Anne Marie Ciccarella is not a doctor, though she spends a great deal of time with them. She’s not a researcher, though she routinely pores over scientific papers on cancer. And even though she spent most of her career at an accounting firm, she’s getting paid by drug companies for her opinions.

Ciccarella is one of a growing number of people who have leveraged their experiences as patients and the loyal followings they’ve built on social media into a career, no matter how small their audience.

For years, so-called influencers — celebrities, former reality television contestants and sometimes, former lawyers or other professionals — have hawked diet teas and hair products everywhere from Facebook to Snapchat. And now, pharma is catching on.

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An entire industry has cropped up to link drug makers with the industry’s own version of an influencer — people, usually patients, who have small but devoted followings and who might be willing to promote their products or share valuable insights about the patient community. Ciccarella, for example, is one of nearly 100,000 such influencers on the rosters of Wego Health, one of a handful of companies that essentially act a patient influencer talent agency.

It’s a lucrative new frontier for drug advertising — and for patients, too, who benefit from close contact with the drug maker and, often, a fee. But it is also an increasingly regulated frontier, and one with ethical quandaries that some experts say the drug industry hasn’t fully considered.

“What has become obvious now is that micro-influencers, folks with smaller communities can have a dramatic impact on people’s behavior,” said Jack Barrette, the founder and CEO of Wego Health.

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Wego is perhaps the biggest company of its kind, though competitors like Voz Advisors also link patients and other interested parties with drug companies.

Wego functions, largely, as a database. Patients who feel they have a dedicated following and want to work with brands can reach out via Wego’s website to see if there’s a relevant and interested drug company. Drug companies, too, can check with Wego for patient influencers in a new space, or even for potential patient participants for an advisory panel.

Most of the time, Wego’s helping companies find patients, not the other way around, Barrette told STAT.

“We tend to start with, ‘This is a very influential person, now let’s see what about your product is relevant or not and then we’ll see if they’ll work with you,” he said.

Unlike ordinary Instagram influencers — who will generally get paid for making a post about a product — patient influencers can be paid both for posting about a drug or a device, but also for bringing the opinions of people like them to the companies developing those products.

In some ways, Wego is its own kind of advertising agency for the drug companies it works with — just a very targeted one. Drug developers may pay Wego to reach out to its network of influencers to let them know what’s new.

Some influencers will give their opinions for free; others that participate in videos or events can get paid. Ciccarella, for example, received $1,500 from AstraZeneca to sit on a seminar panel about patient engagement. The company also covered her travel expenses.

“That was generous,” Ciccarella noted.

Often, companies will pay less — Ciccarella said she’s also been told she wouldn’t be paid because a company considered her a member of the media. (“None of us is a credentialed press person,” she noted.)

In that way, Wego acts like an agent. “[Barrette] has pushed to have us compensated for the time we put in to things,” Ciccarella said.

There are several health-specific online forums — notably, PatientsLikeMe — but for Wego, most of the action is on Facebook, “The platforms include, probably in rank order, Facebook is far and away the most active community — even for serious health issues,” Barrette said. “Then you’ve got Instagram, Twitter, also very important, and then other platforms in descending order from there.”

Through Wego’s websites for the companies it works with — which it calls sharing hubs — patient influencers get a chance to talk to companies making the drugs they use and get company-cleared material to use in their own posts. In some cases, they’re paid for their time or input or presence at events.

Drug companies get excellent advertising in return — and it’s cheap.

Sunovion, a pharmaceutical company based in Marlborough, Mass., saw a jump in earned media impressions — a common marketing metric —  from less than 100,000 impressions to more than 13.2 million after using Wego’s services, according to the company’s former senior marketing director, Paul Murasko.

According to a presentation Murasko and Barrette gave in 2017, more than 50,000 people visited one of Sunovion’s sharing hubs on Wego. More than 14,000 took a “high-value action,” like filling out a discussion guide that the company’s research showed led to more prescriptions for a drug.

During that same presentation, Barrette noted that about 87 percent of people who saw an influencer share information about a specific drug would ask their doctor or health care provider about it — something that Murasko notes often leads to a prescription.

The return-on-investment is particularly high with influencers since their work is so much cheaper than other forms of direct-to-consumer advertising, like TV ads.

“I’m putting in single-digit percentages [of my budget],” Murasko claimed. “We’re talking 2, 3 percent.”

That’s not the only benefit to pharma companies, either. Micro-influencers also give drug companies new insights into the patients taking their products. “A lot of my work over the last four years with patient influencers has been in using them as market research, using them as advisers,” Murasko said. “You can easily see what’s of value and what’s not.”

“Pharmaceutical companies, like physicians, have a blind spot — the patient’s perspective,” said Dr. Danny Sands, the chair of the board for the Society for Participatory Medicine. (Wego has sponsored the society’s annual meeting.) “They really don’t know what it’s like to be taking the medications. What do the side effects really feel like?”

