Julianne Hough has been talking about her endometriosis a lot. Over the past couple of years, the actress, singer, and two-time Dancing With the Stars champion has appeared in women’s lifestyle publications and on entertainment talk shows emphasizing her shock when she found out that the menstrual pain she was experiencing wasn’t “just … what being a woman was.” Much of the coverage follows a common theme — it urges women to “be proactive” and to visit their doctors if they experience any uterine pain or discomfort.
Endometriosis is, to be fair, somewhat in need of better marketing: the Department of Health and Human Services estimates that about one in 10 women of reproductive age has endometriosis — more than 6.5 million women in the U.S. alone. However, because endometriosis, which occurs when tissue that typically grows inside the uterus begins to grow outside of it, is difficult to diagnose, most of those women don’t even know they have it; some of the disease’s symptoms, like painful periods and pelvic pain with intercourse, can be taken as symptoms of other conditions. Failure to diagnose, in part because of the benign nature of many of the symptoms, means that available treatments are also limited. Some specialists believe that excision surgeries are the most effective treatment available, but due to risks associated with surgery, cost of procedures, and a general mischaracterization of pelvic pain, this treatment is rarely recommended. On average, American women experience a 12-year delay in receiving an endometriosis diagnosis.
The consistent coverage of Hough’s illness is not simply because she wants to get the word out about endometriosis. Since 2017 she has worked as a paid spokesperson for the biopharmaceutical company AbbVie, “helping to raise awareness” of the disease. Besides appearing in countless publications in order to “help raise awareness of endometriosis” Hough has created social content about the disease that has been distributed on AbbVie’s channels. The coverage features her promoting various innocuous, hashtag-friendly campaign names sponsored by AbbVie such as “SpeakEndo,” “MeInENDO,” and “Get in the know about ME in endoMEtriosis.”
“Awareness campaigns” — unbranded promotional campaigns run by pharmaceutical companies with the intention of drumming up demand for their products prior to launch — have been fairly common in the marketplace for decades. AbbVie, which is expected to reach $934 million in sales by 2022, orchestrated awareness campaigns to drive media coverage of endometriosis as part of the launch of its own endometriosis drug, Orilissa, the “first and only” treatment of its kind, in that it treats endometriosis-related pain. With an estimated 200 million worldwide potential patients, many of whom are undiagnosed or without access to available treatments, AbbVie has engaged this kind of advertising to expand the “top of the funnel” for the sale of Orilissa.
But the lack of transparency in such awareness campaigns is not only troubling, it may also violate applicable regulations. In a 2015 Scientific American article, Marcia Angell, a senior lecturer on social medicine at Harvard Medical School and the former editor-in-chief of the New England Journal of Medicine cynically describes awareness campaigns. “Promoting diseases to sell drugs is a common and venerable practice among drug companies,” she writes. “They try to expand the size of the market by implying that nearly everyone has the condition.” The Federal Drug Administration enforces strict regulations for pharmaceutical advertising — ads are required to disclose investors and share risks of treatment. However, because awareness campaigns typically do not mention a specific drug by name —, this type of messaging allows pharmaceutical companies to skirt those extremely rigid messaging laws.
The FDA’s public-facing website does not specifically address “awareness campaigns,” but it does comment on “help-seeking ads,” or what it describes as non-specific calls to action identifying various symptoms and recommending that a consumer visit their doctor. The FDA indicates that because of their unbranded nature, help-seeking ads are under the purview of the Federal Trade Commission, as part of its mission to regulate advertising and marketing to prevent deceptive and unfair acts or practices.
Apart from a handful of exceptions, the FTC broadly regulates ads featuring endorsements and testimonials from spokespeople and branded content on social media and publisher channels. AbbVie’s various endometriosis-awareness campaigns reflect a recent evolution of the outmoded “help-seeking ad,” in using strategic media coverage of celebrity spokespeople.
FTC regulations require “full disclosure” wherever there is a “material connection” between an advertiser and an endorser that would not be “reasonably comprehended” by an audience. The FTC defines an endorsement as “any advertising message that consumers are likely to believe reflects the opinions, beliefs, findings, or experiences of a party other than the sponsoring advertiser.” An advertiser's “product” is also defined broadly — even an entire “industry” that is the target of advertising would be covered by the regulations. The stated intention of these regulations to insure compliance with “the basic truth-in-advertising principle that endorsements must be honest and not misleading.”
The FTC is not wholly prescriptive on what disclosures should look like in practice, but they are required to be “clear and conspicuous.” In the context of digital-media publishing, disclosures could have been made in one of many ways, but in Hough’s case, would have at the very least required some clear indication her material connection to AbbVie, even if her individual media appearances were not specifically paid for or facilitated by the company.
Many, it not most, the dozen or so articles I surveyed did not disclose Hough’s material connection to AbbVie. Even the articles that did disclose Hough’s association with the campaign did so without clarity of the campaign’s pharmaceutical origin, instead noting that Hough was the “face of ... a national campaign aimed at spreading awareness of the condition.” Other articles said that Hough was “a spokesperson for SpeakEndo, an organization that raises awareness about endometriosis and endometriosis symptoms,” which could be construed as a kind of community outreach or charity work. Although some pieces refer to Hough’s association with “MEinEndometriosis” or the “SpeakEndo” campaign, few, if any, disclose that those campaigns are paid for by AbbVie, or that AbbVie has one of very few treatments on the market for endometriosis.
