Cancer drug shortages deliver ‘gut punch’ to patients unsure if their survival odds will be undercut

Mairéad McInerney will never know if changes in her treatment plan have undercut her odds of surviving stage 3 triple-negative breast cancer. Critical shortages in cancer drugs have forced her to change course not once, but twice.

The first time, her physicians flipped the order of her drug regimen because Taxol (paclitaxel), one of two drugs she was supposed to take, was not available, said McInerney, who was diagnosed in December 2022. Instead, McInerney started the other two chemotherapy drugs (Adriamycin and Cytoxan) in the regimen first, which differed from the standard treatment approach, she said.

The second time, after McInerney completed the Adriamycin-Cytoxan infusions, she was supposed to start 12 weeks of Taxol combined with another chemotherapy, called carboplatin. Taxol was back in stock at Penn Medicine’s Abramson Cancer Center in Philadelphia, where McInerney is being treated. But the carboplatin was only available for the first 10 weeks of the 12-week protocol.

For McInerney, who has one of the more aggressive forms of breast cancer, the changes felt like one emotional blow after another.

“You navigate so much and do all these mental gymnastics to wrap your head around enduring and getting through your infusions and your treatments,” said McInerney, a 38-year-old health care executive who lives in suburban Philadelphia. “And then to hear that something is not available, it really is such a gut punch again, because you’re still out of control.”

Cancer physician groups have become increasingly vocal in recent weeks about national shortages in key medications, including longtime generic drugs like carboplatin and cisplatin. Those drugs comprise the backbone of potentially curative treatment for breast, lung, prostate, and gynecologic cancers, as well as many types of leukemia and lymphoma, according to the National Comprehensive Cancer Network, a nonprofit alliance of academic cancer centers.

Nearly all cancer centers — 93% — have reported a shortage of carboplatin, and 70% have similar supply problems with cisplatin, according to a late May survey conducted by the National Comprehensive Cancer Network. Medical groups have issued guidance on how to ration the existing supply. For instance, the Society of Gynecologic Oncology has released a series of statements, including one on May 24 which recommended that platinum drugs be “prioritized for curative intent or in settings where prolonged clinical benefit is anticipated.”

For the patients and physicians involved, the shortages mean they must make difficult decisions amid the already omnipresent stress of a cancer diagnosis. McInerney recalled asking her physician if there was a good substitute for the two missing carboplatin doses; she was told there wasn’t. In other situations, cancer physicians say, a patient might get an alternative drug, but one that’s not the go-to drug that’s standardly recommended, or one that might have more side effects. Or patients might have to travel farther to get the drugs that they need.

“All of us are at our wit’s end,” said Brian Orr, a gynecologic oncologist who practices at Hollings Cancer Center at Medical University of South Carolina in Charleston.

Carboplatin and cisplatin, called platinum drugs, offer the best chance of curing patients with cervical, ovarian, uterine, and other gynecologic cancers, according to Orr. “Outside of a few select [treatment] advances, platinum has been the most impactful addition to our cancer care that impacts survival,” Orr said. “And so, it’s essential.”

Shortly before the Society of Gynecologic Oncology issued its guidance, physicians treating gynecologic cancers at Hollings Cancer Center began to ration platinum drugs, Orr said. As of late June, the dose for each carboplatin infusion had been reduced slightly, he said, with patients still getting the recommended total number of treatments.

“We’re looking at an order of maybe just a handful of weeks left before we may run out,” Orr said, regarding carboplatin availability. Meanwhile, an influx of new patients has been traveling an hour and a half away from Beaufort, S.C., to Hollings Cancer Center to get their chemotherapy, as practices in that community have run out of either carboplatin or cisplatin, he said.

In recent weeks, California oncologist Ravi Rao estimates that only one-third of his patients could get cisplatin or carboplatin on any given day when they came in for their scheduled chemotherapy. “If we run out today and someone comes in tomorrow for treatment, if we don’t have the drug, we just don’t give it,” said Rao, part of a large practice in Fresno, and a board member at Community Oncology Alliance, a nonprofit organization representing community oncologists.

In some cases, such as for a protocol used with breast cancer patients, Rao has changed the order of infusion drugs, starting the portion that includes a platinum drug later in the sequence, with the hope that it will be available by then. With other patients, such as those with lung cancer, there are good alternatives if platinum drugs aren’t in stock, he said.

