Other kids regularly ask Norah Gutknecht, 7, about the backpack she never takes off. Or why she does not eat or drink anything at school or at birthday parties or ever.
She loves riding her bike, making art, running and playing with the rest of the first graders, but the “sassy and spunky” girl is different in one huge way — without the backpack containing liquid nutrition that feeds her body through a port in her chest, she would die.
There aren’t that many children in Norah’s situation in Colorado, about 65-70 who are patients at Colorado Children’s Hospital’s intestinal rehabilitation program, yet the system that keeps them alive is monumentally important. And it’s falling apart.
A single pharmacy that can supply the intravenous nutrition for these children and accepts Medicaid insurance remains in Colorado.
Several years ago there were six specialized infusion pharmacies in the state. Two years ago, the number dropped from four to two, and then to just one last year. That means kids from across Colorado, even on the other side of the mountains, are relying on one supplier to formulate and deliver the unique mix of vitamins, minerals, sugar, fat and calories that keeps them alive.
Already, there have been shortages of supplies, like extra pumps. Norah had to sit in her first grade classroom with an IV pole looming above her desk because she could not get another pump when she needed extra fluids.
The pharmacies have left Colorado or stopped supplying what’s called parenteral nutrition altogether because of skyrocketing operational costs and low reimbursement rates they receive from Medicaid, the federal-state health insurance program for those who have low incomes or disabilities.
Norah Gutknecht, 7, who has a rare genetic condition that causes her digestive tract not to function, wears a backpack with a nutrition bag that is connected to a port in her chest. (Provided by Gutknecht family)The state Medicaid program is reimbursing just $11 per child, per week.
The system has become so fragile that two lawmakers, a Republican and a Democrat, have introduced legislation to bump the reimbursement to $33.50 per day, or $235 per week — an amount that would help the one remaining infusion pharmacy break even and perhaps encourage some others to reopen.
But the bill, passed by the Senate Health and Human Services Committee, has been lingering before the Appropriations Committee without a vote for more than a month because of one big problem — a $733,000 annual price tag in a year when Colorado is dealing with a budget crisis.
The bill’s main sponsors, Sen. Kyle Mullica, a Democrat from Adams County, and Sen. Cleave Simpson, a Republican from Alamosa, said they were hoping to eliminate or reduce the cost of the proposal by negotiating with Medicaid officials at the Colorado Department of Health Care Policy and Finance. For now, a legislative fix to the precarious health issue is on hold.
No backup, no safety net
Norah, who was born with a rare genetic disorder that causes the muscles and nerves in her digestive system not to function, will need infusion nutrition for her entire life.
The majority of children who need parenteral nutrition were born premature, before their digestive systems were fully developed, or had to have part of their intestines surgically removed, said Dr. Lindsey Gumer, a pediatric gastroenterologist at Children’s and director of the intestinal rehabilitation program. Some kids with what’s called short-bowel syndrome might eventually be able to wean off of IV nutrition, she said.
Most of Gumer’s patients need IV nutrition 10 to 22 hours per day. Norah wears her backpack for 16 hours — from 7 p.m. to 11 a.m., about halfway through the school day.
The only alternative is to lie in a hospital bed, at a cost of about $10,000 per day, Gumer said.
One of Gumer’s patients, a boy in Grand Junction whose intestine was twisted and removed when he was a baby, had a line break in his parenteral nutrition system, an issue that the local hospital could not repair. The family drove five hours to Children’s Hospital as the boy, his glucose levels dropping, vomited and became lethargic. They arrived in Aurora in time for doctors to save him.
“Their blood sugars can drop very seriously and very rapidly,” Gumer said. “It can be life- threatening.”
Children’s Hospital tries to make sure that families, especially in rural Colorado, have extra fluid bags in case a blizzard or some other issue delays their weekly delivery of nutrition. But knowing there is only one pharmacy — and no backup — is “anxiety-provoking,” the doctor said.
If the last remaining pharmacy were to close, Gumer’s patients would have basically two choices: move into the hospital, or move to another state. And they would have to take care in choosing which state, because Colorado isn’t the only place with a dwindling number of infusion pharmacies. Florida is also down to just one, Gumer said.
Liquid nutrition in backpacks has been standard treatment for children with short-bowel syndrome or intestinal genetic disorders for about three decades, the doctor said.
“Otherwise, they would have to live in the hospital for weeks, months, years, lifelong,” she said. “Now, thank God, in 2025 we have the ability where our patients can be at home, and they can go to baseball practice, and they can go trick-or-treating, and they can participate in their activities, let alone going to school. Their parents can hold jobs. They’re not taking beds at the hospital which are needed for other acutely ill children.”
Option Care Health is the last specialized infusion pharmacy left in Colorado that accepts Medicaid. A handful of families with private insurance and Medicaid as secondary insurance have been able to order nutrition from out-of-state pharmacies that ship to their homes, but that’s an unsettling option too, since the specialized pharmacies are struggling across the country.
At Option Care, the nutrition compounds are formulated in a sterile environment by highly trained staff. Filling them with the unique specifications of each patient requires staff time to consult with doctors, and then the pharmacy has to ensure they get delivered each week to every patient’s home, said Shane O’Connor, pharmacy manager at Option Care.
“There is a lot that goes into making just one bag,” he told lawmakers during the committee hearing.
FDA regulations meant to make the compounds safer have also made them more expensive, pushing some from pennies to $1,000 per vial, according to testimony before the Senate committee. Workers are also more expensive and harder to find since the pandemic. And 17 of the 24 ingredients needed for the nutrition bags have been in chronic shortage during the past five years.
“It’s such a fragile network right now and there is no safety net,” Gumer said.
36 hours to find a new nutrition delivery
It was clear soon after Norah was born that something was wrong.
She was flown from Greeley to Denver, where doctors tried to figure out why she was so sick and vomiting a green bile. She was losing weight. By 4 months old, she was on parenteral nutrition, and at 9 months, she was diagnosed with a genetic condition so rare that she was only the 40th person in the United States known to have it.
Norah Gutknecht, 7, rides her bike down a neighborhood street. (Provided by Gutknecht family)Now, Norah goes to school and plays with her friends in the neighborhood. She hooks up to her IV nutrition at 7 p.m., wears the bag in her backpack to school each day, and when her classmates go to the cafeteria for lunch, she goes to the nurse’s office and has her pump unhooked.
“If you didn’t know how sick Norah really is, if you just saw her in our neighborhood or at a park, you would have no idea the amount of medical stuff that she has every single day to get her to this point,” said her mom, Kristin Gutknecht.
Kristin and her husband, Josh, mix the nutrition and connect their daughter’s nutrition bag to her port every single evening. They are dependent on the pharmacy delivery that comes each week.
The family had used another pharmacy for six years, until last fall when they received 36 hours’ notice that it would no longer make parenteral nutrition. “As of tomorrow, we are not going to deliver that to you,” Gutknecht said, recalling the gist of the message. “And so we were in a scramble. That day we picked up Norah from school and it was, are we going to have it delivered to our house or does she have to go be admitted to the hospital?”
It was a major relief when the delivery from the last pharmacy left came the next day. But Gutknecht worries what would happen if that one closes, too.
“It’s a scary thing as a parent,” she said. “I already have such a limited way to keep my child alive, but now we only have one company and one pharmacy.”
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