t lose focus,” he explains. “Ultimately they’re serving patients who don’t have the luxury of taking a break.”

Given access limits imposed by the pandemic, the agency’s CRM and non-personal communications became all the more important. To that end, Scout added several new roles, including directors for CRM and analytics (filled by Steve DeLabio), digital planning and innovation (Art Stiefel) and digital delivery (Rich Yarbrough). Overall, staff size grew from 105 at the end of 2019 to 110 at the end of 2020. 

Revenue similarly ticked upward, from $23 million to $24.5 million, on the back of client mainstays such as Anbex, Lundbeck, Travere Therapeutics and Jazz Pharmaceuticals. For the latter, Scout successfully launched narcolepsy drug Xywav during 2020, despite an aggressive timeline and the overarching pandemic conditions.

Siyahian is particularly excited about the gene therapy space, in which the agency has been trying to make inroads for some time. “In rare and ultra-rare disease, we’re trying to crack the code at the core of these conditions — and a lot of these, at their core, are genetic disorders,” he explains.

Scout has been preparing disease education programs for two potentially transformational drugs and developing digital outreach methods for finding patients and their caregivers. Not surprisingly, the challenge is communication: It’s not easy to forge meaningful connections when a product or solution isn’t yet available. 

“You need to be careful about how much hope you generate. But at the same time, you need to let patients and caregivers know, ‘You may want to engage with this digital medium or this website, and enroll here so you can receive ongoing information on something that could be transformational down the road,’” Siyahian says. 

For Siyahian and Scout, it’s this type of potential outcome that makes the job so rewarding. “When you sit behind the glass of market research and you’re seeing a conversation with a parent who is in tears because they were finally able to get their child properly diagnosed and on a therapy that’s working, you realize, ‘That’s why I go to work,’” he continues. “That’s why I’m in the rare and ultra-rare disease space — because maybe, just maybe, something I did during my work day helped lead that parent there.” 

. . .

The idea I wish I had…

One brand we would have liked to support is GBT’s sickle cell drug Oxbryta, but it just didn’t work out. When you are an agency focused in rare disease, helping people in need is part of your nature. — Raffi Siyahian