By Arthur Allen
The CVS representative popped into Lisa Trumble’s third-floor Berkshire Medical Center hospital room in Pittsfield, Massachusetts, to announce that everything was arranged for Trumble to return home, where she relies on IV nutrition due to severe intestinal problems that leave her unable to eat.
That was on Tuesday, Oct. 8. The next morning, a social worker and a doctor woke Trumble to say her discharge was canceled; CVS would no longer provide her home nutrition, and she had to stay in the hospital.
“I was dropped between Tuesday night and Wednesday morning with no care for my life or my health,” Trumble said from her hospital bed eight days later.
After this article was published, on Friday, Oct. 18, Trumble said she was being discharged due to her caregivers finding a replacement service.
“I’m just afraid their supplies will run out,” she said. “My backup plan is always to go back to the hospital.”
Trumble is among the 25,000 U.S. patients whose survival depends on parenteral nutrition (PN), which uses IV bags containing life-sustaining amino acids, sugars, fats, vitamins and electrolytes. Hurricane Helene wrecked a PN distribution factory—Baxter International in North Cove, North Carolina—that produced 60% of the fluids from which their sustenance is mixed. About two weeks later, CVS announced that its Coram division, an infusion pharmacy, was exiting the PN and IV antibiotics business.
The hurricane led Baxter International to ration its dwindling supplies. Pharmacies that supply Trumble—and other patients like her—were already plagued by shortages. This rationing means the remaining infusion pharmacies can’t take on the customers cut off by CVS, said David Seres, director of medical nutrition at Columbia University Medical Center in New York.
At the Mayo Clinic in Rochester, Minnesota, seven or eight patients were ready to go home Tuesday, Oct. 8, but couldn’t be discharged because no infusion company would accept them, said Manpreet Mundi, a Mayo Clinic endocrinologist. The patients would fall ill within a day or two without this nutrition, he said.
By Friday, Oct. 18, home supplies had been located for all but a few of them, Mundi said. “A lot of public pressure” on Coram was starting to take its toll, he said.
Although the Food and Drug Administration (FDA) is allowing emergency imports of IV fluids that were depleted by Hurricane Helene, as well as production of some of the fluids by U.S. compounding pharmacies, it’s unclear how long it will take to replenish supplies, Mundi said. He is a board member of the American Society for Parenteral and Enteral Nutrition and medical adviser to the Oley Foundation, which advocates for PN patients.
“We’re trying to raise awareness that this could get worse before it gets better,” Mundi said.
The patients who rely on PN have a variety of conditions that render them unable to digest food. Some have congenital abnormalities or disorders like Crohn’s disease that led to the surgical removal of bowel sections. Others were scarred by cancer, car accidents or gunfire, or are preemies born with underdeveloped intestines. In most patients, the fluid is pumped through a catheter into a large vein near the heart.
A crisis hit the PN community two years ago when CVS Health announced that it was shutting down half of its 71 Coram pharmacies.
CVS, which recently announced nearly 3,000 layoffs amid reports of a possible restructuring, began telling its remaining 800 to 1,000 PN customers that they would have to find other infusion pharmacies on Tuesday, Oct. 8. A news release provided to KFF Health News suggested the phaseout would last into January, but for patients like Trumble, the impact was immediate.
The CVS release said that highly specialized infusion medicine is a challenging environment for all companies, and Coram has not been immune to these challenges. As a result, CVS said it has reevaluated its service offerings.
When asked about Trumble’s case, CVS Health spokesperson Mike DeAngelis said the company would “try to resolve it.” The next day, a company called Optum stepped in to replace Coram, Trumble said.
It’s difficult enough normally for such patients to find new suppliers for their materials, which can include 120 pounds of IV fluid per week.
Coram’s departure “made a big crisis that much worse,” Mundi said. “It’s become kind of a double whammy.”
