The Atlanta Journal-Constitution

Home nutrition IV patients fear shortages

Health care layoffs, prices, low supplies create anxiety.

- By Arthur Allen 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.

The fear started when patients saw their nurses and dietitians posting job searches on Linkedin. Word spread to Facebook groups, and patients started calling Coram CVS, a U.S. supplier of the compounded IV nutrients upon which they rely for survival. CVS Health confirmed on June 1 it was closing half its Coram home infusion branches and firing about 2,000 nurses, dietitians and pharmacist­s.

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-yearold 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.”

Juggling life

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.”

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.”

 ?? PHOTOS BY ARTHUR ALLEN/KAISER HEALTH NEWS ?? Elizabeth Fisher Smith (with husband Matt and their dogs) has a rare medical disorder that forces her to rely on parenteral nutrition. Home and outpatient infusions are a growing business, but less profitable parts are strained.
PHOTOS BY ARTHUR ALLEN/KAISER HEALTH NEWS Elizabeth Fisher Smith (with husband Matt and their dogs) has a rare medical disorder that forces her to rely on parenteral nutrition. Home and outpatient infusions are a growing business, but less profitable parts are strained.
 ?? ?? Elizabeth Fisher Smith shows how she uses syringes to inject medication­s into her IV bags and fluids to flush out the lines, which helps maintain sterility and avoid potential infections.
Elizabeth Fisher Smith shows how she uses syringes to inject medication­s into her IV bags and fluids to flush out the lines, which helps maintain sterility and avoid potential infections.

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