Inside pharma's trust problem

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Over the past year, pharmaceutical companies and payers have been locked in a bruising public relations battle. Both sides engage in regular rounds of finger pointing, blaming the other for rising healthcare and drug costs. 

It's no surprise, then, that Americans' trust in both camps has fallen significantly. According to Edelman's annual trust barometer survey, only 46% of consumers trust health insurance companies, down 9% from 2017. 

Pharma fared even worse. Just 38% of Americans say they trust pharma companies, down 13% from last year. That's a bad showing, even in healthcare, which was rated the least trusted industry out of the 15 included in the survey. 

Looking to better understand the reasons behind pharma's plummeting trustability rating, MM&M turned to patient influencers and activists, individuals who have their finger on the pulse of patient sentiment toward big pharma. Following are a few of their insights into pharma's trust problem. (All comments were drawn from virtual interviews* among patient leaders who are part of the Wego Health network.)

Pharma is taking much of the blame for high drug prices. 

The healthcare system is complex, with multiple parties playing a role in the sky-high prices of many prescription drugs and life-saving treatments. Pharma likes to pin the blame on pharmacy benefit managers (for holding onto rebates) and insurers (for passing on costs to consumers through high deductible plans and out-of-pocket costs). 

While there's some truth to both these argument, at the end of the day, pharma companies set the list prices. “We don't know how they come up with these prices, but we just know that prices for medications are skyrocketing,” said fibromyalgia advocate Kerry Wong. 

Martin Shkreli may have gained notoriety for raising the price of an HIV drug by more than 5,000% in 2015, but in her view, his actions were simply a dramatic example of a common industry practice, in which companies raise the price of old drugs. “There's no reason for it, or no reason we are aware of,” she said. “It seems like they are just out for themselves.” 

Cara Richardson, who has Type 1 diabetes and blogs about the condition, blames pharma companies, including Eli Lilly, for rising insulin costs. (The typical cost for patients rose from $40 a vial to $130 from 2002 to 2013.) “They know we depend on it to live, and they can charge what they want,” she said. “The bad part is, when you can't afford to pay it, people die.” 

There's an overwhelming feeling of anger and confusion about rising drug prices, and much of it is directed squarely at pharma, agrees Jaime Weinstein, an advocate for patients with Crohn's disease. The question often becomes: “Why is this company charging so much money for the medications I need to keep me alive?”

The distrust runs so deep that it's birthed a wide-spread conspiracy theory.

“Many patients walk around with the misconception that the cure to their disease is known, but there would be no money left in it for pharma if patients are cured,” Weinstein said. She believes manufacturers need to do more to address and tamp down this (false) conspiracy theory, one that was referenced by other patient advocates. 

Marisa Lauren Troy, an IBD patient advocate, hears this same complaint from patients who believe Big Pharma has “the cure or answer to certain conditions or diseases, but they want to push meds for financial gain.”

As does Brigid Laurito, who runs an online support group for people with rheumatoid arthritis. “A lot of people in my community believe there could be a cure for their condition, but the cure is being held back so pharma companies can make money off patients being sick.” 

Transparency around pricing would go a long way to improving trust. 

Drugmakers often justify high prices by talking about the heavy investment required to produce new drugs, many of which will flame out. For breakthrough drugs, there's truth to this argument, Weinstein says. 

“Letting patients know why the cost model is the way it is would help drive trust,” he said. “If people understood that it takes $500 million to develop one drug that may or may not come to market, I think people would begin to understand why some medications are more costly in the beginning.” 

The secretive relationships among manufacturers, PBMs, and insurers could also use some illumination. Patients are left in the dark regarding negotiations between the three parties, which “can really hurt their perception of pharma,” said Kirsten Schultz, a blogger, sex educator, and advocate for those living with chronic pain. 

Being more transparent about these relationships could spread the blame (and there's plenty to go around) to include PBMs and payers, who are also responsible, said Amanda John, an active member of the RA community who blogs about living with the disorder. “I don't think patients have an overall understanding of who is contributing to the cost of healthcare. I don't think they always understand how these relationships work.” 

Patients generally accept a drug's clinical information as accurate, but not the marketing messages around it. 

The consensus among influencers was that in general, patients trust information from pharma companies regarding a drug's side effects, safety, efficacy, and other clinical information. “Pretty much every patient I know is familiar with the rigor that goes into FDA approvals,” said John, a sentiment echoed by Troy, Wong, and Richardson. 

There was, however, a general distaste for the way in which this information is conveyed through advertising, particularly the use of actors to portray patient testimonials. Patient influencers are perhaps not the most unbiased group in this regard, but there were strong calls for companies to incorporate more actual patients in their campaigns

“When you are in bed, and you don't feel good, and you see people feeling great in commercials, and you know you're on that same medication, it's definitely frustrating,” said Laurito.

*A virtual interview is a recorded voice response from an influencer in Wego's private member group, as culled using Wego Health's Truvio mobile research platform.

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