The fear started when patients saw their nurses and dietitians posting job searches on LinkedIn.
Their patients with life-threatening digestive disorders depend on parenteral nutrition, or PN — in which amino acids, sugars, fats, vitamins and electrolytes typically are pumped through a catheter into a large vein near the heart.
A day later Optum Rx, another big supplier, announced its own consolidation. Suddenly, thousands were scrambling for their complex essential drugs and nutrients.
“With this kind of disruption, patients can’t get through on the phones. They panic,” said Cynthia Reddick, a senior nutritionist laid off last summer in the CVS restructuring.
“It was very difficult. Many emails, many phone calls, acting as a liaison between my doctor and the company,” said Elizabeth Fisher Smith, a 32-year-old public health instructor in New York, whose Coram branch closed. A rare medical disorder has forced her to rely on PN for survival since 2017. “It added to my mental burden,” she said
CVS abandoned most of its less lucrative market in home parenteral nutrition, or HPN, and “acute care” drugs such as IV antibiotics. Instead, it would focus on high-dollar, specialty intravenous medications such as Remicade, which is used for arthritis and other autoimmune conditions.
Home and outpatient infusions are a growing business, as new drugs for chronic illness expand treatment options and enable patients, providers and insurers to avoid hospitalization. Even the wellness industry is cashing in, with spa storefronts and home hydration services.
But while reimbursement for expensive new drugs has attracted corporations and private equity, the industry is constrained by a lack of nurses and pharmacists. The less profitable parts of the business — and the vulnerable patients they serve — are at risk. This includes the 30,000-plus Americans who rely on parenteral nutrition — including premature infants, post-surgery patients and those with damaged bowels because of genetic defects.
While some specialty drugs are billed through pharmacy benefit managers that typically pay suppliers within weeks, medical plans that cover HPN, IV antibiotics and other infusion drugs can take 90 days to pay, said Dan Manchise, president of Mann Medical Consultants.
“With the margins seen in the industry, if you’ve taken on expensive patients and you don’t get paid, you’re dead,” Manchise said.
In September, CVS announced its purchase of Signify Health, a high-tech company that sends home health workers to evaluate “high-priority” Medicare Advantage patients, according to an analyst’s report. In other words, as CVS shed low-margin patients, it was spending $8 billion to seek more profitable ones.
CVS “pivots when necessary,” spokesperson Mike DeAngelis said. “We decided to focus more resources on patients who receive infusion services for specialty medications” that “continue to see sustained growth.”
DeAngelis said CVS worked with patients to “seamlessly transition their care.” Coram patients, however, described frightening disruptions as other HPN businesses were strained by the new demand from Coram and Optum patients.
Smith convinced her new supplier that she continued to need two IV pumps — for HPN and for hydration. Otherwise, she would have to rely on “gravity” infusion, in which the IV bag hangs from a pole, making it impossible for her to go to work. Smith said a friend had to buy a $1,500 pump for IV hydration.
The new supplier “just blatantly told her they weren’t giving her a pump because it was more expensive, she didn’t need it, and that’s why Coram went out of business,” Smith said.
Many patients who were hospitalized at the time of the switch — several stays a year are not unusual for HPN patients — had to remain in the hospital until they could find new suppliers. Such hospitalizations typically cost at least $3,000 a day.
“The biggest problem was getting people out of the hospital until other companies had ramped up,” said David Seres, a professor at Columbia University’s Institute of Human Nutrition. Even over a few days, he said, “there was a lot of emotional hardship and fear over losing long-term relationships.”
To address HPN patients’ nutritional needs, a team of physicians, nurses and dietitians must work with their supplier, Seres said. The companies run weekly bloodwork to calibrate the 72 ingredients in the HPN bags, all under sterile conditions because infections can be grave for these patients.
As for Coram, “it’s pretty obvious they had to trim down business that was not making money,” said Reddick, noting that Coram and Optum Rx “pivoted the same way” to “higher-dollar, higher-reimbursement, high-margin populations.”
“I get it from the business perspective,” Smith said. But it still left “patients in a not great situation.”
Smith shares a postage-stamp Queens apartment with her husband, Matt. Their place has cabinets and fridges full of medical supplies and two large, friendly dogs. One recent morning, she went about her routine: detaching the bag of milky IV fluid that had pumped all night through a central line implanted in her chest, flushing the line with saline, injecting medications into another saline bag, and then hooking it through a paperback-sized pump into her central line.
