Damian Washington didn’t want to be “the MS guy.”

He was a lifelong performer — he booked his first commercial at 15 promoting Captain Crunch cereal — and a funny guy with a YouTube channel full of clever videos. The only problem? He wasn’t getting a lot of views.

Until one day in May 2017. That’s when he filmed his experience at an infusion center getting Genentech’s then-new multiple sclerosis treatment Ocrevus. Suddenly, the self-proclaimed nerd with a degree from Middlebury College was getting hits.

Today he’s what marketing teams and tech-savvy teens call an influencer — the semi-famous rulers of social media who are slowly replacing celebrities in pharma digital ad campaigns.

Thousands of users watched Washington’s first infusion video, which wasn’t sponsored. In the intro, he talks about his experiences taking Copaxone and Rebif. The former didn’t give him the desired effect and the latter came with side effects that he described as a hangover-like feeling minus the night of drinking.

“We kind of want to nip this disease progression in the bud,” he says in the video, explaining why he switched to Ocrevus. Then he brings a camera to West Hills Hospital & Medical Center in Los Angeles where he explains each step of the infusion process as it’s happening, live while getting his IV drip.

“Done deal-y, for really,” he says at the end. “First injection, so far so good, quick and painless … Thanks Ocrevus.”

Comments flooded in from other MS patients. To his surprise, Washington had inadvertently created a community forum for patients who were eager to share their own stories.

“Great video! I’m moving from Tysabri to Ocrevus right now. It was good to see the process,” one commenter posted.

“90 seconds got you a new subscriber bro. Great video, looking forward to checking out your others. I have to stop Tysabri and am considering Ocrevus,” another said.

After that, Washington started cranking out MS videos. The viewers wanted more — and so did Ocrevus’ maker Genentech. After seeing his videos, the pharma company began signing him on for promotional work. Not all of his videos are sponsored, but his most recent gig was performing a rap at the company’s #MSVisibility Virtual Concert emceed by Broadway performer David Osmond.

“The aim is to shift the algorithm on YouTube in my favor as far as relevant content and information for people with multiple sclerosis,” Washington said, adding that it’s also “another way to put myself in front of people and to be the answer to questions that people have.”

In the direct-to-consumer space, this type of marketing — algorithm-driven social media marketing — is moving to eclipse TV advertising by pharma marketers in terms of reach, Kathryn Aikin, senior social science analyst and research team lead in the FDA’s Office of Prescription Drug Promotion, said at a recent Duke University event. On TV, pharma ads feature familiar faces like Queen Latifah, Serena Williams and Annie Murphy, but many influencers on social media are just regular people — with a lot of followers.

Across the board, influencer marketing was worth around $9.7 billion in 2020, according to Influencer Marketing Hub, which estimated the market would grow to $13.8 billion in 2021. At the same time, overall digital ad spend in the pharma space skyrocketed 242% year over year from January to February in 2020 and 2021, MediaRadar reported.

Health Union, which acquired WEGO Health in June, pairs pharma companies with patient influencers as one of its services. It also owns 38 — and counting — online health communities, such as multiplesclerosis.net. While Washington is now proud to be “the MS guy,” Health Union has a combined network of more than 100,000 influencers in virtually every condition.

Early figures suggest the strategy is working: In one case study, an Instagram campaign by Health Union for a “niche oncology brand” featuring patient and caregiver influencers saw 114% higher traffic rates compared to the brand’s benchmarks on other digital media.

As pharma advertising shifts to social channels like Instagram and TikTok, a number of questions arise: Who are influencers, who’s regulating this kind of marketing, and will it stick — or is it just another fad?

For some, the word “influencer” conjures images of stilettoed Kardashians hawking the latest fads — and that wouldn’t be completely off-base. The Canadian biotech Duchesnay did, after all, receive an FDA warning letter back in 2015 after Kim Kardashian endorsed its morning sickness pill Diclegis on Instagram without detailing the drug’s risks. The reality TV star ultimately issued another post with the hashtag #CorrectiveAd, in which she outlined the risks.

