How Big Pharma sells you drugs you probably don't need: Celebrities who spread 'disease awareness'

Did you ever wonder why new medications so often debut right after awareness of the condition they treat increases? It is no coincidence. The tactic is called unbranded advertising and “disease awareness,” and drug companies spend more on it than they do for regular advertising.

This article was originally published by The Influence, a news site that covers the full spectrum of human relationships with drugs. Follow The Influence on Facebook or Twitter.

Unbranded disease advertising usually suggests that many more people suffer from a condition than anyone thought—it may even be a “silent epidemic.” It lists symptoms, offers “quizzes” and tries to scare people into “seeing your doctor.” The diseases may not be “made up,” but usually exist in much smaller numbers than is suggested. What disease awareness advertising does not do is tell you the drug that is being marketed for the condition or the company behind the “education.” (Which is why it is called “unbranded.”)

Pharma companies love disease awareness advertising because, unlike direct-to-consumer (DTC) advertising, risks and warnings of possible drug treatments do not have to be listed. In DTC ads, the risks and warnings are often as long as the sales pitch itself, and sometimes perversely “unsell” the drug even as the viewer is looking at sunsets and puppies.

But not everyone agrees with the omission in unbranded advertising. For example, Aaron Kesselheim, MD, a Harvard professor, told a New York Times reporter in 2013 that an ADHD disease awareness video that supports the safety of stimulant drugs while leaving out their risks is misleading and irresponsible.

Still, disease awareness does much of the heavy lifting in today’s Pharma marketing environment. “Disease awareness offers two primary benefit pathways for the brand that successfully engages it,” says a drug marketing article. It “can provide a lead generation source for later branded outreach” and it “offers an opportunity to inspire patients to some beneficial action or actions.”

Cynics may ask, benefit for whom?

Another drug marketing site agrees. “Disease awareness campaigns have long been fundamental to pharmaceutical and biotechnology marketing and medical teams’ respective communication plans,” it says. Disease awareness is a “tool to ensure that the right patients are prescribed the right treatments” and is “particularly important for diseases in which symptoms are nonspecific, incidence is infrequent, or treatments are not curative. For these diseases, physicians and midlevel practitioners are less likely to be familiar with clinical developments or advances in the understanding of diagnostic factors and disease progression.”

Analyzing how successful such disease awareness campaigns are, The Guardian also weighed in:

“Typically, a corporate-sponsored ‘disease awareness’ campaign focuses on a mild psychiatric condition with a large pool of potential sufferers. Companies fund studies that prove the drug’s efficacy in treating the affliction, a necessary step in obtaining FDA approval for a new use, or ‘indication.’ Prominent doctors are enlisted to publicly affirm the malady’s ubiquity, then public-relations firms launch campaigns to promote the new disease, using dramatic statistics from corporate- sponsored studies.”

“Finally, patient groups are recruited to serve as the ‘public face’ for the condition, supplying quotes and compelling stories for the media; many of the groups are heavily subsidized by drugmakers, and some operate directly out of the offices of drug companies’ PR firms.”

“Are You Allergic to People?” and Other Aggressive Campaigns 

Are your “allergic” to people?  Do you “blush, sweat, shake—even find it hard to breathe,” when trying to socialize? If so, you may have “social anxiety disorder,” said one of the first “disease awareness” campaigns. It proved very successful. Concocted by the slick PR firm Cohn & Wolfe in 1999 to sell the soon-to-be-marketed SSRI antidepressant Paxil, news outlets operated as Pharma stenographers, reporting that as many as 10 million adults suffered from the “social anxiety” epidemic. Who knew?

After “social anxiety” disease awareness campaign—which coincided with the legalization of DTC advertising in the late 1990s—marketing boomed. Soon people began treating their “seasonal allergies,” dry eyes,  Gastroesophageal Reflux Disease (GERD), Restless Legs syndrome, high cholesterol, and of course, depression, like never before. The subjects of disease awareness marketing often had nonspecific symptoms and vague diagnostic criteria.

Do you remember hearing about the many women suffering from “Hypoactive Sexual Desire Disorder” (HSDD) a few years ago? The disease awareness campaign was sponsored by drug giant Boehringer Ingelheim, to help sell its drug Addyi (flibanserin), which was moving toward FDA approval. The drug was later acquired by Sprout. The marketing included TV personality Lisa Rinna in an aggressive campaign called “Sex Brain Body: Make the Connection.”

Boehringer Ingelheim also wined and dined potential medical supporters, remembers London sex researcher Petra Boynton. “I’ve had two invitations to attend two two-day long ‘training days’ at top London hotels (with an honorarium of £1000 per session),” she wrote on a blog. “My understanding of the aim of these events were to highlight FSD (or more specifically Hypoactive Sexual Desire Disorder) as a problem and inform practitioners about treatment approaches.”

Though she declined to attend, Boehringer Ingelheim also asked Boynton to write a paper for the British Journal of Sexual Medicine. “They had clear instructions about what they wanted me to say and how this would set the scene that HSDD was a prevalent and distressing problem,” she remembers.

