TACOMA — As she received chemotherapy in a MultiCare infusion room, Norma Lind told of how she was given likely a year or less to live when diagnosed with advanced pancreatic cancer. Thanks to a high-dose drug regimen, she's made it two years so far — "a miracle," declared an oncologist sitting by her side.
But a month ago, a national shortage of chemotherapy drugs led MultiCare to cut the amount Lind receives of a key medication, fluorouracil, by roughly 20%.
Dr. Blair Irwin, medical director of a MultiCare cancer center that operates five sites around Puget Sound, told the 64-year-old patient she hoped the altered regimen would still prove effective.
"I hope so too," said Lind, receiving treatment while wrapped in a blanket imprinted with her grandchildren's names. She's improved to a point where she needs chemotherapy monthly, after a grueling every-other-week regime that made her hair fall out and her energy disappear. She fears having to do it again, should the cancer come roaring back.
Drug shortages of all types, caused by an array of issues that include low manufacturer profits on generic medications, have been a chronic problem for years. But the scarcity of lifesaving cancer drugs presents a new urgency for health care systems throughout Washington.
Providers, pharmacists and administrators are meeting as often as twice a day, redoubling efforts to source medications and making agonizing decisions about how to ration drugs — either immediately or if their supplies dwindle further, depending on the institution.
One rural hospital has it even worse. On May 25, Port Townsend-based Jefferson Healthcare had only one day's supply left of carboplatin and cisplatin, chemotherapy drugs that form the backbone of treatment for a wide variety of cancers.
"It's pretty bleak," Dunia Faulx, Jefferson's chief planning and advocacy officer, said then, noting the health system runs the only hospital in a wide swath of the Olympic Peninsula and serves between 10 and 15 chemotherapy patients at a time.
Jefferson officials managed a last-minute trade with another hospital to get an additional supply of cisplatin — and transferred a couple of patients receiving carboplatin elsewhere — but the health system's supply of each is still perilously low.
Big and small health systems are affected.
The Swedish Cancer Institute, which treated roughly 29,000 patients last year and is part of the multistate Providence system, said in a statement it has "diminishing reserves on hand" and is "making the difficult decisions to conserve and prioritize supply, re-evaluate treatment plans for some patients, and identify alternative therapeutics when possible."
Swedish's Dr. Fernanda Musa, who sits on the board of the national Society of Gynecologic Oncology, said she's been telling chemotherapy patients: "This week we have supplies. Next week we have supplies. ... And then we don't know."
Some institutions are reluctant to talk about the problem, which comes as the medical field is still trying to recover from the stresses of the COVID-19 pandemic.
Fred Hutchinson Cancer Center, declining an interview, said in a statement it "is currently not experiencing major impacts" but is "proactively preparing to ensure ongoing treatment for our patients."
Other hospitals and providers, eager to galvanize government officials to find solutions, are remarkably open.
Dr. Sarah Leary, head of Seattle Children's brain tumor and clinical research programs, said in late May the hospital's "scrambling, begging and borrowing" ensured no child had yet missed a dose. But she and other Seattle Children's officials recently sat down with a spreadsheet to see who might be able to make do with less medication.
"There was no easy answer on that list where we felt like, 'This is a great kid to miss their medicine, it won't matter.' It matters for every patient," Leary said. "And we're trying to measure how much it matters: Is it going to be life-threatening, or is it just going to make a risk that they need more treatment in the future?
"It puts us in one of the bigger moral dilemmas of our careers."
"Making our best guess"
As at other institutions, MultiCare, which operates 12 hospitals mostly in South King and Pierce counties, has looked for ways to conserve medications in short supply without compromising care.
"In every case we're trying to follow evidence-based guidelines," said Irwin, who in addition to her supervisory role at MultiCare sits on the board of the Washington State Medical Oncology Society.
That could mean lowering doses to an amount still considered beneficial, or within what's known as a "therapeutic window." It could also mean spacing out doses to a greater degree — say, every four weeks rather than three. Sometimes, too, alternative drugs seem like a reasonable option.
Still, Irwin said, "we are sometimes making our best guess without a lot of evidence to support it."
"It's heart-wrenching," she added.
Lind's case illustrates some of the factors at work.
Her highly effective treatment included a "bolus" — a high-dose blast of a drug (in this case fluorouracil) given in the hospital, supplementing a continuous infusion administered through a take-home pump.
"There are some places in the country that don't ever do the bolus," Irwin said. "It's very possible we'll eliminate the bolus and still get the same efficacy."