But sometimes, there aren’t any good alternative approaches, said Rao, describing a recent decision involving a 79-year-old man with stage 2 bladder cancer. The man, who has been undergoing radiation, also was supposed to get carboplatin along with Taxol. But carboplatin, considered the more effective of the two drugs, wasn’t available for the first three of the six recommended cycles of chemotherapy.

For the fourth cycle, Rao prescribed mitomycin, a drug that’s given for bladder cancer but typically avoided in older patients because it’s a “tough drug,” he said, with a higher likelihood of severe side effects, including vomiting and diarrhea. If the drug treatment doesn’t work, he said, the next step is likely to remove the man’s bladder.

“I told him, ‘I’ve never given it to someone at age 79. But I’m going to give you some,’” Rao said. “I cut down the dose, and I’m really keeping fingers crossed. I would hate for him to go through the entire treatment and not even get one dose of an effective chemotherapy.”

Cancer physicians may have to make these kinds of drug changes on short notice, with little advance information about when a drug won’t be available and when it will be restocked, said Andrew Shuman, a cancer surgeon and medical ethicist at the University of Michigan.

“The vast majority of cancer treatments is based on high-quality evidence from clinical trials,” said Shuman, who testified about drug shortages before a congressional committee in March. “And drug shortages put us in a position where we have to make decisions that are not informed by the evidence, because we simply are doing the best we can, which is an incredibly uncomfortable position for cancer doctors to be in.”

Meanwhile, patients like Molly Young read the headlines, count pills, and try not to fret. In late June, Young had just six remaining doses of a targeted therapy called Tukysa (tucatinib), which she takes twice daily as part of a multi-drug regimen for stage 4 breast cancer. The drug hadn’t been available at her two prior appointments at Walter Reed National Military Medical Center in Bethesda, Md.

Ultimately, Young did get more pills before she ran out. Even so, the 36-year-old singer and voice/piano teacher said the uncertainty is sometimes too much to bear.

“You worry even when you do have all the meds,” she said. “Will they work? Am I suffering for a purpose? Is this going to actually save my life? So the extra worry of, ‘Do I even have these poisonous meds that are so hard to take, so hard to handle?’”

Living with cancer can already be psychologically challenging, with emotions ranging from anger and fear to a sense of being overwhelmed, as well as potentially anxiety or depression. In one 2018 study involving 3,724 adult patients, half reported high levels of psychological distress. That distress was linked to physical problems, including fatigue and sleep difficulties.

Rao is particularly concerned about patients with ovarian cancer, as research shows that platinum drugs boost the chance of cure. Nearly 20,000 women are diagnosed with ovarian cancer each year; roughly half of them will live for at least five more years. For patients with advanced cancer, Rao said, missing even one platinum dose “will have an impact on cure rate — there’s no doubt about it. It’s just that I can’t tell you how much.”

While cisplatin and carboplatin are similarly effective for ovarian cancer, Rao prefers to prescribe carboplatin as it’s less likely to induce nausea, fatigue, and other side effects. When Christina Castro-Garcia first met with Rao earlier this year after her diagnosis with stage 3 ovarian cancer, he assured her that side effects would be relatively mild under the prescribed regimen, carboplatin and Taxol.

She got both drugs during her first chemotherapy cycle, and mostly felt tired and a bit nauseous. But during the second cycle, only Taxol was available. For the following two cycles, carboplatin was out, so Castro-Garcia got cisplatin instead along with Taxol. She felt the impact of the heightened side effects immediately.

“This last time I was throwing up for probably one full day,” said the 44-year-old, describing her slow recovery last month from the most recent cycle. “Basically, three days I was throwing up. But one full day I couldn’t even keep water or anything down.”

Castro-Garcia credits her husband’s support and her religious faith with helping her cope with missing drugs on top of cancer. But, she added: “It literally feels like you’re walking in the dark not knowing what’s going to come, what you’re going to get that day.”

McInerney, who is clinically trained as a social worker, said that she’s witnessed the emotional strain of these shortages on her cancer care team, who she credits with working hard on patients’ behalf. If large institutions like the University of Pennsylvania struggle to get enough of these drugs, McInerney asked, what’s happening to cancer patients in more rural regions of the country?

When McInerney asked about the impact of the two missing carboplatin doses, her cancer team said they believed that she had received sufficient chemotherapy.

“But I’m still angry,” she said. “I will say that if I get a reoccurrence down the road, this will be lingering in the back of my head. Is it because I started the way I did, because Taxol wasn’t available? Is it because I didn’t get the final full protocol of those two treatments?”