Anna Devane lies in a hospital bed surrounded by doctors, one of whom just told her she has cancer. “It’s a scary word, right? We can all admit that,” says a second doctor, Robin Scorpio, who also happens to be Devane’s daughter. This cancer is rare, says the first doctor, and somewhat different. People with the condition, called polycythemia vera, make too many blood cells. This, adds a third doctor, explains Devane’s recent migraines.
“So how do we treat it? Is it … radiation? Chemo?” Devane’s voice cracks. Remarkably, no. The first doctor, a husky-voiced practitioner named Hamilton Finn, tells Devane she needs only a prescription blood thinner and regular phlebotomy—blood letting. Anna shows relief, then irritation. “OK, fine, I can do that,” she says. “But this protocol sounds like you’re treating the symptoms of this cancer. How do we beat it?”
“I’m sorry Anna,” says the third doctor, Griffin Monro. “There’s no cure for this disease.”
This dramatic scene—complete with music and close ups—played out on General Hospital in February. The plot twist grew from a partnership between the show’s producers and the Incyte Pharmaceuticals. Strictly speaking, it is not an advertisement, because the FDA allows companies to fund disease awareness programs. But Incyte makes exactly one drug, and it targets the genetic mutation associated with polycythemia vera. Medical professionals worry that General Hospital‘s plotline blurs the lines between awareness and advertisement.
Vinay Prasad is a real life doctor who works on rare blood diseases at the Oregon Health and Science University in Portland. “I heard about this through the grapevine,” he says. “One of our nurses was home one day watching General Hospital, and told an oncology fellow in my department that there was a character with polycythemia vera.” That stunned him. No more than 100,000 Americans live with PV, making it an ultra-rare blood condition. “PV is this very indolent, mild cancer where you just make a little bit too many red blood cells,” says Prasad. The most common treatment, he says, is exactly what those TV doctors prescribed: a combination of bloodletting and blood-thinning medicines like hydroxyurea or aspirin.
But that’s not the only treatment. About 96 percent of PV patients share a mutation in a gene called JAK2. As it happens, the only FDA-approved drug Incyte Pharmaceuticals sells is a JAK2 inhibitor called ruxolitinib that targets PV and a few similar diseases. Although no one on General Hospital characters mentions ruxolitinib, Prasad says the dialogue during Devane’s diagnosis contains subtle language that might lead viewers to believe they have PV symptoms, and seek out unnecessary treatment.
The FDA has rules about disease awareness, but they far more relaxed than those regulating direct-to-consumer advertising. You know these ads: In the first act, an actor mentions that his herpes/toe fungus/erectile disfunction doesn’t keep him from kayaking/rock climbing/enjoying a fulfilling love life because he takes a drug with a name that sounds like a Lovecraftian Elder God. In the second act, the actor quickly explains that the drug might also cause nausea, vomiting, sweating, fainting, jaundice, bleeding, light-headedness, stroke, blindness … and in a very small number of cases, death. “Talk to your doctor before using [blank].”
Non-branded disease awareness campaigns follow looser rules: They can talk about a medical condition as long as they don’t promote specific treatment. General Hospital followed those rules. However, disease awareness can obliquely prompt people to seek unnecessary treatments. Take the awareness culture surrounding breast cancer. On one hand, many women now regularly check for lumps, and go for screenings. But not all breast cancers are deadly. Some may never become malignant.
But, to quote Robin Scorpio: Cancer is a scary word. So when women find a lump, they are likely to seek treatment. Those treatments come from pharmaceutical companies, which—surprise!—fund many breast cancer awareness efforts. A study published in October in the New England Journal of Medicine found that only about 19 percent of the small tumors women find during early screening are likely to become large.
Drug companies defend their awareness efforts. “Patients suffering from rare diseases often face a dearth of information about their disease and related support,” says Catalina Loveman, an Incyte spokesperson. “As such, it is critical that those who have a voice—companies, advocates and media—do all they can to raise awareness and provide resources to these often overlooked and underserved communities.” She adds that Incyte did not hide its partnership with General Hospital. It even issued a press release. ABC, General Hospital‘s network, did not reply to a request for comment.
Prasad says General Hospital left out crucial context. In fact, in a recent letter to the Journal of the American Medical Association, he and Sham Mailonkody (an oncologist at Memorial Sloan Kettering in New York) argue that Incyte and General Hospital were doing marketing in disguise. For instance, the show’s dialogue did not emphasize the subtleties doctors look for in diagnosing PV. Viewers might identify with symptoms Devane exhibited, and seek testing from a doctor. So what—If most PV patients carry the JAK2 mutation, shouldn’t their diagnosis be a slam dunk? Not so fast. JAK2 is common in many people without PV. Not everyone needs to start popping aspirin and draining blood.
But most people with PV probably should be doing those things. And that’s where the General Hospital subplot is most insidious. Prasad says Devane’s complains that those treatments only attack the symptoms might prime any viewers who receive a positive PV diagnosis to make the same complaint to their doctors. Then they might hear about ruxolitinib—a treatment that targets the proteins the JAK2 mutation expresses— not the symptoms that come from having too much red blood.
Ruxolitinib isn’t a cure, though, because scientists still haven’t figured out if JAK2 causes PV. All they know for sure is that most people with the disease have the same mutation. “We don’t know when these mutations are passengers, drivers, when they should be targeted, and when they shouldn’t be,” says Prasad. That makes ruxolitinib a gamble—an expensive one. The drug can cost upward of $1,000 a month.
The logical counterpoint to all of this anti-pharma hysteria is that General Hospital and Incyte are guilty of nothing more than disseminating information. “I would say you want to have the right information,” says Robert Klitzman, a bioethicist and psychiatrist at Columbia University. He said the soap opera could laid out exactly how the symptoms led to the diagnosis, and then mention the company’s drug as an option alongside other treatments—not create an unspecified need by making the other options seem unattractive. “If the patient says ‘I don’t like getting blood draws,’ then the doctor can say, ‘Well there is this other drug, but it’s not clear that it will help, it’s not recommended unless you these other, cheaper, drugs, are not effective, and it’s going to have side effects,” he says. And, as always, dramatic music is a nice touch.