Although we know little about Hough’s financial relationship with AbbVie, the AbbVie site identifies her as a “paid spokesperson of the AbbVie sponsored campaign, SpeakEndo.” But Hough’s commercial affiliation with AbbVie isn’t even the most disconcerting example of the company’s overarching, undisclosed influence Several doctors with financial ties to Abbvie have appeared alongside Hough in articles and on television, urging women to consider endometriosis and to visit their doctors to discuss the disease — without disclosing their connections to the pharma company.
In a 2019 Women’s Health article titled “Julianne Hough says Endometriosis Makes Sense Painful and ‘Frustrating,’” the San Diego-based fertility specialist Dr. Sanjay Agarwal “offers some additional tips” for endometriosis sufferers, including the “doctor permitting, a new FDA-approved drug called Orilissa.” According to OpenPaymentsData, a government managed database of pharmaceutical and medical device payments to doctors, Agarwal received almost $200,000 from AbbVie in 2016 and 2017 (figures for 2018 have not yet been released). To put this number into perspective, the national mean figure for pharmaceutical payments to gynecologists in 2017 was $764.69.While Agarwal’s explicit mention of the drug clearly requires disclosure of his material connection to the drug under FDA rules — something that was not done in the Women’s Health article — even less-direct endorsements of a specific treatment could require disclosure if the endorser’s material connection to an advertiser would influence how the endorser’s message is received by a consumer.
Other doctors who do not explicitly mention Orilissa also are quoted in articles with Hough in a manner that almost parallels an AbbVie press release. Dr. Joy Brotherton, an associate professor at the David Geffen School of Medicine at UCLA, accepted more than $200,000 from AbbVie between 2014 and 2017. In a 2017 Glamour article about Hough and endometriosis, she urged women to be “proactive” about the disease: "the biggest misconception women have about endometriosis is that the symptoms, such as chronic pelvic pain during or between periods or pain during intercourse, are 'normal' or just 'part of being a woman… I think the more people who know endometriosis exists, hopefully, the faster women who are in pain can get diagnosed and treated." The article did not mention that Brotherton received payment from AbbVie or, as AbbVie’s own website discloses, was a “paid consultant” of the company.
The New York-based obstetrician-gynecologist Dr. Rebecca Brightman has appeared on multiplenews segments with Hough speaking about endometriosis and the #SpeakEndo campaign. Brightman received a $45,000 consulting fee from AbbVie in 2017, but neither of the above referenced clips included a disclosure that she received payments from the company.
Although I could not determine if payments to doctors or Hough were directly tied to their appearances or interviews, at least one journalist who covered this topic and wished to remain anonymous confirmed to The Outline that AbbVie sought out press coverage and provided access to Julianne Hough, as well as a quoted medical expert for an interview.
I asked Self Magazine about their March 23, 2017 article titled “Julianne Hough's Struggle with Endometriosis is All Too Common.” The article consisted of an interview with Hough and quoted Brotherton discussing endometriosis and treatment. A Self spokesperson said that they did not know if Hough or Brotherton were paid by AbbVie at the time of publication, and therefore did not believe any disclosure was necessary. In responding to my inquiry, the spokesperson added: “[W]e appreciate you bringing this to our attention, and we're discussing internally our editorial policy around such disclosures going forward.”
So, are media companies responsible for seeking out connections like these and disclosing them? The FTC has taken minimal action on this topic, but most of it has been aimed at advertisers, not publications. In 2016, the FTC brought a complaint against Lord & Taylor after it was discovered that the department store paid for editorial coverage in Nylon magazine without disclosure. In an FTC blog post issued shortly after the case settled, the commission stated that any “connection between the endorser and the seller that might materially affect the weight or credibility a consumer gives the endorsement” must be disclosed, and that advertisers should train and monitor spokespersons “and follow through with an effective compliance program.” When contacted for comment, AbbVie did not address whether it considered the SpeakEndo awareness campaign to be advertising, or whether the campaign complied with FTC endorsement guidelines.
Michael Ostheimer, an attorney in the division of advertising practices at the FTC, said that he was not aware of any public action that the FTC had taken on help-seeking ads or unbranded pharmaceutical advertising in recent years. He declined to comment specifically on AbbVie, but he did say that, in the case of an individual implicitly endorsing a particular treatment or product, the FTC would look to see “if the audience knowing about the person being paid [would] impact their decisions at all.”
Regardless FTC enforcement, i is troubling that pharmaceutical companies can so readily drive the media narrative around a disease cloak their objectives in what appear to be sympathetic public service announcements. Awareness campaigns that leverage spokespeople for native coverage use specific narratives to pursue objectives of their savvy advertisers. To be able to do so without disclosure is an issue for both advertisers and the media. A spokesperson who is paid to solicit media coverage for a specific disease is a material connection that should be clearly disclosed to a consumer. At the very least, awareness campaigns like #SpeakEndo have fallen through the cracks of applicable regulation and should be addressed by the FDA or the FTC.