To hear NPR’s piece last week about the FDA’s then-imminent approval of a new drug to treat hepatitis C–sofosbuvir, approved Dec. 6–you might think there was another miracle cure in the making. (There may be, but it’s far too soon to say for sure.) Your reaction to last week’s news is likely more measured, however, if you remember, say, how the press blew it on the story of Vioxx, a pain reliever once hailed as a “super aspirin,” that caused heart attacks, some fatal, in thousands of patients before drug maker Merck pulled the drug from the market. Careful reporting is in order for any new drug, including sofosbuvir, which is used in combination with other drugs to treat liver disease.
Morning Edition host Renee Montagne started last week’s NPR segment noting that “health officials are urging everyone born between 1945 and 1965 to get tested for hepatitis C. That’s around 79 million people.” In other words, this is a huge potential market with big bucks at stake. As these kinds of stories go, there was the usual anecdote from a man who had the disease and underwent conventional treatments, which come with oodles of side effects. He exclaimed, “[Sofosbuvir] was like a miracle pill. It was just like taking an aspirin. I had no side effects at all.” Then came similar and predictable testimonials from liver experts. Dr. Eric Lawitz, of the Texas Liver Institute, who ran a clinical trial, told listeners: “There’s not going to be that many reasons not to treat patients. If you have a set of safe, simple, short duration pills that cure hepatitis C, who’s not going to want treatment?” From Johns Hopkins hepatitis expert David Thomas came this assessment: “This is about as hot as I’ve ever seen. I’ve never seen anything like it.”
NPR medical correspondent Richard Knox did give a very brief nod at the end of the segment to the cost of the drug, which he said was $90,000 for a course of treatment. But then he reported that Thomas, of Johns Hopkins, said society should consider the cost of not treating the expanding population that’s at risk for cirrhosis and liver cancer, raising the specter of even greater costs. Knox didn’t say who should bear the $90,000 cost of treatment. Medicare? Medicaid? Commercial insurers? Patients whose coverage increasingly comes with high amounts of cost-sharing?
NPR’s piece omitted other pieces of crucial information that should be included in reporting on new drugs. Did Lawitz and Thomas have ties to the drug industry? Many experts quoted in the media do. And were the clinical trials solid, or was there other evidence indicating caution? The idea that every Baby Boomer should be tested (per the CDC) because the prevalence of the disease in this group is high needed more explanation. (CNN’s Dec. 6 report offered some detail on specific risk factors.) Should someone with no risk factors–no needle exchanges, no blood transfusions–be tested, and what’s the cost to find they don’t have the disease and may never have it?
Similar flaws marked other media coverage of the new drug, although there were bits and pieces of fuller reporting. In a Dec. 6 piece, USA Today quoted Douglas Dieterich, a liver specialist at Mt. Sinai Hospital in New York, touting the drug as “part of a revolution in treatment.” The paper also identified Dieterich as a consultant to Gilead Sciences, the maker of the drug (which goes by the brand name Sovaldi) and noted that David Thomas–quoted in the piece, as well as by NPR–had no current ties to drug companies.
But the big news was generally given short shrift: Sofosbuvir is very expensive medicine. News outlets glossed over the drug’s high cost, which drugmaker Gilead says in a press release is $84,000 for a three-month course of treatment for the most common form of the disease. That works out to $1,000 per pill. The Wall Street Journal did say Gilead president John Milligan doesn’t expect insurers will stymie the use of the drug, although some health plans may ask doctors to justify their prescriptions in writing. On Dec. 7, New York Times reporter Andrew Pollack raised the price question by quoting Michael Weinstein, president of the AIDS Healthcare Foundation (which doesn’t see eye-to-eye with Gilead on the prices of drugs). Weinstein told Pollack the cost of the hepatitis drug was “unbearable to the health care system and it is completely unjustified.” Gilead defended the price, Pollack reported, calling it “fair given the drug’s higher cure rate and that the total cost of the 12-week regimen was ‘consistent with and in some cases lower than’ the cost of some other regimens for hepatitis C.” On Monday, Pollack’s Times colleague–medical correspondent Elisabeth Rosenthal–tweeted: “Sheesh, New oral treatment 4 Hep C= $100,000; $1000/pill! FDA says ‘safe and effective.’ No one weighs in on price.” (Rosenthal had her own excellent piece last week questioning the high price of hospital care, part of an ongoing series called, “Paying Till It Hurts.”)
In a lengthy piece published back in early November, the Times‘ Pollack gave a more complete picture of the new drug, including the fact that “many of the new drug combinations have not been extensively tested yet. Side effects might still show up.” He reported its high price could be a barrier for the uninsured and those in developing countries, and noted critics worry that the bill will be run up when huge numbers of people who have done fine without the drugs turn to them, despite never suffering serious liver problems. “For patients who can afford them, the temptation to take the new drugs before trouble arises will be powerful,” Pollack reported.
While many outlets fell short in their initial coverage sofosbuvir–short on skepticism and questions asked–there are opportunities to do better by news consumers. The story of the new hepatitis C drug opens the door for a renewed examination of the high cost of medicines and their contributions to the high cost of medical care in the US, topics that have been buried of late in the avalanche of coverage of Obamacare screw-ups. In a fine story published in late October by New York magazine on the high cost of cancer drugs, Peter Bach, director of the Center for Health Policy and Outcomes at Memorial Sloan-Kettering, told reporter Stephen Hall, “What predicts the price of the next cancer drug is the price of the last cancer drug. The only check on the system is corporate chutzpah.” A challenge, of sorts, for reporters to dig deeper into drug pricing.
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Trudy Lieberman is a longtime contributing editor to the Columbia Journalism Review. She is the lead writer for CJR's Covering the Health Care Fight. She also blogs for Health News Review and the Center for Health Journalism. Follow her on Twitter @Trudy_Lieberman.