Twitter Becomes Forum for Opdivo Coverage Dispute

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 Change.org, 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.”

West said he decided to post on Twitter because Regence has an account there and he knew the message would get their attention. “I got more than 150 retweets in 24 hours, and I knew they would really not savor being talked about in that way. That was a very deliberate thing,” he said. “My feeling is, if companies are going to deny things and they have kind of occult policies of what they will or won't favor, they should be able to defend that in the light of day. That's fine. I'm happy to debate in an open setting, with the patients and the media watching, what you decide you want to cover.”

Dramatic actions that cut through the thicket of insurer bureaucracies may appeal to some doctors due to the perception that payers have made it tougher to get coverage approvals, particularly for expensive therapies and tests, off-label drug use, and clinical trials. West said payers often make providers jump through “extra hoops” for expensive medicine, and save money when doctors don’t bother to file appeals.

While nivolumab is approved for NSCLC, the labeling presumes it is being used alone rather than in combination with an EGFR inhibitor. The use West was proposing was in a “gray area,” technically not off-label, but not really on-label either, he said.

A survey of oncology practices in 2013 found that 41% had reduced their off-label use of anti-cancer therapies over the previous five years, with most of them citing coverage and reimbursement challenges as the reasons, according to a report co-sponsored by the Association of Community Cancer Centers. Oncologists say that getting approvals for MRIs has also become more arduous as insurers try to avoid paying for unnecessary scans.

“We often get a denial even when the indications are very clear-cut. For example, BRCA-positive—nobody’s going to argue that a breast MRI isn't indicated,” said Deanna Attai, MD, breast surgeon and assistant clinical professor of surgery at University of California Los Angeles. “I end up having to do a peer-to-peer with the medical director, and in about three minutes, it’s ‘Oh, okay, I'll approve it.’ But this is two weeks later, and there’s staff time, and patient anxiety, and my time and everything else. It just adds to the irritation factor.

“I am having more conversations with medical directors than I ever have in 20 years of practice. We're just having a harder time getting standard-of-care stuff approved than I ever have before,” she said.

Attai is active on Twitter and describes herself as a “big fan” of West. But although she sympathizes with his frustration, she would probably not protest a payer decision on Twitter herself, except perhaps if a patient was being horribly wronged in a clinical situation, she said. She compared tweeting about an insurance denial to posting about some personal nuisance, like a canceled flight, that would seem trivial to followers who have serious problems like metastatic breast cancer. “For me personally, as a physician, I just don’t think that’s appropriate,” she said.

Matthew Katz, MD, medical director of radiation oncology at Lowell General Hospital in Massachusetts, was also skeptical. Katz has a prominent oncology Twitter presence and said he has seen other doctors advocating for patients online. Advocacy, he said, is an important part of his job. But although he often finds dealing with payers frustrating, he hasn’t seen evidence that targeting them through social media is more effective than official channels.

“That may not be the best overall policy, to do it in a public setting,” he said. “It may undercut the ability to have an effective direct contact through physician-to-physician lines for appeals.”

Katz suggested that navigating the challenges of limited resources is part of the physician’s duty, even if it is distressing at times. “It's inevitable when I'm trying to look out for the best interests of my patient and I hit a roadblock, that it's going to seem that it's confrontational or an obstacle to the best care,” he said. “At the same time, there's evidence-based medicine and not all doctors practice it. In some ways, it's both frustrating and reassuring that there are certain limits to what physicians can do.”

Evidence, it turns out, was the crux of Regence’s decision. The company called West after he tweeted at them and explained there was no evidence of benefit from simultaneous use of osimertinib and nivolumab. It declined to reverse the denial.

“We understand that a doctor’s primary role is to advocate for their patients—just as it’s our role to work toward ensuring that our coverage decisions are made based on the research in the literature and in keeping health care affordable for all of our members,” a company spokeswoman said in an e-mail. “We believe that the only way to address the amount of waste in the health care system today and keep premiums affordable is to have clear, research-based policies in place.” The company noted that drug spending is skyrocketing and that specialty drugs, while accounting for less than 2% of all prescriptions, make up 30% of prescription drug costs, according to a report by America’s Health Insurance Plans.

Regence said it embraces social media, works to be “transparent and responsive,” and has a team dedicated to monitoring and addressing online comments. “We’re able to stay better connected and more in tune with our doctors, hospitals, and patients because of this. Our aim is to be responsive to our members wherever and whenever they want us on the platform of their choosing,” the company said.

West said Regence’s explanation for the denial was defensible and admitted that his hope for nivolumab’s effectiveness was an “extrapolation” based on a concern that osimertinib alone would not prevent an eventual rebound progression. Studies of combining immunotherapies with EGFR inhibitors are under way, but the results he would need to justify the proposed treatment plan are not yet available, he said. At the same time, he still disagrees with the decision and wishes the insurer had made its reasoning clear from the start. (Regence says the explanation had been provided in a letter; West says pharmacy staff usually interact with payers and notify him of denials.) His patient is doing better, but it’s still possible she’ll need nivolumab in the future, he said.

Some good did come out of the Twitter exchange. A Regence staffer gave West her phone number in case another dispute came up, and he passed it to a colleague whose patient had been denied coverage for a colon cancer drug. When the colleague called and told the insurer it had the wrong information about the patient’s mutation status, the decision was immediately reversed, West said.

Boston Healthcare. Impact of payer coverage and reimbursement policies on off-label use of anticancer therapies. Association of Community Cancer Centers website. http://www.accc-cancer.org/advocacy/pdf/2013-Off-LabelSurvey-Report.pdf. Published October 18, 2013. Accessed April 19, 2016.