Last March, Vinay Prasad, a doctor in Portland, Oregon, caught wind of an episode on the long-running soap opera General Hospital. One of the main characters on the show, a fellow at his hospital told him, had been diagnosed with an extremely rare bone marrow cancer, polycythemia vera.

Prasad’s mind started spinning. And he felt suspicious. Of all the diseases out there, why would the writers at General Hospital feature an illness that affects only two in 100,000 people?

So Prasad and his colleague Sham Mailankody began to search for answers. They published their jaw-dropping findings in a new paper in JAMA: Polycythemia vera got a mention on America’s oldest soap opera because a drug company, Incyte, asked it to.

Incyte’s only FDA-approved drug, ruxolitinib, happens to treat the cancer. The General Hospital appearance was the company’s attempt to raise awareness about the rare disease — and possibly to sell more of its drug.

“Writing a [rare disease] into a main character plot on daytime soap opera to our knowledge is unprecedented,” Prasad said.

It may also lead to more people being diagnosed with an illness they don’t actually have or more people taking a drug that’s not good for them. “If every viewer of General Hospital heard about PV and went to their doc to be tested for PV, we would find way more PV than actually exists,” he said.

General Hospital takes “disease awareness” campaigning to absurd new heights

The Food and Drug Administration regulates direct-to-consumer marketing of pharmaceutical products — but it doesn’t regulate another common pharmaceutical marketing tactic called "disease awareness."

The idea is that a spokesperson, usually a beloved celebrity like Dr. Phil or Paula Deen, calls attention to a disease with the aim of building the market of patients who will take the company's medication.

These campaigns blend marketing and health messages, and usually involve some subtle hawking of pharmaceuticals, often at a time when there's a push within the company to ramp up sales or just before a new drug is coming to market. And research suggests they’re really effective at selling drugs, even when a drug name isn’t mentioned at all.

But Incyte’s partnership with General Hospital was novel: Instead of getting a celebrity on daytime talk show talking about a disease, Incyte got the show’s producers to write it right into the plot.

The episode describes polycythemia vera, and depicts a blood clot one of General Hospital’s lead characters, Anna Devane, experienced as a consequence of the cancer. Devane’s doctor warns her that if she leaves her disease untreated, she may suffer a heart attack or stroke. When the doctor suggests she start on the usual treatments for the disease — anticoagulation drugs and drawing blood, Devane asks “But this protocol sounds like you are treating the symptoms of this cancer; how do we beat it?”

According to Prasad’s paper, these comments “may constitute subtle promotion of ruxolitinib.”

With a message this subtle, “there’s no way you would ever know it was connected to the drug company,” said Lisa Schwartz, a Dartmouth professor of medicine who studies pharmaceutical marketing. “Your natural skepticism that comes up when you see advertising is totally down because you don’t know the drug company has any role in the message you’re getting.”

The public health problem with the General Hospital plot

Television is a powerful medium for health messages. Advocacy organizations have long used soap operas to educate the public about disease threats, and public health campaigners have also embedded their health messages into children’s shows like Sesame Street.

But Big Pharma’s disease awareness campaigning is more problematic. “It blurs the line between advertising and a public health message,” Schwartz said. Low-testosterone, restless leg syndrome, ADHD — in her research she’s found all these diseases have had pharma-backed disease awareness campaigns behind them that contributed to over-diagnosis.

That’s also what worries Prasad about the General Hospital example. While it’ll surely raise awareness about the disease for some people who actually have an undiagnosed case, it also might lead to over-diagnosis.

That’s because the diagnosis for polycythemia vera is very fungible, Prasad said. The cancer is associated with a genetic mutation that’s also common in healthy patients. “There’s no single diagnostic test nor a combination of tests to make the diagnosis of PV,” he said. So there’s some wiggle room with the diagnosis.

Incyte’s drug is also only approved for a very narrow indication of polycythemia vera, not for all cases. (The FDA approved ruxolitinib as a second line therapy — to be used after other drugs have been tried — and specifically for people who haven’t responded to or can’t tolerate the drug hydroxyurea, who have an enlarged spleen, and who are dependent on bloodletting, another common PV treatment.)

The drug also carries serious side effects: severe anemia and a heightened risk of diseases like TB and viral infections. So Prasad worried some patients may push to start using the drug even if it’s not appropriate for them.

“[The General Hospital plot] is a way to drum up market share,” Prasad said. “If you get all these people who watch the show concerned about this disease, if they all go get tested, [you’ll find more patients].”

Will this be the first of many examples of beloved TV shows becoming stealth vehicles for selling drugs? Schwartz hoped not. “This just seems like a terrible precedent and something needs to be addressed.”