Published March 2, 2019 at 10:01PM / Updated March 2, 2019 at 10:28PM
Sports were always a tricky proposition for 11-year-old Noah Copeland. Diagnosed with Type 1 diabetes at age 3, he had to carefully monitor his blood sugar levels with any sort of activity. If he suspected his blood sugars might be getting too low during a soccer game, he would have to leave the field and prick his finger just to make sure.
Then, in November 2017, the Bend boy got a continuous glucose monitor paired with an insulin pump. Such monitors, usually placed on the arm or the abdomen, measure glucose levels in the cellular fluid just below the skin every five minutes. The readings are sent via Bluetooth to a reader or a smartphone, tracking the changes in blood sugar over time. Instead of relying on a snapshot-in-time with a fingerstick, the monitor can tell him if his blood sugar is heading above or below a healthy range so he can head off any problems before they start.
Noah’s monitor communicates directly with his insulin pump, fine-tuning the amount of insulin he receives. He went from needing seven, 10 or more fingersticks a day to only three. And his self-confidence blossomed.
“Noah has played sports, he’s had sleepovers at friends, because we’re getting real-time readings,” his mother, Amanda Copeland said. “The growth I’ve seen in him and the social confidence with this advanced technology, you just saw this real change in confidence.”
In January, Copeland learned her insurance company would no longer cover the continuous glucose monitor her son had been wearing for more than a year. She pressed the company for more information. What was her son to do now? The monitors need to be replaced every week and she had only a couple left. By mid-February, with no clarification from the insurance plan, Noah went back to fingersticks.
“When this decision came down, it was such a blow,” Copeland said. “I don’t have any answers so it’s hard for me to even figure out how to move forward.”
Over the past decade, continuous glucose monitors have transformed the way people with diabetes manage their care and have dramatically improved the quality of their lives. In Oregon and other states, insurance companies have set new limits on which monitors they will cover, with little communication to patients or their doctors. That’s thrown many families, particularly those on the Oregon Health Plan, into a maelstrom of coverage denials and appeals. Many are running out of the monitors before they get definitive answers, forcing them back to the life of daily fingersticks they thought they had left behind.
“This one piece of technology has been a game changer for everybody who’s been able to acquire it,” said Rita Shearer, a registered nurse and diabetes educator with St. Charles Health System in Bend for the past 25 years. “It’s just frustrating that this is happening for folks who already have more than their fair share of stress and anxiety to manage on a daily basis.”
The value of continuous glucose monitors goes well beyond avoiding fingersticks. Whenever blood sugar is out of the normal range, it starts to damage blood vessels throughout the body. It’s like having shards of glass in your body, Shearer said.
“The more glucose, the more shards of glass,” she said. “And if you go on the simple premise that our blood vessels are just hoses, little hoses and big hoses, it kind of helps people understand what the ramifications can be if we’re not keeping our blood sugars in a safer range.”
Over time high glucose causes irreparable damage to the blood vessels, damaging the brain, eyes, kidneys and heart.
“And it’s totally silent until it’s a big problem.” Shearer said. “If you imagine a child, maybe he doesn’t even have language to tell a parent how they feel, this technology has kind of let them know in advance so that they’re able to be proactive in their treatments instead of reactive.”
With the monitor, Noah can get a current blood glucose level as well as trend indicators. Noah’s mother can track his numbers on her own phone, giving a constant window into how he is doing at school, during sports or at a friend’s house.
Without the monitor, Noah can’t tell when he’s headed out of range in between fingersticks.
“We don’t know if he’s low or high until he’s physically feeling it,” she said. “So his body is already in crisis on some level.”
Dr. Jennifer Schroeder, a pediatrician with Summit Medical Group Oregon, said the monitors have now become a standard of care.
“Quality of life is a big deal for any child living with a chronic disease like diabetes,” she said. “It improves their medical compliance overall and it offers us as health care providers more information about their blood sugars and their trends, which helps us tailor their insulin more appropriately.”
Doctors can download data from the monitors during appointments and see how well patients are able to keep their blood sugar in check. Moreover, the monitors are a safety device for parents, literally allowing them to sleep at night.
“It’s hammered into them when they leave the hospital with their new onset diagnosis of Type 1 diabetes, that hypoglycemia or low blood sugar is a very significant health risk,” Schroeder said. “Especially given that a lot of these kids tend to run low in the middle of the night, when they’re asleep, and often that doesn’t wake them from sleep when they are very low.”
Parents live in fear their child will go to sleep and never wake up. In 1991, researchers reported on a group of young adults and adolescents with Type 1 diabetes who had been found dead in the beds, later coined “dead in bed syndrome.” Evidence suggests such deaths might be linked to a heart rhythm problem caused by low blood sugar levels.
As a result, parents were told to check their children’s blood sugar in the middle of the night just to make sure. Many parents go for years without sleeping through the night.
Kim Daniels’ daughter Emma, 14, of Prineville, was diagnosed with Type 1 diabetes four years ago.
“A lot of times we test her blood sugar right before she went to bed, and if she was below a certain number, I would kind of keep an eye on that,” Daniels said. “So I would probably get up two to three hours into the night and check her blood sugar.”
It was so routine, Emma sometimes slept through the fingerstick. Daniels would wake her only if her levels were low and she needed to eat something. If her blood sugar levels were dropping before she went to sleep, Emma would sometimes overeat to compensate.
“The thing is, you almost always know that you’ll come down from a high blood sugar,” Daniels said. “But you don’t know that you’ll come back up from a low.”
With a continuous glucose monitor, they now set an alarm to signal if her blood sugar gets too low. If Emma doesn’t hear it, her mother will.
