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Paying the Price for Misinformation

Paying the Price for Misinformation
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Published on April 25, 2018

“balancing scale”

We continue to be concerned about mudslinging in the debate about the cost of healthcare in America, and especially the cost of cancer care. How do we reign it in while still pursuing research-intensive cures? And who are “the bad guys” that lead to such high costs? It’s not simple, despite what some politicians say. And that’s my worry, that misunderstanding will lead to heavy-handed legislation at state and federal levels. So here’s a new cautionary message that we need to take a wider, more comprehensive view fueled by fairness and always doing what’s safe and effective for patients.

Some people we know and respect raised concerns about the pharmaceutical industry after reading an article entitled, “Drugmaker Group Sets Lobbying Record.” The article does raise concerns…it is also misleading.

We are not here to blindly defend the pharmaceutical industry, but we are concerned when organizations and foundations use misdirection to steer patients away from the real source of problems about prescription pricing and access. We are concerned because that same misdirection also steers us away from meaningful solutions and can actually keep us away from greater access to life-changing medications.

The crux of the article states that the pharmaceutical trade organization “lobbied against legislation to stop drugmakers from denying generic-drug companies the ability to study their products to bring low-cost competition to market.”

This is not true.

What the pharmaceutical industry is really doing is protecting patients who take medications with serious potential side effects, and protecting those drugs from being pulled off the market. If the drugs are pulled off the market, sure, companies lose revenue, but don’t patients lose if safety protocols could have prevented the removal?

The article is talking about stringent protocols called REMS (Risk Evaluation and Mitigation Strategies) required by the Food and Drug Administration for about 70 drugs to prevent terrible birth defects and other disastrous complications from the unsafe use of these medicines.

Without these safety protocols the FDA would never have deemed these medications safe enough to be approved, but they are vital and innovative, including the first gene therapy and a new class of CAR T-cell therapies to treat deadly cancers, two of the greatest breakthroughs just last year. 

Bypassing Safety

As our friend and fellow cancer patient Don Wright wrote, the pharmaceutical industry was protecting us from a proposal that “would force brand manufacturers to sell samples of high-risk drugs to generic developers without requiring generic companies to follow the same rigorous precautions patients rely on.” 

Do we want safety protocols to be weakened or reduced? Of course not.

We also have to acknowledge, the pharmaceutical manufacturers are right to be concerned about their own well-being. Courts have ruled that brand name manufactures CAN be held liable for adverse events from generic versions of their drug

The article fails to mention that one of the companies named did in fact reach agreement with a generic company as far back as 2015 to market their cancer drug beforethe patent expires. The article didn’t mention that one of the generic companies pushing against these safety rules is Mylan that raised the price of their EpiPen as much as 400 percent. 

The article says pharma companies spent an average of $715 thousand per company on lobbying. It doesn’t say that this spending was in response to $2.8 million per organization spent by an anti-pharma foundation, according to healthcare economist Robert Goldberg, PhD.

Does that mean all is well within the pharmaceutical industry? Of course not. As another recent article points out, “Most people recognize that the American biopharmaceutical industry is a complicated hodgepodge of elements and motivations that—to some—appear simultaneously ennobling and dispiriting. It is heavily subsidized by taxpayers, yet also must satisfy Wall Street as it raises billions of dollars of private capital necessary to bring safe and effective medicines to patients.”

As I recently wrote about recommendations from the President’s Cancer Panel I served on, “The Panel understands the tension between the value of these new therapies to patients and the need for patients to be able to afford them.” But the bottom line is, “all parties to the healthcare system must work together: ‘drug developers and manufacturers, policy makers, government, public and private payers, healthcare institutions and systems, providers and patients.’” 

Articles and news reports that tell a partial story do not help us all “work together.” To the contrary, they build artificial and unwarranted animosities and concerns. So before we jump to conclusions, let’s make sure we have all of the facts in hand, and that’s what we try to do here with our Power Perspectives.

I welcome your thoughts at

Andrew Schorr
Co-Founder, Patient Power LLC

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.


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