Men are not exempt from disease awareness marketing. Low testosterone or “Low T” has been aggressively marketed by Big Pharma, though it occurs rarely, according to experts.

“True instances of testosterone deficiency such as hypogonadism are rare—less than one half of one percent of men have this problem,”  Boston University School of Medicine longevity expert Thomas Perls, MD told me in an interview. “Since massive marketing campaigns emerged in the late 1980s claiming that common symptoms like lack of energy, poor sleep, poor libido could be treated with testosterone, the number of men labeled with this disease skyrocketed. The new syndrome of aging-related low testosterone was facilitated by doctors’ organizations that allowed new and much less rigorous and specific definitions of hypogonadism. Some of these consensus panels were sponsored by pharmaceutical companies making and marketing testosterone.”

Nor are the “Low T” products necessarily safe. “The use of testosterone products (androgens) in men outside very limited indications is not a harmless measure,” says an article on Healthy Skepticism:

“Severe adverse effects from inappropriate use of androgens include sodium and water retention, oedema, acne, gynaecomastia, impotence, testicular atrophy, priapism, inhibition of spermatogenesis, degenerative changes in seminiferous tubules, impaired glucose tolerance, hypercalcemia, polycythaemia, decreased clotting factors, increased LDL cholesterol, aggressive behaviour, psychotic symptoms, physical and psychological dependence, withdrawal symptoms etc.”

Non-24 Hour Sleep Wake Disorder and Other Diseases Brought to Our “Awareness”

In 2009, CBS News reported that drugmakers had spent hundreds of millions of dollars to raise awareness of fibromyalgia which it called, “a murky illness, helping boost sales of pills recently approved as treatments and drowning out unresolved questions—including whether it’s a real disease at all.”

Eli Lilly and Pfizer had donated more than $6 million to “nonprofit groups for medical conferences and educational campaigns,” reported CBS. While fibromyalgia, like most diseases given such “awareness,” certainly exists, the timing and estimation of how many people “suffer” was totally orchestrated by Pharma and its many patient front-groups.

Like most disease awareness marketing, the cause of fibromyalgia is unknown, observed CBS, and “there are no tests to confirm a diagnosis. Many patients also fit the criteria for chronic fatigue syndrome and other pain ailments.”

Some diseases given awareness are so rare, they almost appear a satire or a joke. How many people, for example, suffer from the sleep disorders nacrolepsy, Shift Work Sleep Disorder and Non-24 Hour Sleep Wake Disorder, the latter almost always only affecting blind people? That has not stopped Pharma from scaring people with symptoms and quizzes to ask their doctors about and setting up unbranded websites to “educate” about the diseases.

For example the unbranded website Wake Up Narcolepsy, says “It can take as long as 10 to 15 years after the first symptoms appear before Narcolepsy is recognized and diagnosed. Many doctors are unfamiliar with Narcolepsy, even though it affects 1 in 2,000 people. Narcolepsy symptoms are like symptoms of other illnesses, such as infections, depression and other sleep disorders.” Narcolepsy can “sometimes be mistaken for a learning problem, seizure and even laziness, especially in school-aged children and teens. When Narcolepsy symptoms are mild, the disorder is even harder to diagnose.” The disease awareness is courtesy of Jazz Pharmaceuticals, not mentioned on the unbranded website, which makes the narcolepsy drug Xyrem that costs up to $35,000 for one year.

Of course, some disease awareness campaigns have been chillingly successful. A 2014 report from the Centers for Disease Control and Prevention revealed that more than 10,000 two- and three-year-olds in the US are now on the stimulants Ritalin, Adderall and their cousins for attention deficit hyperactivity disorder (ADHD). While ADHD is not a made-up disease, diagnosing children including preschoolers with behavioral and psychiatric conditions was unheard of until Pharma had expensive drugs to treat them. Ten years ago, the nation was sickened by the drug-related death of Rebecca Riley, treated for bipolar disorder, even though she was just four years old.

Adult ADHD is also increasingly given awareness. In 2009, Shire launched a Nationwide Adult ADHD Mobile Awareness Tour, which included a “mobile screening initiative” called the RoADHD Trip (get it?)

The caravan, anchored by “the RoADHD Trip Tractor Trailer,” which turned into a tented area with eight “self-screening stations,” traveled the country, visiting major cities such as Chicago, Indianapolis and Dallas. In each city, Shire said it was partnering with the Attention Deficit Disorder Association, “a leading adult ADHD patient advocacy organization, in an effort to assist up to 20,000 adults to self-screen for this disorder.”

Why Unbranded Ads Solve Pharma Problems

It is no secret that the last few years have been very bad for Pharma. The antics of drug “re-pricers” like Martin Shkreli and Valeant Pharmaceuticals who buy old drugs and jack their prices, Pharma companies like Pfizer trying to flee US taxes by merging overseas (even though they live on our taxes), and the emerging evidence of how Pharma contributed to current opioid and heroin addiction problems have made Pharma a disdained industry. Even the American Medical Association (AMA) has declared its opposition to Pharma’s aggressive ways, suggesting limits on DTC drug advertising.

