Thousands of Patients Dependent on IV Nutrition Face Shortage Helene, CVS

The CVS representative entered Lisa Trumble’s third-floor Berkshire Medical Center hospital room in Pittsfield, Mass., to announce that everything was ready for Trumble to return home, where she relies on IV nutrition because of severe intestinal problems that leave her unable to eat.

It was Tuesday, October 8. The next morning, a social worker and a doctor woke Trumble up to tell him that his discharge had been cancelled. CVS would no longer provide nutrition at home and she had to remain in the hospital. “They dropped me between Tuesday night and Wednesday morning with no regard for my life or my health,” Trumble said from his hospital bed eight days later.

After this article was published, Trumble said she was being discharged, after her caregivers found a replacement service. “I’m just afraid their supplies will run out,” he said. “My backup plan is always to go back to the hospital.”

Trumble is among the 25,000 patients in the United States whose survival depends 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 produced 60% of the fluids with which its sustenance is mixed. About two weeks later, CVS announced that its Coram division, a leading infusion pharmacy, was exiting the PN and IV antibiotic business.

The hurricane prompted Baxter International to ration its dwindling supplies. Pharmacies that supply Trumble and other patients like her were already affected by shortages, and rationing means the remaining infusion pharmacies can’t take on the customers cut off by CVS, said David Seres, director of medical nutrition at the Medical Center of Columbia University in New York. .

At the Mayo Clinic in Rochester, Minn., seven or eight patients were ready to go home Tuesday but could not be discharged because no infusion company would accept them, said Manpreet Mundi, a Mayo endocrinologist. Patients get sick within a day or two without that nutrition, he said.

By Oct. 18, household supplies had been located for all but a few, Mundi said. “A lot of public pressure” on Coram was starting to take effect, he said.

Although the FDA is allowing emergency imports of IV fluids removed by Helene, as well as the production of some of the fluids by US compounding pharmacies, it is unclear how long it will take to replenish supplies, he said. said Mundi, who is a board member of the American Society of Parenteral and Enteral Nutrition and a medical advisor to the Oley Foundation, which advocates for PN patients. “We’re trying to raise awareness that this could get worse before it gets better,” he said.

Patients dependent on NP have a variety of conditions that make them unable to digest food. Some have congenital abnormalities or disorders such as Crohn’s disease that led to surgical removal of sections of the intestine. Others were scarred by cancer, car accidents or gunshots, or are born prematurely with underdeveloped intestines. In most patients, the fluid is pumped through a catheter into a large vein near the heart.

A crisis hit that 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 a possible restructuring, on Oct. 8 began telling its remaining 800 to 1,000 PN customers that they should find other infusion pharmacies. A press release provided to KFF Health News suggested the phase-out would last until January, but for patients like Trumble, the impact was immediate.

Highly specialized infusion medicine is “a challenging environment” for all companies “and Coram has not been immune to these challenges,” the CVS statement said. “As such, we have re-evaluated our service offering.”

When asked about Trumble’s case, CVS Health spokesman 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 usually hard enough for these patients to find new suppliers for their supplies, which can include 120 pounds of IV fluid per week.

Coram’s departure “made a big crisis worse,” Mundi said. “It’s become kind of a double whammy.”

Baxter International’s North Cove plant produced most of the country’s high-concentration dextrose, an important source of energy for NP patients, as well as saline and sterile water, also vital supplies. A week after Helene hit, Hurricane Milton threatened the facilities of sterile IV fluid supplier B. Braun Medical in Daytona Beach, Florida. The federal government helped transport 60 carloads of the company’s inventory to safety, but the plant was spared the brunt of the storm. It restarted production on October 11.

This was a huge relief to Beth Gore, CEO of the Oley Foundation. She, her husband and six adopted children braved the storm’s seven hours of wind at their home near Ruskin, Florida. Milton destroyed a car and part of the roof, but the family prayed through it all and somehow never lost power, even though their neighbors did, Gore said. This kept the IV fluids fresh and the internet connected, which calmed the kids down.

Coram has provided PN to her youngest son, Manny, 15, for 13 years, and the family will have to find another provider, she said.

“There has been no relief” since Coram cut its services in 2022, Gore said. “Now there’s this new twist.”

Her son receives care through Medicaid, whose reimbursement nearly provides break-even margins for many infusion pharmacies, she said. Insurance limits, state licensing differences and very specific nutritional needs pose challenges for patients seeking new IV providers at 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 prioritizes hospital patients over home infusion companies, which lack backup supplies, Mundi said.

“We’re all on the phone 24 hours a day,” said Kathleen Gura, president-elect of the American Society for Parenteral and Enteral Nutrition and director of the clinical pharmacy research program at Children’s Hospital Boston. His team is scrambling to find new home IV nutrition providers for Coram’s 20 patients among the 150 he sees.

“Some kids have a situation where they can’t absorb anything through the intestines and will die of dehydration if they can’t get an IV,” Gura said.

The IV fluids lost in the Baxter disaster are key to all types of hospital care. Many U.S. hospitals are conserving fluids by giving some patients oral hydration instead of IVs, or 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 would allow the government to order companies to prioritize rebuilding the Baxter plant.

The military flies in supplies from Baxter plants overseas, Saha said. Premier has also asked the FDA to include additional PN ingredients on its shortage list, which would allow large composting facilities to produce the materials.

Ellie Rogers, 17, of Simpsonville, South Carolina, fears the worst if she can’t get her supplies. She suffers from a number of immunological and neurological diseases that require her to get four liters of IV fluid daily to stay alive, he said.

Their provider, an Option Care Health pharmacy in South Carolina, informed the family on Oct. 14 that instead of their weekly supply, it was sending them enough bags for a day or two. “They don’t really know when they’re going to get what they need,” he said. Cutting back on infusions in the past has led to dizziness, nausea and blood pooling that “felt like my veins were going to explode.”

On Oct. 7, Crohn’s disease patient Hannah Hale’s infusion pharmacy called to say it couldn’t fill her weekly order of IV bags, urging her to find a new pharmacy .

“I called 14 infusion pharmacies and I couldn’t find anyone to take it,” Dallas, 37, said. She suffers from weight loss and low blood sugar, and rationing her supplies increases the danger of seizures or coma, he said.

Trumble, 52, who started PN 13 months ago because of colon cancer and severe bowel problems, said she was grateful at the hospital and receives excellent care, but missed the his mother, son and 8-year-old grandson, Jordan, and their cats, during his 17-day hospitalization.

What’s worse, Trumble said, her mother and son, who receive Medicaid payments to care for her, didn’t get paid while she was away.

But without intravenous nutrition at home, she said, “I would starve.”

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