Listless. Lethargic. Dehydrated. Sleepy. Young Sofia Schnoke, normally a high-energy, active youth, was suddenly dragging. Suddenly tired --- not the usual energetic, “life in overdrive” kid.
Then came the weight loss. Dramatic weight loss.
Sofia lost 30 pounds that first month,” her mother, Cristina Schnoke, said. was 2017 when the Schnokes’ lives changed forever – Sofia was diagnosed with Type 1 Diabetes, juvenile diabetes.” She was Sofia, a soon-to-be junior at Boerne Champion High School, spent last weekend in Washington, D.C., one of the 160 young participants in the Juvenile Diabetes Research Foundation JDRF) Children’s Congress.
The attendees, including 13 from Texas, addressed lawmakers on bills and measures that not only impact their lives, but the lives, daily routines and bank accounts of entire families.
Sofia’s symptoms popped up quickly and were pronounced.
“For me, I was losing a bunch of weight,” Sofia said. “I am not a person who sleeps a lot, and I was sleeping for hours and hours on end. I was very dehydrated and drinking a lot of water.”
The diagnosis changed everything for the Schnoke family.
“We were the poster family for high carb eating,” Cristina said. “That changed immediately.”
“It’s really like a whole new life,” her father, Ryan Schnoke, said. “Things you take for granted, like ‘I want a snack,’ you can’t do that. You have to check your sugar.
“You need to check … how many carbs are in this item, in that item, when you buy them,” he said. “You have to be on top of the sugar levels all day, all night. We still get woken up at all hours of the night.”
Cristina added, “And you go to the restroom a lot. You don’t have the process in place to break down the sugar, so you’re going to restroom more often.”
Sofia said her symptoms came on quickly. “I know people that have had months and months of symptoms.”
“You can never take a day off when you have high sugar,” the teenager said. “It not only affects your physical health, but your mental health, your parents, your family and those around you.”
Sofia wears a t:slim X2 insulin pump, designed to monitor sugar levels in the wearer.
“It’s still manual, I still have to monitor my carbs,” Sofia said. “It gives me long-acting insulin throughout the day. That’s one less shot I have to take.”
Her parents said the insurance they carry provided for the insulin pump. But Sofia, other JDRF representatives, their families and the hundreds of thousands of others similarly diagnosed and living with J1D, know that’s not always the case.
The Children’s Congress met with lawmakers on Capitol Hill July 9-11, stressing the importance of two pieces of legislation – The Insulin Price Reduction Act and the Special Diabetes Program.
The Insulin Price Reduction Act is three-fold. First, it would encourage insulin manufacturers to reduce their list prices by eliminating rebates used by insurance plans and pharmacy benefit managers that drive up drug costs at the point of sale.
Secondly, it would make insulins eligible for cost-sharing protections, including waiver of any applicable deductible, and limit copays or coinsurance to no more than $35 per month.
Thirdly, it supports patient access to insulins by ensuring coverage and halting medical management requirements that limit beneficiary use.
According to the JDRF website, the Special Diabetes Program (SDP) is a critical program that provides $150 million annually for type 1 diabetes (T1D) research at the National Institutes of Health (NIH).
Together, the SDP and the JDRF efforts are leading to new insights and therapies that are improving the lives of people with diabetes and accelerating progress to cure, treat, and prevent T1D.
“Right now, we’re here advocating for SDP. It’s a vital research program that they are raising (contributions) from $150 million to $175 million,” Sofia said. “It’s the reason why we have things like closed-loop system pumps, continuous glucose monitoring (CGM), and automatic devices that ease the burdens on families.”
“Now,” Cristina said, “if you don’t have the funds or the insurance, you’re poking your kid 10 times a day.”
The Schnokes receive a notice every 5 minutes of what Sofia’s sugar levels are, a benefit of the t:slim unit she wears.
“If you (cannot afford) the technology to manage that, then you are having to get up many times all night,” Cristina added.
The members of the JDRF Texas delegation met with Texas legislators Sens. Ted Cruz (R) and John Cornyn (R), and U.S. Rep. Tony Gonzalez (R). Sen. Susan Collins, (R-Maine) supports the JDRF as she has a granddaughter with diabetes.
Sofia said she wants to educate people about J1D, to “educate them when I can on what J1D is, and support those who are newly diagnosed” and help those who continue to struggle under the weighty costs associated with treatment.
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