When first meeting her, Rachel Brace seems like any other eight-year-old girl, albeit a little more outgoing than some.
When you learn Rachel’s story, that smile on her face seems all the more exceptional.
At 15 months old, Rachel’s parents started to notice something wasn’t quite right about her. She couldn’t stand properly. Her mother, Kimberely Brace, thought there was something wrong with Rachel’s feet or legs.
It turned out to be a very severe case of Type 1 diabetes.
By the age of four, Rachel was having her fingers poked at least 10 times a day for blood-sugar testing and was receiving up to eight needles of insulin a day.
“It’s devastating to have to poke a little girl that many times,” says Brace.
Some relief came when Rachel got an insulin pump after being on the list for one, but the child’s schedule and that of her parents is still rough, to say the least.
It starts at 6:30 a.m. and involves her mother going to school at some point every day to check on her. After Rachel goes to bed at 8:30 at night, one of her parents checks her blood sugar levels at 10:30 p.m. and then again at 3 a.m. Rachel is so accustomed to it she doesn’t wake up when her parents prick her fingers.
Even with such diligence, Rachel’s diabetes is oppressive enough to be a threat.
“I’ve been stood up in the kitchen and she collapses on the floor,” says Brace.
That kind of thing can happen about once a month, she adds. They’ve almost lost Rachel four times since she developed diabetes.
But there’s something new on the medical technology market that could make life for the Braces a lot easier and Rachel’s, in particular, a lot safer.
It’s called a continuous glucose monitoring system (CGMS).
The CGMS is a sensor that’s injected under the skin and sends continuous readings of blood-sugar levels via a transmitter to the insulin pump throughout the day and night.
The CGMS identifies fluctuations and trends that might otherwise go unnoticed, even with the work Rachel’s parents are already putting into monitoring her sugar levels. It detects dangerously low overnight blood-sugar levels and high blood-sugar levels that can spike between meals. It can also help identify how things like diet and exercise affect the blood sugars, giving Rachel a shot at a more normal life. Her diabetes is so unpredictable now that Rachel is almost confined to the house Brace says. She has never been to a sleep-over because her sugar levels have to be checked throughout the night. She requires constant monitoring and care, Brace says.
The CGMS takes 288 sugar readings a day. Every five minutes it sends a new reading to the insulin pump. After six days, the sensor is replaced.
“This is the next thing to a pancreas. ... This is the best that it’s going to get for as long as it’s going to be,” says Brace.
Of particular value to the Braces is the fact the CGMS will send an alert 15 minutes before Rachel’s sugars go low or high. This will help Rachel in adjusting her insulin before the drop or rise actually happens, her mother says.
Right now, Rachel gets 10 to 15 finger pokes each day, more when she’s sick. And that’s been the case every day for the past seven years. With the CGMS, she would need just two to keep the pump calibrated and keep it active — one in the morning and one at night.
Twelve fewer finger pricks a day would be life-changing for Rachel, says Brace.
The problem is the CGMS is beyond the Braces financial abilities and neither their insurance nor MCP will cover the device.
The initial cost of the CGMS is $1,500, though there is a $700 promotion price on now that ends April 26. After that initial purchase, there’s a cost of $350 per month.
Brace had to quit work years ago to take care of Rachel. She and her husband also have two other young children. Their medical insurance is quite good, covering the barrage of other medical costs Rachel’s condition requires, but they still have to pay for it up front before being reimbursed. Between the prescriptions and the regular drugstore purchases needed, their bills in that area alone added up to more than $10,000 last year.
Her insurance company told her there are probably only five companies in the country that would cover the cost of the CGMS. Since the new technology was released on March 25, she’s been emailing everybody from the premier to members of both opposition parties — anybody she thinks might be able to help .
So far the message has been the same, she says.
“Sorry. It’s not covered.”
There’s another line Brace often hears that’s even more frustrating.
“It’s a sin that you’re working people.”
That line particularly grates Brace.
“I don’t think that your child’s life should depend on if you work or if you don’t work. If you have credit cards or if you don’t. Or if you have money in the bank,” she says.
As for Rachel, she doesn’t sugar-coat much when asked about how it feels to be jabbed 10 plus times a day.
“It hurts!” she says.
When her sugars drop, she says she feels weird. Her mother is worried that so many fluctuations in her daughter’s sugars will lead to larger problems later in Rachel’s life.
“With all the ups and downs and all the highs and lows ... someday Rachel is going to have trouble with her kidneys.”
Brace says the CGMS will put a stop to the fluctuations because it lets the diabetic know before the sugars drop or spike too much.
It’s tempting to just charge the price of the device, she says, but financially it’s too risky, even with the benefits to her daughter’s life.
In the meantime there’s no break from the work and managing the risk of Rachel’s condition.
“Diabetes don’t take a vacation. Diabetes don’t sleep. This is 24 hours a day, seven days a week,” says Brace.
As for who to contact next, Brace is out of ideas. She says the only thing for her to do is to continue being mother, doctor and nurse for her daughter morning, afternoon and night.