From the Executive Director: Conflict Free, So We Can Tell the Truth

By Karuna Jaggar, Executive Director

My introduction to breast cancer was more than 20 years ago, with the shocking diagnosis of a beloved family member. I jumped into the deep end. I learned everything I could about the disease, traveled out of state to attend medical appointments, and eventually took time out of graduate school to help my loved one navigate her diagnosis and treatment plan. When she had a recurrence several years later, I was lucky to have time off work that I could use to travel again and provide in-person support.

In between those two diagnoses, another loved one was diagnosed with breast cancer, someone for whom I’d trade my life. And once again, I got to work setting up and going to medical appointments with them. This time, learning the intricacies of a different breast cancer subtype. Because I knew my job was to make sure my loved one had the information necessary to make a series of deeply personal and life-changing decisions.

By the time I came to Breast Cancer Action in 2011, I knew the necessity of unbiased, balanced, accessible information—and I knew how hard it can be to find. I also knew that when you’re choosing between what can feel like a host of bad options when it comes to breast cancer treatments, there really is no single “right” answer.

The best statistics can’t predict with certainty what will happen for any of us, individually. There are always people who do better or worse than the statistics. But we all need balanced, unbiased, and understandable information so we can make the decision that’s right for us. And our choices deserve respect—because no one knows what’s best for someone else, and we each have the right to decide for ourselves.

That’s where Breast Cancer Action comes in. Making sure everyone has balanced information needed to make fully informed decisions about breast cancer is at the core of our work, and can be traced all the way back to when our founders spent countless hours on the phone providing one-on-one information and resources to women living with a breast cancer diagnosis or grappling with the side effects of treatment.  

We aren’t doctors, and we don’t give second opinions. But here at Breast Cancer Action we do provide essential tools and information to help support people in making their own informed decisions. And because we don’t take industry funding, we always tell the truth about breast cancer, and we can always provide balanced information about both potential benefits and potential harms. Because the truth is, there’s no one size fits all when it comes to breast cancer.

Anyone who’s been through a breast cancer diagnosis knows there are so many choices to make and things to consider, in addition to the tradeoffs of different treatments, like what kind of surgery to choose, and how quickly to move through the process of making decisions. Deeply personal choices.

It’s why we provide balanced information about treatment options, including ways to manage and mitigate side effects, through our 1-800 line, our webinars, factsheets and brochures, and our analysis of breast cancer research.

Our independence and our ability to provide unbiased information is what sets us apart in the breast cancer movement. You can trust Pharma and biotech aren’t behind the scenes influencing what we say. And this matters because, unfortunately, the influence of industry extends to virtually every aspect of medicine and health care: from funding research, medical journals that publish studies, universities, nonprofits, and everything in between.

This isn’t to say there aren’t well-intentioned, dedicated, compassionate individuals who devote their lives to providing amazing care and doing important research. But these people work within a system where the influence of industry is outsized, and even corrupting. And Biotech and Pharma representatives are not only filling key decision making roles in our regulatory agencies, they’re even turning up in operating rooms at the shoulder of surgeons.

You may have seen the recent scandal that began at Memorial Sloan Kettering in New York, one of the most prestigious cancer centers and research institutions. The chief medical officer and leading breast cancer researcher, Dr. José Baselga, didn’t disclose millions of dollars in payments from drug and healthcare companies in dozens of published articles in prestigious medical journals. This matters.

As the New York Times reported, Dr. Baselga received more than $3 million from the drug-company Roche, which is interesting given he also publicly promoted and hyped two breast cancer drugs made by Roche that others considered disappointing. In a stark example, Dr. Baselga encouraged oncologists to treat some patients by adding a newer, more expensive drug, called Perjeta, to the established standard of using Herceptin. This despite the fact that when Perjeta’s results were presented at a conference, they were so underwhelming that Roche’s stock fell five percent.

Dr. Baselga isn’t the only doctor to sit on a corporate Board. But Board positions require that their members be responsible for and work to protect the financial interests of those companies—even while those same people, doctors, are treating patients.

You can see the tension.

The truth is data looks different from a patient perspective. When researchers say a drug is “well-tolerated,” but more than a third of patients in a study stop taking it, this speaks volumes.

Again, this isn’t to suggest that most physicians are corrupt. Far from it. But the influence and power of industry is enormous. And Dr. Baselga’s isn’t an isolated case. Often, these are the so-called “thought leaders” who have the power to grant research funds, tenure, a new job, or otherwise flex their muscle. And it’s the reason industry pays them. Recent reporting about other doctors’ previously undisclosed financial relationships with healthcare companies have highlighted concerns about potential bias in medical practice.

And now we’re learning that industry has also begun to pay individual breast cancer patients who have a large following on social media, so called “influencers.” It’s one thing for celebrities to push fashion or products on social media, but the stakes are so much higher when trusted peers in online forums cash in on their personal experience and relationships—and then don’t disclose their financial ties. Too often, there’s no way to know if someone on social media is being paid to promote a particular treatment or approach.

No one likes to think they can be bought. But money is power. And industry wouldn’t pay up if it didn’t pay off for them.

Breast Cancer Action isn’t under corporate influence, financial or otherwise, and we’ll continue to speak out. Our voice matters. And I’m often struck by the number of doctors, academics, and nonprofit staff who come up to me to thank me for saying what they felt they couldn’t.

Thank you for standing with us and funding our work so we can always provide patient-centered analysis and information. Thanks to you, we are the watchdog for the breast cancer movement.

This entry was posted in Articles, BCA News, E-Alerts.

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