Pharma knows it is unliked, and like other unpopular industries—the chemical industry, seed companies like Monsanto, the gas and oil industry complex, Wall Street—it fears grassroots comments and Internet feedback which it cannot buy off.

“Adverse event reporting has been a concern for pharma since the advent of social media,” admits an article on Medical Marketing and Media addressing how the industry faces serious “public distrust” on social media. Rather than get defensive over “adverse reports” from patients or fight back, a marketing expert quoted in the article suggests “the way to earn trust is to show empathy, speak in a way that is credible to the patient and remember that social media is a relationship.” This sounds a lot like the “GMO Answers” approach that Monsanto and other seed giants use to address fears people have over genetically modified crops—using industry operatives to spin answers to questions.

Another Pharma marketer agrees, cautioning not to let bad patient buzz overshadow “the work you’ve done online….The vocal minority now becomes the published majority, and that becomes the experience that everyone attaches themselves to….Putting your head in the sand and ignoring these people is the wrong way to think about how people are experiencing your brand or your content.”

In addition to using industry shills, says the marketer, neutralize angry patients by encouraging them to tell their own stories—a tactic used by many Pharma-funded disease awareness sites.

In March I wrote in The Influence about the new campaign from PhRMA, the industry’s trade group, to defend outrageous drug prices: “Hope to Cures.” Like disease awareness marketing, the campaign depicts patient—like “Theresa,” diagnosed with thyroid cancer at 57, and “Charis,” suffering from ankylosing spondylitis at age 29—up close and personal. The profiles are intentionally tear-jerking, to show the good Pharma does and shame anyone who thinks it is profiteering.

The Celebrities Who Spread Disease Awareness

In addition to patient profiles, Pharma has used celebrity endorsements to sell drugs and raise disease awareness. Television personalities Joan Lunden and baseball player Mike Piazza pushed the allergy pill Claritin. Dorothy Hamill and the track star then known as Bruce Jenner pushed the pain pill Vioxx, which caused 27,785 heart attacks and sudden cardiac deaths.

But when actress Kathleen Turner appeared on CNN, she simply shared her battle with rheumatoid arthritis for disease awareness, not mentioning the arthritis drug she was raising awareness for or the manufacturers who were funding her, reported the Philadelphia Inquirer. Nor did TV talk show host Meredith Vieira mention any Merck bone products while “educating” women on the importance of strong bones in a national campaign which offered—any guesses?–free bone density screening. Sally Field, known as the family matriarch in the TV drama Brothers and Sisters, was the face of the bone disease awareness risks for women, not afraid to name the drug Boniva. “You have only one body and one life,” said Field in the ads which also claimed the drug “reversed” one loss. Since Vieira and Field raised “awareness” about the risk of bone thinning, the class of drugs they promoted—called bisphosphonates—has been linked to cancer, relentless pain, heart problems, jaw necrosis and the very fractures they were supposed to prevent.

More recently, tennis star Monica Seles raised awareness for “binge eating disorder,” actress Marcia Cross promoted awareness of migraine headaches and race car driver Danica Patrick promoted awareness of chronic obstructive pulmonary disease. Singer LeAnn Rimes has also promoted awareness of eczema and Paula Deen awareness of diabetes no doubt enabled by some of her rich recipes.

How to Get Nearer the Truth

One of the most dangerous parts of disease awareness is the lack of clear risks and warnings for the drugs that are implicitly promoted. We hear how Pharma valiantly battled patients’ diseases but nothing about the side effects (and prices) of the drugs in question.

One of the best sites to get the other side of the story is askapatient.com, a Webby award-winning, patient-driven site that lets you “Learn from the experience of real people who have taken drug treatments” and “Share your side effects or success stories” free from Pharma influence. Patients can read the thousands of entries about an individual drug, see a summary of effects for a drug based on FDA Medwatch data, and search for specific side effects.

Another site that quickly lets you see a drug’s side effects without Pharma influence and how frequent the side effects occur is HealthBee. “The short history behind the site was an attempt to figure out how prevalent some of the side effects of certain drugs that family members were taking were,” the developers told me. Since nothing seemed to exist and information was “very limited and lacking” the founders created the site themselves in 2013.

Finally, Worst Pills, published by the well respected Public Citizen, is the granddaddy of non-Pharma-influenced drug information sites. For a small subscription fee, patients can learn about the drugs they are taking or might take, as well as reading important reported stories like “Is XARELTO Really the ‘Right Move’ for Patients With Blood Clots or Risk for Stroke?” and “The Best Drug for Severe Acute Low Back Pain.”

The two big caveats to keep in mind about disease awareness advertising are: You probably don’t have the condition advertised; and if you do, the drug treatment marketed for it may have many buried risks.