And her sister Khloe Kardashian is currently one of the celebrity migraine sufferers fronting Biohaven’s Nurtec ODT digital-first advertising campaign.

But to Jack Barrette, former CEO of WEGO Health and current chief innovation officer of Health Union, the definition of an influencer in the pharma space is much different.

“An influencer is, especially in the area of serious illness and chronic illness as we define it at Health Union, someone who has a following of other folks that they converse with and bring together and provide advice to,” he said.

Jack Barrette (Credit: Christine Hochkeppel, Salty Broad Studios)

When he co-founded WEGO more than 14 years ago, Barrette would have called them “health activists” or “patient leaders.” If he had to guess, the name “influencer” began to stick roughly three to five years ago when it became clear that social media communities were forming around these patients.

Why would a company choose to work with regular people when they could be working with celebrities like Kardashian? In the age of social media, it’s all about establishing a relationship, Barrette said. It may seem intuitive, but someone with 1,000 dedicated followers has a more personal connection with consumers than someone with hundreds of thousands. The smaller audience influencers often personally respond to comments and answer questions. The bonus for pharma companies is outreach to a much more targeted audience.

“What pharmaceutical companies really gain is a chance to be a part of that social health conversation, where people are actually knowing each other and providing information, in a trusted and authentic way,” he said.

Then there are the influencers who lean more on the side of celebrity. Take Derek Theler, for instance, a handsome TV sitcom supporting actor who markets for Dexcom’s glucose monitoring system on Instagram. A recent image he posted wearing Dexcom’s system on his torso — tagged “paid partnership with Dexcom” — as he stands by a waterfall got more than 6,000 likes. The comments were flooded with fire and heart-eye emojis, along with some feedback from patients.

“It’s so strange seeing the Dexcom on an adult’s body! My son is 6 years old and it takes up much more real estate! (Less than when he was 2, though). All the best, thanks for being a positive T1 ambassador for people like my boy to look up to,” one commenter wrote.

One of the reasons Dexcom’s campaign has been so successful, according to Hyosun Kim, an assistant professor of communication at Indiana State University, is that it brings in a lot of user-generated content.

Hyosun Kim

“A lot of people … posted on their social media, ‘I [am] a Type 1 diabetes patient and I used Dexcom and it’s a magical game-changer,’ or something like that,” and that can be really meaningful to fellow patients, she said. 

Barrette sees Health Union as a sort of liaison between pharma companies and patient influencers, although it’s not always about selling a drug. A lot of the work Health Union does is unbranded, meaning the influencers are hired by a pharma company to do educational work or raise awareness for a disease, without mentioning any product names.

The end result is something like an ad, yet doesn’t look or sound like one.

“If you’re just scrolling on your phone, and you see a guy being like, ‘Look, if you got MS man, listen: Let me tell you about this other thing, right here,’ that is a bit more engaging, and speaks more to the viewer,” Washington said.

What could go wrong? It depends on who you ask. While Kim sees the benefits of this type of marketing, she’s also been closely studying the FDA’s concerns, and has picked up on a few key themes.

Being from South Korea, Kim had never seen pharmaceutical ads until she came to the US for graduate school work and was shocked by a Viagra commercial on TV. She ended up writing a paper on prescription drug advertising for her media law class, and since then, she’s been on a mission to learn everything she can. Recently, she spoke at the virtual Duke University event along with Aikin that was called, “Informing and Refining the Prescription Drug Promotion Research Agenda.”

For the most part, Kim likes the idea of direct-to-consumer advertising. It puts some of the power into patients’ hands and allows them to have better discussions with their doctors. But looking at warning letters sent by the FDA, she identified three of the agency’s main concerns with social media advertising: the use of first-person narratives, the promotion of non-approved drugs or products, and misleading ad techniques such as having to hover over a post to see the risks.