Smith has a connective tissue disorder called Ehlers-Danlos syndrome that can cause many health problems. As a child, Smith had frequent issues such as a torn Achilles’ tendon and shoulder dislocations. In her 20s, while working as an emergency medical technician, severe gut blockages left her unable to digest food.
In 2017, she went on HPN and now takes only an occasional sip of liquid or bite of soft food, in hopes of preventing the atrophy of her intestines. HPN enabled her to commute to George Washington University, where in 2020 she completed a master’s in public health.
When she teaches at LaGuardia Community College, Smith is up at 6 a.m. to tend to her medical care, leaves for class at 9:15 a.m., comes home for a midday bag of IV hydration, then returns for another class. She hooks up the HPN bag overnight. She sometimes skips that, “but then I regret it,” she said, describing headaches, dizziness and losing her train of thought in class.
Smith said she hates her dependence on HPN, hates the sour smell of the stuff when it spills and hates the mountains of unrecyclable garbage from the 120 pounds of supplies couriered to her apartment weekly. She also finds the smell of food disconcerting; Matt tries not to cook when she is home. Other HPN patients speak of sudden cravings for pasta or Frosted Mini-Wheats.
Yet HPN “has given me my life back,” Smith said.
Still, she worries about blood clots and infections. IV feeding over time is associated with liver damage. Another risk: If a pharmacist doesn’t mix HPN ingredients in the right order, they can crystallize and kill a patient, said Seres, Smith’s doctor.
He and other doctors would like to transition patients to food, but this isn’t always possible. Some patients seek drastic treatments such as bowel lengthening or even digestive tract transplants.
“When they run out of options, they could die,” said Ryan Hurt, a Mayo Clinic physician and president of the American Society for Parenteral and Enteral Nutrition.
Parts, ingredients shortages
And then there are the shortages.
In 2017, Hurricane Maria crippled dozens of labs and factories making IV components in Puerto Rico; next came the pandemic, which shifted vital supplies to gravely ill hospital patients.
Prices for vital HPN ingredients can fluctuate unpredictably as companies making them come and go. In recent years the cost of the sodium acetate, an electrolyte, has ballooned from $2 to $25, briefly hitting $300, said Michael Rigas, co-founder KabaFusion, a home infusion pharmacy.
“There may be 50 different companies involved in producing everything in an HPN bag,” Rigas said. “They’re all doing their own thing … looking for ways to make money.” This leaves patients struggling to deal with various shortages from saline and IV bags to special tubing and vitamins.
“In the last five years I’ve seen more things out of stock or on shortage than the previous 35 years combined,” Rigas said. The sudden retrenchment of CVS and Optum Rx made things worse.
An infuriating source of concern: the rise of IV spas and concierge services, staffed by moonlighting or burned-out nurses, offering IV vitamins and hydration to relieve symptoms of morning sickness, a hangover, a case of the blahs.
In January, infusion professionals urged Robert Califf, commissioner of the Food and Drug Administration, to examine such use of IV products as a “contributing factor” for shortages.
The FDA has little authority over IV spas. The Federal Trade Commission has cracked down on some spas for unsubstantiated health claims.
Bracha Banayan’s concierge service, IVDRIPS, started in 2017 in New York and employs 90 people, including 60 registered nurses, in four states, she said. They provide IV hydration and vitamins to about 5,000 patrons a year for up to $600 a session. The goal is “to hydrate and be healthy” with a “boost that makes us feel better,” Banayan said.
Experts don’t recommend IV hydration outside of medical settings, but business is booming, Banayan said: “Every med spa is like, ‘We want to bring in IV services.’ Every single paramedic I know is opening an IV center.”
Matt Smith, Elizabeth’s husband, isn’t surprised. He is a paramedic who trains others at Columbia University Irving Medical Center. Given a choice to go “to some rich person’s apartment and start an IV” or carry “a 500-pound person living in squalor down from their apartment,” he said, one is “going to be very hard on your body and one very easy.”
The existence of IV spas can feel like an insult. HPN shortages have caused organ failure, severe blisters, rashes and even brain damage.
“These people are using resources that are literally a matter of life or death to us,” Elizabeth Smith said.
Dread stalks Matt Smith, who daily fears that Elizabeth will call to say she has a headache, which could mean a minor allergic or viral issue — or a bloodstream infection that will land her in the hospital.
Even more worrying, he said: “What happens if all these companies stop doing it? What is the alternative? I don’t know what the economics of HPN are. All I know is the stuff either comes or it doesn’t.”
This article was produced by Kaiser Health News, a program of the Kaiser Family Foundation, an endowed nonprofit organization that provides information on health issues to the nation.