It’s a call to action day again. Please read below and take the action I request at the end. Let’s see if we cannot show this mom – and the world – the right way to help families in need with diabetes. Please read, share and respond.
I met Deborah* (not her real name) about six years ago, shortly after her then three-year old son was diagnosed with Type 1 Diabetes. I went to her house to deliver a Bag of Hope to her and her son and right away, I knew this was a special case. I knew this probably would not be a family who would be making a major gift to JDRF or even putting a walk team together. Deborah, you see, was a young single mother, struggling to get by even before her son was diagnosed. I knew this was going to be one of those situations I absolutely love: Doing something helpful simply for the sake of it being the right thing to do.
Over the years, I’ve heard from Deborah from time to time. I remain impressed with her absolute dedication to doing the very best she can for her son, even in her difficult circumstances. She works as a waitress (after having to quit her full-time job because she could not afford the kind of care she needed for her tiny son with diabetes while she worked). She is constantly learning more about his care needs, diabetes in general and parenting a child with diabetes. She may not hold a Master’s Degree or even close to that, but she’s dedicated to learning all she can and doing the best she can.
I tip my hat to Deborah because raising a child with diabetes for me – with my fully supportive husband, flexible personal career and decent bank account to back me up – has been the biggest challenge of my life. She’s doing it without any of that. Bravo.
So when she called me the other day with a request for help, I knew I had to act fast. Through her years of learning, Deborah had come to realize that moving from multiple daily injections to pump therapy was a good choice for her son. She took the time to investigate and learn; she even went to some free educational classes at a Boston Hospital to bone up on the details before making the final decision.
And then she felt she was ready to go for it. With the blessing (and signed approval) of her son’s endo and CDE, she contacted her insurance plan and let them know she’d be making the switch.
I have to stop her to tell you one detail: Deborah’s son is on a public assistance health program called “Mass Health.” Mass Health is in place to serve children exactly like Deborah’s son. She’s a hard working single mom with little family support and no real way to score a job with primo benefits. She lives simply and does not “take for the sake of taking.” Her son – and she – deserve support in their time of need. So I’m thankful there is Mass Health for them. There is nothing Deborah would want more than to not need it; but that’s not in the cards right now. I don’t have one ounce of regret at my tax dollars going to support her son’s battle with diabetes.
In any case, Deborah was completely shocked when Mass Health turned them down for pump approval. Again I note that the Endo and CDE feel this is the best treatment for the child. The mother agrees and has been educated. The child is vocal about being ready. And yet, no go.
The reason? Deborah, it seems, has done too good a job of caring for her child with diabetes. According to Mass Heath regulations pumps are only approved for people with a1cs over 7.0. Deborah, despite all the challenges of her life, has been able to practice remarkable tight control in her son’s care.
Her prize for that remarkable feat: pump denial.
There are so many things I could say here (and so many ways I could pound my head against the wall over and over screaming “Come on!”) First of all, her son will soon be an adolescent. You know those creatures with raging hormones, crazy growth spurts and the like? Yep, that will be her son, and trust me; he’ll have way more to contend with than a Peter-Brady-esque crackling voice at a song competition. He’ll have crazy blood sugar swings. Days he just does not want to pull out a syringe. Rebellion. A pump, even the most simple diabetes “expert” knows, could very well help with that.
Second, the kid and the mom want it. Look, battling diabetes 24/7 stinks. We all burn out sometimes and we all need change. Despite their remarkable ability to wage war on D up until now, the mom and the son need change. What’s so wrong about that?
And guess what, Mass Health? An insulin pump is not fun or cool for a boy, really. It’s not an ATV. Or Super Mario Brothers. Or an Ipad. It’s a complicated miniature life support system that you have to attach to your body by plunging a thick needle under your skin every three days. It hangs off you and cries out “Don’t forget! You have diabetes!” All day and night. Sure, it makes life better and you can now get them in colors but trust me: there is not a person alive on an insulin pump who would rather they not need it. Deborah and her son are not trying to pull one over on you, Mass Health.
There are some things Deborah can do right now. She can lie and say her son has huge blood sugar swings or severe lows. But Deborah is a firm believer in honesty. I respect that (even if I secretly wish she’d just tell the lie and get the pump her son deserves). She could run him high for a couple of months and “qualify,” but . . . that’s just wrong.
So here is what I hope: I hope the Diabetes On Line Community will come alive and take action on this. Share this blog. Comment on it. Copy and paste it to two places: The facebook wall of Senate President Therese Murray and the facebook page of Mass Governor Deval Patrick. Both need to think hard about this issue and demand immediate action. Pumps should not be for the chosen few. And common sense tells us: better tools will mean less insurance costs later when complications are avoided. I hope you will comment on the blog site with your support and perhaps a word on how pumps have helped you or your child. Let them hear from thousands. Make them understand.
Let’s help Deborah and her son. And when we help them, we’ll ensure that no other hard-working determined parent with a little less luck and fewer resources than some of us will ever have to feel defeated again.