For companies like Wego, the benefits translate into some serious cash. Wego’s revenue grew to well over $3 million last year — Barrette declined to make specific revenue figures public — and that’s just the start, Barrette said.

“Our revenue will grow [significantly] year on year, which is a big jump for any company, even one with relatively small numbers,” he said. “[It] looks like it will continue even more strongly next year.”

Influencers — broadly, and in the health care space, too — are increasingly subject to scrutiny and skepticism. Many see their work as another form of advertising, and question both the transparency of the players involved as well as the financial links between a given blogger or patient and the massive drug companies whose products they’re pushing.

For over-the-counter products, the Federal Trade Commission can (and has) come after influencers who fail to disclose they’re being paid for their endorsement. And social media influencers who act as boosters for cryptocurrency might get a stern letter from the Securities and Exchange Commission, which has done most of the enforcement so far in a loosely regulated space.

Drugs are different. If an influencer endorses an FDA-approved drug, there’s a bunch of information he or she must say about the approved indications and the risks. In 2015, Kim Kardashian West failed to mention the risks of a drug called Diclegis that she was promoting for morning sickness and didn’t mention that the drug hadn’t been studied in women with a particularly severe form of the condition. The FDA sent the company a warning letter and asked it to remove the posts; Kardashian took at least one down.

But if companies are promoting awareness of a condition rather than a drug, they historically haven’t needed to disclose that they’re behind the content.

An FDA press officer also confirmed there aren’t any restrictions on who can be a spokesperson for a prescription drug — just about what they can say.

But patient influencers — paid or otherwise — are a particularly American phenomenon. In other markets, their involvement opens up a whole other can of worms. “There are still a lot of questions about how a company can do this in a compliant way, particularly in Europe” and jurisdictions where there is no direct-to-consumer advertising allowed,” said Ellen Coleman, the president and CEO of Voz Advisors.

And there’s always the potential that influencers may go outside the bounds the FDA sets. “There’s a myriad of ethical issues around this,” said Lisa Gualtieri, an assistant professor at Tufts’ school of medicine who has studied the use of social media to promote off-label uses of drugs. “What’s the responsibility of various stakeholders to educate people that this is potentially dangerous and harmful?”

Wego said it does provide some educational programs to influencers that cover exactly those issues, like what advice crosses the line into medical advice, what disclaimers they need to attach, and how to check some of the claims they’re making online. “We’re definitely advising them on how to stay on the right side of that line, but day to day we’re not kind of looking at folks and saying, are you crossing it or not,” Barrette said.

Ultimately, Barrette said, companies just have to trust that the influencers will stay in bounds — just like the people they connect with have to trust that their integrity hasn’t been compromised by any compensation.

For Ciccarella, the balance is clear. “There’s no amount of money that’s going to get me to say something I don’t believe in,” she said. “I’m going to tell it like it is.”

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  • The FTC was supposed to protect vulnerable and sometimes desperate patients form this kind of deceptive marketing. This is not very new, it has infiltrated the Internet like a virus. The Device Industry has been peddling their wares in really deceptive and immoral ways. They jumped on the so called opiate epidemic, to market their products to desperate pain patients who were dropped by their physicians. They were not the only deceptive marketers who targeted these groups. They used magazines given out in doctors offices, along with deceptive websites, and created non profit. patient empowerment or education forums.
    They have made a lot of money deceiving desperate people, creating fake clinical trials, to gather personal health information, and peddling pseudo science products. Almost none of this garbage is labeled as advertising. They have also infiltrated newspaper, opinion sections with unlabeled advertorials.
    The current “Healthcare is a Market” promoted by profiteers is killing Americans. Once credible sites or publications sold out, and became sensationalized “science” sprinkling a few fact based articles with advertorials and paid marketing.
    If any of you jokers want to know why 80, 000, American died from the Flu last year, or why people can’t control their Diabetes, look no further than your local newspaper. Fear based marketing works, fear of vaccines, sells products. That kind of thing should be criminal, but here in the US is is just good business. Start reading between the lines people, even on this site.

    Now that we have industry insiders running the federla agencies that used to protect people, anything goes.

    • Agreed. These are sponsored and should be labeled as such. We are also talking about a whole host of issues involving efficacy. If it is just research like those reaching out to Pharmas and saying, “These are my experiences taking your drug (good and bad)” that’s useful. But promoting for a fee? That’s marketing and advertising. I’d want to know if my FB friend or person I’m following on Instagram is being paid to advocate for the drug!

    • Most health bloggers belong to the HON Code, which requires those very disclosures. And most are honest about what something does, or doesn’t do, for them personally. The only thing we can discuss about a drug we are not personally taking is where it’s at in the FDA approval chain (which is public knowledge if you know where to search for it) and discuss with patient colleagues how it’s being used.
      Disclosure: I am a member of WEGO Health and a former paid blogger in the diabetes space (the site at which I was blogging changed ownership and ceased publishing patient blogs).

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