A matter of trust: Why anti-vaxxers are wary of Big Pharma

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Recently, an acquaintance — the mother of a young child — popped up in a Facebook thread discussing a Newsweek story about Russian internet trolls spreading anti-vaccine propaganda. She described the decision to vaccinate as a “very hard choice for parents to make these days.” But personally, she wrote, she was staunchly against conventional vaccines due to concerns over underreported side effects and “zero accountability” on the part of the pharmaceutical companies.

“We don’t need Russia trolls to destroy our confidence in the Big Pharma,” she wrote. “The facts did that on their own.”

This sort of “vaccine hesitancy” is on the rise. The World Health Organization identified it as one of the top ten threats to global health in 2019. On April 15, WHO reported preliminary data showing that cases of measles, which claimed the lives of close to an estimated 110,000 people globally in 2017, “rose by 300 percent in the first three months of 2019,” compared to the same time period last year. The U.S. is on track for a record-breaking year. As of April 19, the Centers for Disease Control and Prevention (CDC) reported 626 confirmed cases of measles so far in 2019 — the second-highest yearly total since the disease was considered eliminated in the U.S. in 2000.

That growth is fueled in part by people like my Facebook friend who have lost trust in the systems that are supposed to protect them, according to a recent editorial in the journal The Lancet Infectious Diseases. Part of the problem, according to the editorial board, “is that a lack of faith in government, the health care system, and pharmaceutical companies is not always irrational.” In the Democratic Republic of Congo, for example, they noted that people in regions affected by a deadly outbreak of Ebola are justifiably distrustful of health advice from a government that responded to the crisis by postponing elections — widely viewed as a cynical political move, rather than one motivated by public health concerns.

Similar sentiments of understandable mistrust now percolate in the U.S., the editorial board noted. “In the USA, the country is plagued by prescription opioid misuse fueled by aggressive pharmaceutical marketing,” they noted, “the people of Flint, MI, have been without safe drinking water for three years, and the most basic drugs are often unaffordable because of profit-driven health care.”

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In her posts, my Facebook acquaintance asserted that she had diligently researched the side effects associated with vaccines, and sought out what she believed to be legitimate studies on alternatives. She wasn’t anti-science, she said; she just didn’t trust the science that had been sold to her.

“Little wonder that some individuals question the authorities’ desire to prioritize their wellbeing,” The Lancet editors concluded. “It is impossible to build trust while at the same time abusing it.”

Anyone younger than 40 would not remember a time in America when prescription drugs weren’t hawked on radio, television, and in print like toasters and pickup trucks.

In the early 1980s, a populist conservative movement swept through the country, bringing with it an anti-regulatory groundswell and a rising tide of consumerism — the perfect environment for companies to test the waters with a few print and television ads for prescription drugs. In 1985, the FDA issued a ruling that allowed direct-to-consumer advertising of prescription medicines as long as it provided a “fair balance” of information and “a brief summary” of possible risks. Then, in 1997, the agency opened the floodgates for broadcast ads by allowing advertisers to include only major risks.

Since then, medical marketing has evolved into a sophisticated, high-dollar enterprise that permeates every aspect of the health care system. In a comprehensive analysis published in the Journal of the American Medical Association (JAMA) in January, husband-and-wife team Steven Woloshin and Lisa Schwartz, who served as co-directors of the Center for Medicine and Media at the Dartmouth Institute for Health Policy and Clinical Practice, traced how spending on drug marketing, disease awareness campaigns, health services, and laboratory testing increased from $17.7 billion in 1997 to $29.9 billion in 2016. (Schwartz, a critic of medical excesses and well-known expert on the science of communicating medical evidence passed away last November.)

“What struck us most is just how much marketing, how much promotion there is,” Woloshin, who still runs the center, told me. He put the spending explosion in context: The nearly $30 billion spent on medical marketing was more than five times the Food and Drug Administration’s budget, he noted, and roughly equal to the entire budget of the National Institutes of Health. “If you look at the GDP of countries around the world,” Woloshin added, “that’s the median GDP.”

The most rapid growth has been in direct-to-consumer marketing, which accounted for only 12 percent of expenditures in 1997, but nearly one-third of spending by 2016. Meanwhile, the lion’s share of the marketing dollars are still spent behind the scenes, promoting drugs to health care providers and hospitals through face-to-face sales calls, free samples, meals, travel, speaking fees, and more. All of this has led to more patient visits to doctors and more prescriptions. It also nudges doctors as well as patients to choose newer, more expensive, brand-name drugs over older, cheaper alternatives with a proven track record.

Perhaps not surprisingly, a report by the Lown Institute, a nonprofit think tank focused on issues of medical overuse and underuse, found that Americans — especially older adults — are suffering serious consequences from medication overload. Forty percent of adults aged 65 years and older take five or more medications — a threefold increase from two decades ago. Every year, one in five older Americans suffered adverse effects from a drug; more than a quarter of a million were hospitalized because of it.

While some drugs are truly lifesaving, Shannon Brownlee, a co-author of the report and senior vice president of the Lown Institute, says the benefits of many newer, heavily marketed medications are often marginal at best and can have greater risks than people realize. “The pharmaceutical industry, in selling its products to both patients and clinicians, has effectively created this sort of mirage of how powerfully important these drugs are,” said Brownlee, who also sits on the advisory board of Undark, while “very deliberately” emphasizing positives and downplaying negatives.

