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Many patients fighting cancer are facing another agonizing problem. Some key drugs that are used to treat the disease are in short supply, and there's no immediate fix. NPR's Yuki Noguchi explains how a broken market for generic drugs means shortages like this are affecting more people.
YUKI NOGUCHI, BYLINE: When I reached Toni Dezomits at her home outside Raleigh, she first tells me not to pity her for having advanced ovarian cancer.
TONI DEZOMITS: But you know what? I'm probably the toughest person you're ever going to meet.
NOGUCHI: She's faced death and the fear of it. She fought in the Gulf War. She then climbed police ranks, becoming chief before retiring. At 55, she still feels mentally tough and physically prime despite her Stage 4 diagnosis.
DEZOMITS: When we're done talking, I'm going to go on a 10-mile bike ride. The other day I did 20 miles, so I'm gearing up for next week. I try to gear up all the way until the day I have chemotherapy. And so I don't ever sit around and go, well, how long do people live with this cancer? I know what the statistics say.
NOGUCHI: But even Dezomits felt scared in early April. A medicine called carboplatin, which had almost eliminated tumors in her previous rounds of treatment, was in very short supply - not just carboplatin but also a similar drug called cisplatin. Both are core to treating many different cancers. The Food and Drug Administration recently said it would allow import of unapproved cisplatin from China. Still, experts say it may be year's end before shortages might begin to ease. All that has put Dezomits in a tough spot.
DEZOMITS: So here I am, faced with two suboptimal treatment plans.
NOGUCHI: One choice - substitute a drug with more severe side effects like nausea and nerve pain; the other - continue treatment without it. She opted to go without but won't know the health implications of that choice for weeks at her next scan. The story of how these two critical medicines, plus more than a dozen other cancer drugs, ended up in shortage boils down to a faulty system of generic drug-making overall. That's something professor Kevin Schulman researches at Stanford.
KEVIN SCHULMAN: We have a market that's really just totally focused on price.
NOGUCHI: Americans rely on generic drugs for over 90% of their prescriptions. But Schulman says it's hard for drug-makers to make a profit on medicines once their patents run out. Manufacturers are under constant pressure to make generic product at the lowest cost possible, even at a loss. That's led to factory shutdowns. Those that remain are driven to cut dangerous corners. Take Intas, the India-based company that made half the U.S.' key cancer drugs. FDA inspectors found evidence of major safety and quality violations last November. They shut it down, which abruptly cut supply. Shulman says it's a global problem. The pursuit of low-price generics has come at the expense of safety and ensuring steady supply. Currently, about 130 generic drugs are in shortage or unavailable, and that list keeps growing.
SCHULMAN: I mean, we save hundreds of billions of dollars a year using generic drugs rather than brand-name drugs, but we only save that money if the drugs are available.
NOGUCHI: And when crucial drugs are not available, Denver oncologist Jennifer Rubatt says the toll feels very heavy. Several weeks ago, her health system's pharmacist told her both key cancer drugs her patients rely on ran out. They recommended substitutes.
JENNIFER RUBATT: When I was faced with this drug substitution for a young woman with young kids, I did cry because it would - if her cancer comes back, I am always going to question if it was because I had to give her a substitute.
NOGUCHI: Drug shipments have since trickled in, but Rubatt worries they'll run out again and pores over research looking for alternatives least likely to compromise patients' care. Last month the Society for Gynecologic Oncology issued recommendations for doctors, advising them on managing use of limited drugs if supply runs lower. Patients with early-stage, high-risk disease should be top priority. It also recommends using minimum doses and stretching time between treatments to make it last. Amanda Fader is at Johns Hopkins and is president-elect of the society.
AMANDA FADER: There's hundreds of thousands of patients being impacted by this shortage, and even missing one or two cycles of treatment could impact patients' outcomes.
NOGUCHI: Fader says in the longer run, the business model itself must change to ensure good-quality supply.
FADER: Certainly, a reimagined model of delivery to hospital systems, whether directly from manufacturers or an improved intermediary model, I think, is critical.
NOGUCHI: Civica offers one such alternative. The nonprofit formed five years ago to address shortages of other drugs, especially injectable ones which are more complex to make. Civica purchases medicines directly from manufacturers to supply health systems that operate 1,500 hospitals. It conducts its own quality control and fixes drug prices high enough to ensure factories can stay in business. Allan Coukell heads public policy for Civica and says there are other benefits.
ALLAN COUKELL: It also lets us build up an inventory reserve. So we actually hold roughly six months of drug in a warehouse.
NOGUCHI: Coukell says Civica now supplies 80 essential drugs - things like antibiotics or anesthesia. It's evaluating whether and how to add cancer drugs to its list. But even if it does, it will take many months, maybe longer, before it could benefit patients like Toni Dezomits, the retired police chief. Yet she's worried more about others.
DEZOMITS: My oncologist is beside herself. I mean, they're struggling, too, because, you know, they've signed up to help people, and they're powerless.
NOGUCHI: She's joined support groups with hundreds of other cancer patients, many of whom lament how the drug shortage compounds their suffering. Some reach out to Dezomits for support from around the country. As she has throughout her life, Dezomits welcomes those calls as an opportunity to serve others.
DEZOMITS: Like, right now you're living, and that's what I say. I'm like, I'm living right now. Mentally, if you can keep yourself in a very positive mindset, it will carry you very far in a cancer journey.
NOGUCHI: Yuki Noguchi, NPR News.
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