The Baxter International North Cove plant produced most of the country’s high-concentration dextrose, a major source of energy for PN patients, as well as saline solution and sterile water, which are vital supplies for PN patients. A week after Hurricane Helene hit, Hurricane Milton threatened sterile IV fluid supplier B. Braun Medical’s facility in Daytona Beach, Florida. The federal government helped move 60 loads of the company’s inventory to a safe location, but the plant was spared of the storm’s worst damages. The facility restarted production on Friday, Oct. 11.
The lack of damage was a relief for Beth Gore, CEO of the Oley Foundation. She, along with her husband and their six adopted children, braved the storm’s seven hours of lashing wind in their home near Ruskin, Florida. Gore said Hurricane Milton wrecked a nearby car and part of their roof, but the family prayed through it all and somehow never lost power, though their neighbors did. Having power in their home kept the IV fluids fresh and the internet on, which calmed their children.
Coram has supplied Gore’s youngest son, 15-year-old Manny, with PN for 13 years. Now, the family will need to find another supplier, she said. Gore said there’s been no relief since Coram reduced its services in 2022.
“Now, there’s this new twist,” said Gore.
Her son gets care through Medicaid, whose reimbursement provides barely break-even margins for many infusion pharmacies, Gore said. Insurance limits, state licensing differences and highly specific nutritional needs pose challenges for patients seeking new IV suppliers in the best of times, she said.
On Wednesday, Oct. 9, the FDA announced it would allow Baxter International to import emergency supplies from Canada, China, Ireland and the U.K. In the meantime, Baxter is prioritizing caring for hospital patients over home infusion companies, which lack backup supplies, Mundi said.
“We’re all on the phone 24/7,” said Kathleen Gura, president-elect of the American Society for Parenteral and Enteral Nutrition and pharmacy clinical research program manager at Boston Children’s Hospital.
Her team is struggling to find new suppliers of IV nutrition at home for the 20 Coram patients among the 150 patients she cares for.
“Some kids have a situation where they can’t absorb at all through their intestines and will die of dehydration if they can’t get IV,” Gura said.
The IV fluids Baxter lost from Hurricane Helene’s damages are vital to all kinds of inpatient care. Many U.S. hospitals are conserving fluid by giving some patients oral hydration instead of IVs, or by delaying surgeries, said Soumi Saha, senior vice president of government affairs at Premier, which negotiates group hospital purchases.
President Joe Biden has invoked the Defense Production Act, which will enable the government to order companies to prioritize the rebuilding of Baxter’s North Cove plant.
The military is flying in supplies from Baxter plants overseas, Saha said. Additionally, Premier has asked the FDA to put additional PN ingredients on its shortage list, which would allow large compounding facilities to produce the materials.
Ellie Rogers, 17, of Simpsonville, South Carolina, fears the worst will happen if she’s unable to get her supplies. She suffers from a host of immunological and neurological ailments that require her to get four liters of IV fluid daily to stay alive, she said.
Her supplier, an Option Care Health pharmacy in South Carolina, informed the family on Monday, Oct. 14, that it was sending her enough bags for a day or two, rather than her weekly supply.
“They really don’t know when they’re going to get what they need,” Rogers said.
In the past, a reduction in infusions has led to dizziness, nausea and pooling of blood that “felt like my veins were going to explode,” Rogers said.
On Monday, Oct. 7, Crohn’s disease patient Hannah Hale’s infusion pharmacy called to say it couldn’t fill her standing weekly order of IV bags and urged her to find a new pharmacy.
“I called 14 infusion pharmacies and haven’t been able to find anyone to take me,” said Hale.
She suffers from weight loss and low blood sugar; rationing her supplies raises dangers of seizures or coma, Hale said.
Trumble, who started on PN 13 months ago due to colon cancer and severe intestinal issues, said she was grateful to the hospital and gets excellent care there, but misses her mother, son and 8-year-old grandson, Jordan—and her cats—during her 17-day hospitalization.
What’s worse, Trumble said, is that her mother and son, who get Medicaid payments to care for her, weren’t paid while she was away. But without IV nutrition at home, she said she’d starve.
