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The shortage of cancer drugs is not going away, but it may be easing slightly, a new national survey suggests. Based on questions posed to 29 of its 33 member hospitals, the National Comprehensive Cancer Network said Thursday that 86% of those cancer centers are experiencing a shortage of at least one type of generic chemotherapy drug, down from 90% in May.

Both surveys focused mostly on two platinum drugs, carboplatin and cisplatin, that are prescribed to treat multiple cancer types, including lung, breast, prostate, and gynecologic cancers, as well as many leukemias and lymphomas. They’re important therapies for children’s cancers, too, where there tend to be fewer alternative medications. Lacking access to those two drugs is particularly worrisome because in past shortfalls, one could be substituted for the other without significantly affecting treatment. Last month 72% of the centers said they were experiencing a shortage of carboplatin (down from 93%) and 59% are still seeing a shortage of cisplatin (down from 70%).

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Shortages have been acute and widespread this year, but doctors told STAT they’re nothing new. The economics of drug development make generic drugs less attractive than brand-name versions, forcing doctors to find an alternative, and not just in cancer.

“There are clearly hundreds of drug shortages if you look across medicine overall in the U.S.,” oncologist Robert Carlson, NCCN’s chief executive officer, said in an interview. “Patented drugs are very expensive and because of that, the pharmaceutical industry is incented to produce those medications. … It’s further complicated by a drug distribution system in the U.S. for generic drugs that’s just totally dysfunctional.”

Related: Cancer drug shortages widen disparities between big systems and small

The remedy? “I think it’s going to take federal action, pretty impressive, dramatic federal action,” Carlson said. “It’s going to require redoing some of the legislation about the pharmaceutical supply chain.”

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Nearly all the centers responding to the NCCN survey, all located in academic medical centers, said they remained able to give carboplatin or cisplatin to every patient who needed it, fighting diminished supply with strict waste management strategies and close cooperation with hospital pharmacists.

Carlson sees warning signs about other drugs, too. The drug 5FU, commonly used to treat colorectal cancer, was in shortage at 26% of the cancer centers in May but 55% in September. For fludarabine, used in leukemia, the shortage grew from 11% to 45% four months later. For paclitaxel, prescribed for ovarian cancer, esophageal cancer, breast cancer, lung cancer, Kaposi’s sarcoma, cervical cancer, and pancreatic cancer, the deficit rose from 4% to 10%. “There are some signals here that we may be in for an even bigger problem than just this profound shortage in cisplatin and carboplatin,” Carlson said.

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Anonymous comments from survey respondents show how it’s going on the front lines:

• “We have sufficient supply to treat patients, however, we never know if our back orders are going to be filled. It’s still living paycheck to paycheck.”
• “We still are getting intermittent shipments. Supply is better but not back to normal.”
• “We access our stock constantly and have barely been getting by week by week.”
• “Like carboplatin, we get supplies [of cisplatin] in weekly that barely cover our usage. But so far, we have not restricted usage beyond our current regular guidelines.”

While most patients receiving care at large cancer centers can get the drugs that they need, Carlson is hearing that’s not the case at smaller centers or in community settings. “The system is very fragile.”

Related: From drug shortages to high prices, U.S. system’s shortcomings have deep roots

For pediatric cancers, the shortage of chemotherapy drugs hits even harder because newer treatments, such as immunotherapy, are not approved for children, Asher Marks, director of pediatric neuro-oncology at Yale Cancer Center, said in an interview. Carboplatin and cisplatin form the backbone of children’s treatment plans, so now that shortages seem to occur more frequently, pediatric oncologists have to fall back more often on methods they’ve used over the years.

“It’s very concerning for a large number of our patients. I take care of patients with brain tumors where these drugs are important, but it’s multiple other cancers as well, especially solid tumors,” he said. “Sometimes we have to look for completely different chemotherapy regimens that maybe were studied outside the U.S. that have similar efficacy and change things up. But it’s absolutely not ideal.”

The drug shortage extends beyond chemotherapy to what Marks called supportive drugs, ones like dexamethasone and other steroids that calm inflammation and ease nausea. “Right now the focus is on chemotherapies, but it’s not always exclusively chemotherapies.”

Explaining this to families isn’t new but it still can be difficult.

“We’re kind of used to these situations. It doesn’t make it any better. But we do what we can with the tools that we have,” Marks said. “It’s hard telling patients, ‘This is the drug we would use but we don’t have access so we’re going to do this different one.’ It doesn’t give them a lot of confidence. It gives them pause. And it can be a very, very difficult conversation.”