A CVS representative appeared in Lisa Trumble’s third-floor hospital room at Berkshire Medical Center in Pittsfield, Massachusetts, to announce that everything had been arranged for Trumble to return home, where she was relying on IV nutrition due to severe intestinal problems that kept her from eating.
It happened on Tuesday, October 8th. The next morning a social worker and a doctor woke Trumble and told him his discharge was cancelled. CVS no longer provided nutrition at her home, and she had to stay in the hospital. A week later, “I’m still here,” he said by phone Wednesday. “I was dropped between Tuesday night and Wednesday morning with no concern for my life or health.”
Trumble isn’t the only one experiencing a crisis. He is among 25,000 US patients who rely on parenteral nutrition, or PN-IV bags containing life-sustaining amino acids, sugars, fats, vitamins and electrolytes. Hurricane Helene destroyed a factory in North Carolina that produces 60% of the liquid that makes up their food mix. About two weeks later, CVS announced that its Coram division, a leading infusion pharmacy, was exiting the PN and IV antibiotics business.
The storm caused Baxter International to ration its dwindling supplies. Pharmacies that supply Trumble and other patients like him are already hit by shortages, and the rationing means the remaining infusion pharmacies can’t accept 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 on Tuesday but couldn’t be discharged because no infusion company would accept them, said Manpreet Mundi, a Mayo endocrinologist. Patients would fall ill within a day or two without these nutrients, he said.
Although the FDA authorized emergency imports of IV fluids that had been phased out by Helene, as well as production of some fluids by American pharmacies, it is unclear how long it will take to restock those supplies, said Mundi, who is an FDA board member. American Society for Parenteral and Enteral Nutrition and medical advisor to the Oley Foundation, which advocates for PN patients. “We’re trying to raise awareness that this condition could get worse before it gets better,” he said.
Patients who depend on PN have a variety of conditions that make them unable to digest food. Some have congenital abnormalities or disorders such as Crohn’s disease that require surgical removal of part of the intestine. Others suffer from cancer, car accidents or gunshots, or are premature babies born with underdeveloped intestines. In most patients, fluid is pumped through a catheter into a large vein near the heart.
Crisis hit the community two years ago when CVS Health announced it was closing half of its 71 Coram pharmacies.
CVS, which recently announced nearly 3,000 layoffs amid reports of possible restructuring, on Oct. 8 began telling its remaining 800 to 1,000 PN customers that they should find another infusion pharmacy. A news release provided to KFF Health News indicates that the drug phase-out will last until January, but for patients like Trumble, the impact is immediate.
Highly specialized infusion medicine is a “challenging environment” for all companies “and Coram is not immune to these challenges,” the CVS release said. “Therefore, we have reevaluated our service offerings.”
Regarding Trumble, CVS Health spokesman Mike DeAngelis said, “We will investigate this matter and try to resolve it.”
It is usually quite difficult for such patients to find new suppliers for their materials, which can include 120 pounds of IV fluids per week.
Coram’s departure “makes a major crisis worse,” Mundi said. “It’s kind of a double whammy.”
Baxter International’s North Cove plant produces most of the country’s high-concentration dextrose, a primary energy source for PN patients, as well as saline and sterile water, which are also critical supplies. A week after Helene hit, Hurricane Milton threatened B. Braun Medical’s sterile IV fluid supply facility in Daytona Beach, Florida. The federal government helped transport 60 loads of the company’s inventory to a safe location, but the plant was spared the worst of the storm. It restarted production on October 11.
This comes as a huge relief to Beth Gore, CEO of the Oley Foundation. She, her husband, and their six adopted children braved a powerful windstorm for seven hours at their home near Ruskin, Florida. Milton damaged the car and part of the roof, but the family continued to pray and somehow the power never went out, even though their neighbors did, Gore said. This keeps the IV fluids fresh and the internet up, calming the children.
Coram had been supplying PN to his youngest son, 15-year-old Manny, for 13 years, and the family needed to find another supplier, he said.
“There has been no relief” since Coram reduced its services in 2022, Gore said. “Now there are new changes.”
Her son received care through Medicaid, whose reimbursement barely provides a break-even margin for many infusion pharmacies, she said. Insurance restrictions, licensing differences in states, and very specific nutritional needs pose challenges for patients looking for a new infusion supplier in the best of times, he said.
The FDA announced on October 9 that it would allow Baxter to import emergency supplies from Canada, China, Ireland and the United Kingdom. Meanwhile, Baxter is prioritizing hospital patients over home infusion companies – which lack spare supplies, Mundi said.
“We’re all on call 24/7,” said Kathleen Gura, president-elect of the American Society for Parenteral and Enteral Nutrition and manager of the pharmaceutical clinical research program at Boston Children’s Hospital. His team is struggling to find a new in-home IV nutrition supplier for Coram’s 20 of the 150 patients he sees.
“Some children have situations where they can’t absorb anything at all through their intestines and will die of dehydration if they don’t get an IV,” Gura said.
The IV fluids lost in the Baxter disaster are key to any type of inpatient care. Many U.S. hospitals are conserving fluids by giving some patients oral hydration instead of IVs, or by delaying operations, said Soumi Saha, senior vice president of government affairs at Premier, which negotiated the group’s hospital purchases.
President Joe Biden has invoked the Defense Production Act, allowing the administration to order the company to prioritize rebuilding the Baxter plant.
The military flies in supplies from Baxter factories overseas, Saha said. Premier has also asked the FDA to include several more PN ingredients on its shortage list, which would allow large compounding facilities to produce the ingredients.
Ellie Rogers, 17, of Simpsonville, South Carolina, feared the worst if she couldn’t get her supplies. He suffers from a number of immunological and neurological diseases that require him to receive four liters of IV fluids every day to stay alive, he said.
The supplier, an Option Care Health pharmacy in South Carolina, told the family on Oct. 14 that instead of providing a weekly supply, it was sending them enough bags for a day or two. “They really don’t know when they’re going to get what they need,” he said. Reducing infusions in the past has caused dizziness, nausea, and blood pooling that “felt like my veins were going to explode.”
On October 7, Crohn’s disease patient Hannah Hale’s infusion pharmacy called to say it couldn’t fulfill her weekly order of infusion bags, and urged her to find a new pharmacy.
“I called 14 infusion pharmacies and haven’t been able to find anyone willing to give me a shot,” said the 37-year-old Dallas man. He suffered from weight loss and low blood sugar, and rationing his supplies increased the danger of seizures or coma, he said.
Trumble, 52, who started taking PN 13 months ago for colon cancer and severe intestinal problems, said he is grateful to the hospital and getting excellent care but misses his mother, son and 8-year-old grandson, Jordan – and his cats. .
What’s worse, Trumble said, the mother and son, who were getting Medicaid payments to care for him, had not been paid during the two weeks he was hospitalized.
But without IV nutrition at home, he said, “I would starve.”
