On Monday, Nicole Nichols, mother of an 8-year-old girl with type 1 diabetes, wrote her state lawmakers about the challenges some young patients on public assistance are having obtaining life-sustaining medical supplies.
“I am the mother of a child with type 1 diabetes and an advocate who works with The Diabetes Foundation of MS. We have recently begun having a lot of problems with Medicaid/CHIPS coverage of the essential diabetes supplies needed, not only to keep our kids healthy, but to literally keep them alive. Many parents, myself included, have found that while supplies are deemed necessary and technically covered by insurance, we cannot get Medicaid and/or CHIPS to pay for them, and suppliers aren’t able to help us.
They are normal kids who lead full lives, as long as they have the proper diabetes care!
I have spent countless hours, day after day, calling Medicaid/UHC Community Plan, researching medical suppliers, reading Medicaid Policy guidelines and UHC Community Plan coverage guidelines, even researching Medicaid fee schedules, in an attempt to get my daughter’s supplies covered and shipped. I am not the only parent who has been through this! No parent should have to fight for so long for their child’s essential medical supplies and medical needs when it’s explicitly stated as a covered benefit. Yet, I have gotten nowhere.
Is there someone in the legislature that can and will help these children stay healthy? They must have these medications and supplies which administer the medications in order to remain healthy, and quite honestly, alive!”
The response she received from State Representative Jeffrey Guice was shocking.
Guice replied to Nichols’ message with just two sentences: “I am sorry for your problem. Have you thought about buying the supplies with money that you earn?”
Nichols fired back an e-mail, outlining all of the supplies her daughter and husband (also a type 1 diabetic) use monthly in order to live:
“Thank you kindly for your response.
I have thought quite often about buying these supplies with money that myself and my husband earn. Unfortunately, if we were to pay out of pocket for these supplies, with money that we earn, that sum would leave my family of four homeless.
You see, type 1 diabetes is an expensive disease.
Insulin- $400 per vial of humalog (2 vials a month for my daughter, 3 for my husband with T1)
Insulin #2- $150 per vial of Lantus (for emergency pump failure)
Test strips $300 per month (per person)
Insulin pump supplies $375 per month (per person)
Dexcom CGM sensors $300 per month (per person)
Glucagon $450 per syringe
Ketone strips $80 for a box of 10
$150 per month in various smaller prescriptions such as adhesives, alcohol swabs, glucose gels, etc.
Do you earn enough money to pay for these items every month?
While you may, my husband and I, unforunately, do not. We are working individuals, with college degrees, a small home, older but reliable vehicles, and without Medicaid to cover the LIFE SUSTAINING medications and supplies that my child needs, we would be homeless.
Insulin alone amounts to more than my house payment every month. Insulin literally keeps this little girl alive.
So, thank you for your incredibly rude response sir. I can see exactly how far out of touch you really are with the residents of Mississippi.
And might I add, belittling the mother of a child with a chronic health condition, who is appealing for your assistance on behalf of the CHILDREN OF MISSISSIPPI is reprehensible. You are pitiful excuse for a human being, Representative Jeffery Guice.
Nicole Nichols, MS Resident”
Costs for blood glucose test strips, insulin vials, insulin pump supplies, alcohol wipes, and the many other supplies total over $4,000 a month if paid out-of-pocket, according to the totals Nichols provided in her e-mail. As Nichols shared, the family would be homeless if they had to pay for the supplies in full. She has also noted that she and her husband are college educated and her husband works two jobs, but the cost of the supplies is simply too high, especially in Nichols’ case where there are two diabetics in the home.
Type 1 diabetes is a disease in which the body ceases to produce its own insulin. Formerly known as “juvenile diabetes,” 5 to 10 percent of all cases of diabetes fall into the type 1 category. It’s a chronic, autoimmune disease for which there is no cure, and those with the condition must administer insulin via syringes, pre-filled insulin pens, or an insulin pump. One’s blood sugar level needs to be checked constantly throughout the day to make sure that the glucose level isn’t too high or too low, because either of these can cause serious symptoms and side effects, sometimes requiring emergency medical attention and hospitalization. Type 1 diabetics are at a higher risk of devastating medical issues including blindness, certain cancers, sexual dysfunction, other autoimmune diseases (such as celiac), kidney failure, amputation of lower limbs, depression, anxiety, and many more.
When I read Nichols’ story, I was immediately angered. As a type 1 diabetic myself, what Representative Guice clearly doesn’t understand is that the medical supplies that I and Nichols’ husband and daughter need are not optional. Without the necessary items to test our blood sugar, administer insulin, and monitor our glucose levels, we will die. There are no less-expensive or alternative treatments for type 1 diabetics.
Guice’s dismissal of a child’s medical needs and a mother’s plea isn’t indicative of all. Nichols noted in a video interview that some government agents replied positively. However, she’s very frustrated that Guice would be so rude, especially because his online bio states that one of his committee memberships is with Public Health and Human Services and that he is on the Board of Directors for the Boys and Girls Club of the Gulf Coast.
Nichols posted screenshots of her e-mail communication with the Living in the World of Test Strips Facebook community, and the photos have been shared over 6k times from that post alone. She’s received lots of support from people all over the country, including many individuals like myself who are living with type 1 diabetes.
Though it’s not easy to be a type 1 diabetic, one perk I have is being an adult with the disease. I can make management decisions, drive myself to the doctor’s office, and question insurance companies when I get a medical supply price quote that seems off. But children are much more vulnerable. They are at the mercy of adults, such as their parents and lawmakers, to make the right decisions to keep them not only healthy, but alive. And as for Representative Guice, a person with the privilege of serving his state’s constituents, he should think twice before attempting to dismiss a mama bear.
h/t: ABC NewsMore On