“Marketers are fascinated by influencer marketing because these influencers are relatable, touchable, approachable, kind of, you know, personalities,” Kim said. “People see them as someone like me, like fellow consumers or fellow patients.”

But in reality, influencers working with pharmaceutical companies are not totally like you — because they have an incentive to post. Some critics argue influencers are selling not only products, but a certain lifestyle. Theler has diabetes, but with his Dexcom system, he also swims with his dog and paddleboards in Sequoia National Park, one Instagram post suggests.

“[Consumers] are more likely to develop a strong relationship with this person,” Kim said. “And then they see this ad as less promotional and more like information,” she said, adding that while that can be good news for the marketers, it may be concerning for viewers.

One caveat to consider, of course, is that patients cannot access prescription drugs without consulting with a physician.

“It is a totally different ballgame,” Washington said. For one, he was taking Ocrevus before Genentech began sponsoring him. And when he’s doing a video, he’ll often make a disclaimer similar to: “This is not medical advice. Speak to your doctor,” he said.

Still, critics have poked holes in this type of marketing approach. For example, how do you know if an influencer has taken the drug they’re promoting? Or if and how they’re being paid?

The Federal Trade Commission can reprimand and fine influencers who are promoting without disclosing the fact that they’re being paid for the content. The regulatory agency requires influencers to disclose any “material connections” they have with a brand they are endorsing.

In October, the FTC announced it sent out penalty notices to more than 700 companies putting them on notice that they could face civil fines up to $43,792 per violation for improper endorsements. Among the companies on the list were more than a dozen pharma companies including AbbVie, Bayer, Bristol Myers Squibb, Eli Lilly, Merck, Pfizer and Takeda.

Still, the rules and regulations can get ambiguous when a patient is raising awareness about a condition, rather than promoting a drug.

While Barrette said there’s “room for interpretation,” Health Union always discloses sponsorships. Washington has never directly promoted a drug for a pharmaceutical company, but when companies hire him to make videos raising awareness for MS, they’ll have him verbally disclose if a video is sponsored or include it in the caption. Back in 2020, the FDA proposed a study with several types of endorsers (including influencers) to find out whether disclosing payment status would affect patient reactions.

As for disclosing whether an influencer has actually taken the drug they’re sponsoring, Barrette isn’t aware of any specific FDA requirement to do so.

However, Health Union and WEGO have taken what he calls a “proactive stance,” and in almost all cases the promotional content will reference the influencer’s personal connection with the drug. For example, an influencer may say, “While I have not taken this medication myself, many in my patient community are discussing it.”

Is this the dawn of a new era in pharma marketing? Barrette said the social health movement, as he calls it, is exploding. The pandemic has encouraged people to connect in “a very real and therapeutic way” through digital means, and there’s no turning back. In addition, pharma digital and social spending has only continued to grow over the last couple years.

“This idea that digital online connections are valuable — maybe it’s not in real life, but they have tremendous benefit to folks with especially chronic disease and serious illness to become healthier because they participated in the social health movement,” Barrette said. “So I see a continuing growth … I think we saved five or 10 years in adoption of social health because of the pandemic.”

And the feedback, so far, has been positive. Health Union grew the number of pharma companies it worked with by about 30% from 2020 to 2021, according to Barrette.

When Washington was diagnosed with MS about five years ago, the digital community wasn’t as established. He turned to blogs like Ardra Shephard’s Tripping on Air. But it wasn’t the same as picking up a smartphone and watching a full trip to an infusion center.

“I would say that it’s never a good time to get MS. However, this is a fabulous time to get MS,” he said. “Me being able to talk to someone in London about their disease, their condition, my ups and my downs and their ups and their downs …  it’s really, really remarkable what we have going now.”

For Washington, it’s not about marketing trends or even the sponsorship payments. When asked to predict what’s next in social media, he said he’s just going to keep doing what he’s doing.

He said, “I make videos every week so that people with multiple sclerosis feel less alone. Period.”

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