The first way doctors know if a patient is doing OK is based on their clinical symptoms. "She looks like she's doing pretty well," Irwin said of Lind. "Usually someone who has progressive pancreatic cancer has nausea, vomiting, [and is] not able to sit and talk to us like that."
But the real test will come when Lind receives a CT scan, which will show if there are any new or enlarged tumors.
Despite the success of Lind's treatment so far, her doctors don't expect a cure given the aggressive form of her cancer, which spread to her liver and other parts of her body.
That puts Lind in a group of patients not considered the highest priority for scarce drugs.
MultiCare's decision to prioritize curable patients — a guideline other local health systems have also made or are considering — reflects a difficult calculus.
"It's a road I'd rather not to have had to go down, honestly," Irwin said of reducing Lind's medication. "I'd rather keep an eye on what's working."
At the same time, Irwin said, fluorouracil, also known as 5FU, can be used to cure rectal and colon cancers, among others. "So we're faced with: Do we cure a few more patients because we've eliminated the bolus [for Lind] and give that drug to those patients?"
Another complication: The notion of "curing" patients can be slippery. Musa, of Swedish and the gynecologic oncology society, noted that in her field, "our treatments are so good that the patients sometimes live with stage three [or] four disease for decades."
Even without that rosy a prognosis, sometimes uncurable patients can be kept alive months or years longer with the best drugs, as opposed to their alternatives, said Dr. Michaela Tsai, director of Swedish's breast oncology program. A substitute drug is "better than nothing," she added, but "it's not acceptable."
Tsai and Musa said they haven't yet had to alter drug regimes for their patients, with the exception, in Musa's case, of giving doses that have slightly less carboplatin than she might otherwise use but are still considered biologically equivalent, she said.
Swedish currently has enough supplies so that curable patients or those who can't receive alternative drugs without compromising their long-term outcomes are continuing to get scarce medications, added Tsai. But those who have "a perfectly acceptable alternative are being offered that."
Tsai said some patients react well when told they must forgo a first-choice drug because of the shortages. "I get it," they might say. "I can't be cured. Give it to someone who can." But she added, "not everyone is that understanding."
Pharmacists comprise the "front line" of the hunt for scarce medications, said Dr. Joseph Rosales, executive medical director of cancer medicine for Virginia Mason Franciscan Health, which operates nine hospitals across Western Washington.
The health system hasn't yet had to cut back its use of any medications because its pharmacists have been making daily calls to suppliers, instead of weekly or twice-a-week requests. "It means a lot more manual labor," Rosales said.
At UW Medical Center, pharmacists work with providers to have multiple chemotherapy patients arrive in short succession. A vial of medication contains more than one dose, so preparing doses for groups of patients ensures not one drop is wasted, said Deborah Frieze, the hospital's pharmacy manager.
For the same reason, Seattle Children's no longer prepares many chemotherapy doses ahead of time. A child could come in with a cold, making that day's chemotherapy impossible. A dose prepared in advance would have to be thrown out.
Getting doses ready on the spot adds "probably one to two hours into the patient's visit," said Tara Wright, pharmacy supervisor for Seattle Children's cancer blood disorders center.
Making planning all the more challenging, Wright added, is that the hospital's supplies of carboplatin and methotrexate — a drug used commonly for children's cancer, known to double the survival rate in some cases — has been "wildly unpredictable, where sometimes we get a decent amount of vials and sometimes we can't get anything at all."
How long these workarounds and mad scrambling will continue is anybody's guess.
Rosales, of Virginia Mason Franciscan Health, said he's confident the problems will be fixed. "They're not things that will bring the system to a halt," he said.
Rosales said earlier drug shortages stemmed from short-term problems, like regulatory holdups at a factory, or trouble finding workers or raw materials. But he also noted systemic problems, like companies' disinclination to make generic drugs with low profit margins, are not so easily solved.
U.S. Rep. Derek Kilmer, a Gig Harbor Democrat who co-chairs the House cancer caucus, drafted a letter with another member of Congress pressing the U.S. Food and Drug Administration about its role in monitoring and mitigating drug shortages. And the Biden administration has put together a team to look into solutions.
The Northwest Healthcare Response Network, a nonprofit that works with Washington officials and organizations to address health emergencies, also wants to help, according to Faulx of Jefferson Healthcare.
Faulx, who last week participated in a call with network and other health care leaders, said she's hoping the effort will help bring about equitable and consistent statewide rationing and distribution systems. As she sees it, a patient in tiny Quilcene, on the Olympic Peninsula, should have the same shot at the best chemotherapy as a patient in Seattle's Queen Anne neighborhood.
