The 100 or so children in Colorado who rely on backpacks of liquid nutrition to survive got a lifeline from lawmakers this spring.
Legislation passed in the final days of the session will raise the reimbursement rates for pharmacies that make the unique-to-each-person mix of calories, vitamins, minerals, fats and sugars that keep them alive. The measure is a relief to parents who’ve grown increasingly nervous in the past year as all but one pharmacy left the state or stopped offering the bags of nutrition, citing low reimbursements from Medicaid.
“Are you listening, pharmacies?” asked Rep. Sheila Lieder, a Littleton Democrat, as the House health committee passed the bill. “Please come and take advantage and come and help these people out.
“It’s for the kids.”
Lieder and other lawmakers on the committee passed the legislation 12-0, despite concerns about mandating reimbursement rates in statute. Rates are normally set by the Medicaid division in the Colorado Department of Health and Human Services.
But the lack of pharmacies had become too alarming not to take action — even during a state budget crisis, they said.
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 their nutrition.
Pharmacies that responded to a state survey said it costs about $235 per patient per week to make the nutrition. But the state Medicaid program, the safety-net government insurance program for people who have low incomes or disabilities, has been reimbursing the last remaining pharmacy just $11 per child, per week.
The legislation, now awaiting Gov. Jared Polis’ signature, mandates that Medicaid has to reimburse pharmacies at least 30% of their costs, increasing their “restocking fee” to $70 per week.
The original version of the measure had called for more than $100 per week per patient and an annual cost of about $800,000. The version that passed has an annual price tag of about $110,000, covered by state and federal funds.
The goal is to get more pharmacies to offer the nutrition in Colorado so that parents do not have to worry so much about supply shortages or delivery delays that would mean their children end up in a hospital bed.
The majority of children who need the nutrition, called parenteral, were born premature, before their digestive systems were fully developed, or had to have part of their intestines surgically removed. Others, including 7-year-old Norah Gutknecht, were born with a genetic condition that causes their intestinal system not to function.
Norah, whose mother testified before the committee, wears a backpack that is connected to a port in her chest for 16 hours per day — 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, said her doctor, Lindsey Gumer, a pediatric gastroenterologist at Children’s Hospital Colorado and director of the intestinal rehabilitation program.
The legislature plans to review the measure’s effects a year from now and see whether the boost in payment was enough to entice more pharmacies into business.
“We need more than just one pharmacy,” said Rep. Gretchen Rydin, a Littleton Democrat and a lead sponsor of the legislation “There is great fear among those who are in the patient community or if these young kids or babies or even some adults can’t get this nutrition they are going to end up back in our ERs.”
“There is no other pathway for these people,” added cosponsor Rep. Mary Bradfield, a Colorado Springs Republican, as she asked for votes. “This is it. I hope you will think about that.”