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All of this has helped to erode trust in the health care system, Brownlee says. In focus groups the Lown Institute has conducted with people aged 60 and older, Brownlee says that she has been struck by the sadness people expressed over the loss of relationships they once enjoyed with their physicians. There was “a sense that medicine was all about business and all about money,” she says. “And that they were now consumers of health care rather than patients who had a doctor who cared for them — cared about them as well as cared for them.”

Related article:  Viewpoint: Is a coronavirus vaccine on the horizon? Antiquated FDA regulations make it unlikely one will emerge in the US

In that context, it can be easy to see how people like my Facebook acquaintance — intelligent, protective parents — could become jaded and suspicious of vaccines, which they often perceive as just one more product being pushed by Big Pharma.

Last year, a systematic review of 35 studies found that trust plays a major role in people’s decisions about vaccines. People are more likely to get vaccinated if they trust the government, their health care system, their health care provider, or other members of society in general, according to the subsets of studies that looked at those measures. A study published in January in the journal Social Science and Medicine, meanwhile, used interviews and focus groups to explore the levels of trust among 119 whites and African Americans in the companies that make — and the government agencies that promote — the flu vaccine. Among the highlights: “Pharmaceutical companies are widely distrusted, often due to perceived motives.”

A recent survey of 1,500 patient groups from around the world found that fewer than one in 10 people rated the pharmaceutical industry “excellent” or “good” at having fair pricing policies.

As it stands, the U.S. and New Zealand are the only two countries in the world that allow direct-to-consumer advertising of prescription drugs that includes product claims. The American Medical Association has called for a ban on such ads, but in all of my years of reporting on the drug industry, no one I’ve spoken to has thought that likely.

Indeed, even enforcement of existing regulations is lax. Aside from a momentary blip in 2010 when the FDA launched a “bad ad” program, the number of warning letters the agency sent to drugmakers for violating advertising regulations has declined sharply over the last 20 years even as marketing has increased. Last year, a study conducted by Yale researchers published in the Journal of General Internal Medicine revealed that few direct-to-consumer broadcast ads for prescription drugs comply fully with FDA regulations. In their January analysis in JAMA, Woloshin and Schwartz wrote that the FDA and Federal Trade Commission should do a better job of enforcing existing rules, and also develop new ones to address the rise of misleading disease awareness campaigns, especially on social media.

Repeated requests, made through calls and emails to pharmaceutical giants Merck and GlaxoSmithKline, for a response to these sorts of criticisms went unfulfilled. And when asked about the role trust plays in vaccine hesitancy, Holly Campbell, a spokesperson for the industry trade group PhRMA, wrote in an email that she could not speculate on individual motivations. “But,” she wrote, “vaccines are one of the greatest achievements of biomedical science and public health.” She pointed out that vaccines have helped eliminate devastating diseases such as polio and smallpox. And companies are ramping up to produce more. “Today,” she wrote, “there are 264 vaccines in development by biopharmaceutical companies to both prevent and treat diseases.”

Still, the one point in the system that everyone seems to agree has the most potential for building trust is the doctor-patient relationship. “Most of our interviewees trust their personal doctors a lot,” said Amelia Jamison, a faculty research assistant the University of Maryland Center of Health Equity who studied trust related to the flu vaccine.

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“People are more likely to accept vaccines when their health care providers strongly recommend them,” Jamison said. It also helps, she added, when doctors act as role models, and explain to patients why they choose to vaccinate themselves and their own families.

That trust is also a two-way street says Rachel Grob, a senior scientist in the Department of Family Medicine and Community Health at the University of Wisconsin School of Medicine and Public Health. Grob was one of the authors of a recent essay in JAMA detailing how physicians’ trust in patients strengthens the relationship and improves diagnosis and care. Parents have a lot of expertise in their own children, Grob said. They are instinctively protective, and want what’s best for their kids. “Those forms of lay knowledge and expertise need to be genuinely and wholeheartedly acknowledged and validated,” Grob said, while also making sure parents are properly informed about the risks and benefits of various treatment decisions.

My Facebook friend did not find what she needed to allay her concerns in the mainstream health care system. Instead, she said her family had chosen what she considered a safer and effective alternative: homeopathic vaccines. I tried to point out that the research she linked to had not been published in a peer-reviewed journal and contained serious methodological flaws, but she seemed unlikely to be swayed.

“It’s not that I don’t believe vaccines can work — it’s that Big Pharma has lied over and over and over again,” she wrote, adding a summary of her feelings toward drug makers: “I’m not mad because you lied,” she wrote. “I’m mad because I can never trust you again.”

UPDATE: This story has been updated to make clear that while representatives of Merck and GlaxoSmithKline acknowledged Undark’s repeated requests for a response to the many criticisms of their long-standing marketing practices, which were made by both email and phone over the course of several days, neither company actually provided any response to those criticisms.

Teresa Carr is an award-winning, Texas-based journalist with a background in both science and writing, which makes her curious about how the world works. She is a former Consumer Reports editor and writer, and a 2018 Knight Science Journalism Fellow at MIT. In 2019, she began penning the Matters of Fact column for Undark. Follow her on Twitter @TeresaRCarr

A version of this article was originally published on Undark’s website asMany Anti-Vaxxers Don’t Trust Big Pharma. There’s a Reason for That.and has been republished here with permission.

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