My son’s pancreas is lazy. One year ago — just shy of his 17th birthday — it decided to fizzle out. This means that my son’s pancreas produces little insulin. Once he’s out of this “honeymoon” phase, his pancreas will secrete no insulin.
In medical terms, my son’s lazy pancreas is called type one diabetes (T1D). TID is an autoimmune disease in which insulin-producing beta cells in the pancreas are mistakenly destroyed by the body’s immune system. So, people with T1D are dependent on injected or pumped insulin to survive. Not the most relaxing and carefree way to live.
If you’re going to be hit with this terrible disease, now seems like a good time to get it. After months of finger pricks all day and night to test blood sugars, we got our son the most up-to-date Continuous Glucose Monitor (CGM) that checks his blood sugar at 5 min intervals, 288 times per day. Both my husband and I — and our docs — can follow him and get real time updates whether he’s at work, school, sleeping, or buying yet another pair of overpriced sneakers. For emergencies, we’ve got baqsimi on board, a brand new pre-measured and ready to use dry nasal spray in the event my son is unable to swallow liquid or food because of hypoglycemia-related symptoms (severe low blood sugar), including severe drowsiness, unconsciousness, or seizures. This is quite the relief for my younger son, who wasn’t keen on the possibility of mixing and injecting his brother with the previous iteration of this emergency treatment.
After a year of injecting insulin, my son now has an insulin pump. Why? Because pumps offer benefits you can’t always get from injections: fewer needle pricks for starters. Every time you eat, and sometimes in between, you need an insulin injection. Over days, weeks, months, etc. that’s a lot of pricks. With a pump, and my son’s rad pump specifically, it’s a prick every three days. The pump provides continuous microdoses of insulin in the “background” and enables you to add more insulin around meals. The dosing is more precise and can allow for more time “in range” — that’s diabetes speak for within what is my son’s blood sugar range of 70–180. It’s tubeless, discreet, and pretty sweet. You fill it with insulin every three days, stick it on your body, and control it through a blackberry-type device. Their new touchscreen system is out, which looks more like an iPhone, and the “artificial pancreas” technology for this system isn’t far behind.
And, speaking of an artificial pancreas, the Food and Drug Administration (FDA) recently approved an algorithm that enables an automated insulin delivery system. This means that for the now two insulin pump systems and one CGM approved, the devices can talk to one another, mimicking a pancreas. In Congress, the US House of Representatives just passed HR 3, the Elijah E. Cummings Lower Drug Costs Now Act of 2019, a sweeping measure that would give the secretary of Health and Human Services the authority to directly negotiate with drug companies for up to 250 of the highest-priced drugs — and all insulin — each year.
For a labor intensive disease, and a life threatening one with short term and long-term health consequences, the future could not be brighter.
So, if it’s the best time in history to have T1D, why do I worry? I have good insurance and my son will be able to stay on until he’s 26. We have time, right? But, we don’t. The attacks on our nation’s health care law, the Affordable Care Act (ACA), continue unabated. As my son’s health care odyssey began, so too did the ACA’s most recent adventures. The day of my son’s TID diagnosis, Judge Reed O’Connor of the Northern District of Texas ruled that the ACA was unconstitutional. And, a year later, the Court of Appeals for the Fifth Circuit ruled that one key element of the law — requiring people to have insurance — was unconstitutional. Adding insult to injury, they sent the rest of the case back to Judge O’Connor for essentially a “do-over.” I’m no legal scholar, but giving the case back to a judge who previously ruled to strike down the law seems like a terrible idea. Close to twenty million Americans could lose their health coverage, more than 50 million people with pre-existing medical conditions could again be denied health insurance, and insurers would no longer have to cover people up to age 26 under their parents’ plans. Not to mention the fact that the chaos caused by the ongoing court case could hike premiums, limit plan options, and harm consumers — many of whom only have health coverage because of the ACA.
How does the ruling impact my son’s lazy pancreas? It doesn’t — for now. The ACA still stands. And, more T1D groundbreaking advances are around the corner — including not just how to live better with the disease, but what causes it, who is at risk, and how to prevent the onset — driven by so many dedicated to a healthier world. However, these advances fall flat if the ACA is overturned and millions lose their health insurance.
It’s not just my son’s CGM keeping me up at night these days.