I will never forget that day in 2012 when our doctor told me and my husband our 2-year-old son had diabetes. At first, we were frightened for his health and future. We knew that if the disease wasn’t managed correctly with the right diet, dosage of insulin and vigilant care, he could not only get very sick, not only potentially lose his sight or a limb — but he could die. We were devastated all over again when our almost-3-year-old daughter also was diagnosed with Type 1 diabetes earlier this year. The medications, the insulin pumps and the glucose monitors our son and daughter rely on are necessities. Having them is literally a matter of life and death.
That is why the AHCA worries us so much. I am self-employed, and my husband does not receive insurance through his employer. Our family relies on an HMO plan we purchased on the D.C. “Obamacare” exchange. It costs us about $18,000 a year to insure our family. Even with this coverage, we still spend about another thousand more on health care. The diabetes supplies alone for our two kids cost about $12,000 a year — and, again, we can’t simply look for cheaper options or do without some supplies without seriously jeopardizing their health. When our insurance refused to cover the long-acting insulin my little girl used right after she was diagnosed, we were forced to borrow some from our friends who had extra so we could stabilize her for a month. Then, we had to quickly put her on an insulin pump, which our insurance thankfully did cover, and switch her to the short-acting insulin allowed by our plan.
The other reality families of diabetes patients have to deal with is that at some point, a trip to the emergency room is inevitable. Twice last year, for instance, our son, sick with a stomach bug, went to the hospital with potentially life-threatening dehydration, which resulted from the dangerous and rare combination of high ketones and low blood sugar — a combination that could put him in a coma and can only be treated in the hospital.
The ER co-pay cost us $300 each time. It’s not a small sum, but with our insurance, thankfully, it was all we had to pay. Our plan isn’t perfect, and our premiums could go up by nearly a third next year. But that’s still better than what would happen if the AHCA becomes law. My two kids with diabetes would probably become uninsurable on the individual and small-group market, just as patients with preexisting conditions were before Obamacare. One trip to the ER would be financially devastating. Just paying for the pumps, monitors and insulin that keep our kids alive would saddle us with an enormous financial burden, one we might not be able to overcome.
We aren’t alone, either. According to the Type 1 diabetes advocacy group JDRF, 1.25 million Americans have the disease, and all of them have to worry about being charged more or kicked off insurance for it, too. If premiums rise, many patients won’t be able to afford the pumps and blood glucose monitors like my kids wear — devices that have been lifesavers, multiple times over, and help to prevent serious complications. Instead, children with diabetes will be discriminated against for an illness that’s completely out of their control.
I am not a politician or a health-care expert. But as a mother, an American and a human being, I know that taking affordable health care away from kids with diabetes — or any chronic disease — is just wrong.
My husband and I have joked about what country we’d have to move to if the AHCA passes. It’s sad that we even have to discuss it. For my kids and the hundreds of thousands like them, I am going to do everything I can to make sure this bad bill doesn’t become law.