Twitter Becomes Forum for Opdivo Coverage Dispute

Meir Rinde
Published: Wednesday, Apr 20, 2016
Ruth Linden, PhD

Ruth Linden, PhD

The struggle to get insurance approvals for tests and treatments is maddeningly familiar to many oncologists. Doctors complain about denials and lengthy appeal processes to their staff, families, friends, and each other, whether at the office water cooler or at professional conferences.

They typically do not go public with specific grievances, but on occasion, frustration builds to such a point that a physician lashes out in an effort to expose and reverse an apparently callous and inexplicable decision. Thanks to social media sites like Twitter and Facebook, such protests are easy to broadcast and can instantly reach a large audience, affecting payer–provider relationships and exposing the inherent tension between treatment needs and cost-control goals.

H. Jack West, MD, medical director of the Thoracic Oncology Program at the Swedish Cancer Institute in Seattle, recently found himself at that peak of frustration. A patient with non–small cell lung cancer (NSCLC) and an EGFR mutation was progressing rapidly when she was off osimertinib (Tagrisso), and West wanted the option of giving her giving her nivolumab (Opdivo) concurrent with osimertinib if the cancer worsened.

Last year, the FDA approved nivolumab, a melanoma drug, for treatment of advanced squamous NSCLC that has stopped responding to chemotherapy, as well as non-squamous NSCLC. Despite its high cost of $150,000 a year, nivolumab has rapidly been adopted for lung cancer. However, in March, Regence BlueShield, the insurer for West’s patient, denied coverage for the drug. West said he initially was given no explanation for the decision. 

West is an active Twitter user, posting oncology studies, articles on healthcare policy, and other subjects both medicine-related and not. He comments on the efficacy of various therapies, responds to others’ posts, and regularly hosts online chats where he answers patients’ questions using the #lcsm (lung cancer) and #bcsm (breast cancer) hashtags.

Upon hearing about the denial, he fired off a tweet directed at Regence that protested the decision and asked his 8900 followers to retweet the message to their own Twitter followers. That was a departure from his usual practice of phoning an insurer to find out why coverage had been denied.

“Some of the time, I would have phoned, but at the end of a long day, after having gotten a few too many denials for somewhat capricious reasons, I said, ‘No, this is ridiculous,’” West said. “It was easier to fire off a thoughtful, but still somewhat reflexive, ‘Damn the insurance companies’ kind of thing, rather than pick up a phone, wait on hold in a phone tree, and wait for a call back to find out what the rationale was.”

The Internet is awash with such protests, although usually they come from patients and their families rather than physicians. In addition to Twitter and Facebook posts, they appear as petitions on, donation appeals on GoFundMe, and testimonials on blogs and YouTube. These sites are, in fact, just the latest vehicles in a history of patient activism that goes back decades, said Ruth Linden, PhD, an independent health advocate and bioethicist in San Francisco.

In the 1990s, AIDS activists would jam up drug companies’ fax and phone lines to force them to pay attention to demands for access to new drugs, she recalled. Breast cancer activists who wanted to be treated with trastuzumab (Herceptin) adopted similarly confrontational methods, driving onto the lawn at Genentech’s campus and honking their horns. Their efforts led to the creation of the first expanded access arm of a cancer clinical trial, said Linden, who participated in the Herceptin negotiations. All of these methods, whether automotive or digital, have had the same goal of forcing companies that control healthcare resources to take into account the needs of their customers or the general public, she said.

“Social media strips away the veil of secrecy and opacity that surrounds decision making about who gets the care they need and whose care is denied. Social media demands accountability and substantiation. A ‘Sorry, no, we wish you well,’ is not enough,” Linden said. “Just as physicians must provide evidence to insurance companies supporting their patients' need for treatment, insurance companies must substantiate their denial of approval for therapies and procedures. Social media pushes that envelope, because the whole world is watching.”

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