“It just gives you that piece of mind,” Daniels said. “Like I can go to bed and I don’t have to worry and she doesn’t have to worry.”
Those worries could be why the use of monitors is climbing faster among children with diabetes than adults. A recent analysis of data from a diabetes registry found that overall use of the monitors rose from 7 percent in 2010-12 to 30 percent in 2016-18. Among children under the age of 6, it rose from 4 percent to 51 percent. An Australian study last year found parents’ fears about low blood sugar events dropped significantly with the use of a monitor, while measures of stress, anxiety, sleep and quality of life all improved.
Parents feel more comfortable letting kids out of their sight knowing they can continue to monitor their numbers on their phone. European researchers in 2014 found that kids who wore monitors at least 70 percent of the time missed fewer school days.
Emma said wearing a monitor has eased her anxiety at school.
“I used to stress out about my blood sugar doing sports and stuff. I never knew what exactly it was,” she said. “And I was worried about my blood sugar being too low and not being able to feel it, and I didn’t want to do sports of do PE or anything because I didn’t want it to drop too low during that time.”
She used to test her blood glucose and give herself injections in class, which gave a certain level of street cred with her fellow classmates.
“They think my pump is really cool now,” she said.
Maddie Reitz was diagnosed as a toddler in 2002 well before the monitors were an option. Her mother, Anne Gibson, checked her blood sugars six to 10 times a day.
“You work it out, like the calm and soothing way that you can pin your child down, so you can get another injection,” she said. “Tuck this arm here, move this leg out of the way.”
By the time Reitz transitioned to a pump and monitor, she had already endured more than 6,000 finger-stick blood tests and more than 4,000 insulin injections. Even afterward, Gibson still woke up every night at 2 or 3 a.m. to check her sensor.
Now Reitz is a freshman in college 1,000 miles away, but the monitor still sends Reitz’s numbers to Gibson’s phone. She’ll call if it seems her daughter is sleeping through alerts. A double beep mean she’s high. A higher-pitch triple beep, means she’s low.
“And when you’re below 50, it beeps four times in a quite raucous way and so it really gets your attention,” Gibson said. “No matter how old you are, how many years of experience you have with it, you have got to have somebody who is also well informed, who cares about you and is backing you up. Because there are times when you just can’t help yourself.”
Gibson said she’s had few problems getting coverage for the monitor under her private insurance plan, but says every year, the rules change and parents much jump through a new set of hoops to get the supplies.
“It still amazes me that for a disease that there’s no cure for, that every time we need to get new sensors for her (monitor) the doctor has to fill out a certificate of medical necessity,” she said. “It’s just overwhelming sometimes.”
The coverage issue affecting Oregon Health Plan members appears to have stemmed from a Medicare decision. In 2017, the federal Centers for Medicare & Medicaid Services established Medicare coverage for continuous glucose monitor systems, but only the second generation models that didn’t require a fingerstick to confirm treatment decisions.
While the Oregon Health Plan still covers both the newer and older types of monitors, some of the coordinated care organizations that manage the care of OHP beneficiaries opted to mirror Medicare’s approach. That includes the PacificSource CCO serving Central Oregon.
Rachel Olufson, of Bend, learned of the coverage change only after six months of trying to get an answer. In July, the prior authorization for her daughter’s continuous glucose monitor expired, and her orders for replacement sensors were being denied by their supplier.
While her daughter, Ava Morris, 10, went back to fingersticks, Olufson burned up the phone lines trying to get to the bottom of the coverage denials. It was only when a nurse at PacificSource with Type 1 diabetes overheard Olufson’s call with a PacificSource representative that she stepped in and gave her the right terminology to get a covered monitor.
Last week, her daughter finally got a new monitor.
“It’s been just a week, but I feel like all of our quality of life has improved,” Olufsun said. “I get to sleep.”
PacificSource officials said patients with older monitors that are no longer covered, can switch to a newer version. The company acknowledged suppliers haven’t always been willing to accept the payment rates that OHP or the CCO is offering.
“There’s a significant issue with finding third parties that will actually take the payment from OHP and distribute the product,” said Dr. Bruce Boston, a pediatric endocrinologist at Oregon Health & Science University. “All of our OHP patients are currently having difficulty getting continuous glucose monitors.”
White Plains, New York-based Byram Healthcare is one of four primary suppliers of monitors to Oregon Health Plan members.
“Unfortunately, there are times we cannot due to low reimbursement rates adopted by some plans,” the company said in an email statement. “This is currently the case with Oregon Medicaid.”
OHP set its payment rates for monitors at 82.6 percent of the Medicare rate for newer models, and at 75 percent of the retail price for the older models that Medicare doesn’t cover. CCOs can opt to pay a higher rate but many follow the OHP pricing structure.
Byram officials said once payment rates are more than 10 percent below the Medicare rates, it becomes very difficult for them to offer those technologies.
It’s unclear whether the current coverage problems for OHP members are a temporary problem that will get resolved as more patients move to the newer monitors. Boston said new products are being worked on that are more accurate and promise to significanly improve diabetes care.
“This is an emerging technology that I think is going to really change how we manage kids,” Boston said. “These newer CGMs, because of their accuracy are going to work much better with the pump systems than previous CGMs.”
Within in the year, he expects systems to hit the market that can accurately measure glucose levels without a fingerstick and communicate those levels to an insulin pump that will automatically deliver the right amount of insulin.
“I think there’s going to be a number of advances in technology in the next two to three years that are going to really change how we approach diabetes care in kids.”
— Reporter: 541-633-2162, firstname.lastname@example.org