We’re two weeks into a new Congress that smells blood in the water.  Other than a flurry of legislation designed to limit transparency and ethics oversight (always a great sign when that’s their first thought when they arrive in Washington), the major focus has been the dismantlement of Obamacare (the Affordable Care Act, ACA).  What is abundantly clear is that those voting to “repeal and replace” the ACA, without having ANY idea of what they might eventually replace it with, are oblivious to the impacts of the law on real Americans.  What follows is a NOT so hypothetical story of three children, “Alex”, “Olivia”, and “Nate”, and what health care policy in the United States means to them.

Alex, Olivia, and Nate are all young teenagers or pre-teens.  Each has Type-1 diabetes, the auto-immune version where their own misguided immune system has attacked and destroyed the islet cells in their pancreas’ that make insulin.  For the rest of their lives, they will be dependent upon insulin injections.  It’s a life fraught with risk. If you don’t control your blood sugars well, you’ll have frequent hyperglycemia events (high blood sugar). Over time, that will contribute to kidney disease, eye disease, cardio-pulmonary disease, and peripheral nerve damage. If you’re extremely vigilant and try to control your blood sugars very tightly, you’re more likely to have hypoglycemic events (low blood sugar), a dangerous condition that can cause seizure, coma, and even death.  Long-term blood sugar control is measured with a patient’s “A1C”, a hemoglobin-based measure from your blood.  A “normal” A1C is less than 6.5. The higher a diabetic’s A1C is, the worse their long-term blood sugar control, and the higher their risk for complications.

There’s little doubt the ACA is a god-send to Type-1 diabetics like these Alex, Olivia, and Nate.  No longer can they be refused insurance coverage for their pre-existing condition.  Diabetes is an expensive, life-long disease, but thanks to the ACA, they will no longer be subject to lifetime maximum payouts from insurance companies.  For parents helping them transition to an adult life and the responsibility for their own health insurance, the ACA allows parents to cover children on their insurance until they turn 26.  Things are much better with the ACA, but even with the ACA, we’ve got a long way to go in providing equitable health care in the United States.  With that as background, here is the not-so-hypothetical story of Alex, Olivia, and Nate and their battle with Type-1 diabetes…and the American health care system.

“Alex”

Alex is a young teenager who was diagnosed with Type-1 diabetes at a very young age.  His family would be considered  upper-middle class. Alex’s family has a very good, comprehensive health care plan, with insurance provided through one of Alex’s parents. Alex has had access to some of the best care a young diabetic can have. For over 10 years, Alex has had an insulin pump, a small device that holds a reservoir of insulin.  His pump automatically provides a steady stream of insulin all day long (the “basal” insulin), just as the body normally does, to try to keep blood sugars stable. His pump also makes it easy to administer insulin at meals.  He simply estimates how many carbs he’s eating, enters that number in the pump, and the pump provides the proper amount of insulin required to process the sugars in that meal. Alex checks his blood sugar very often (8-10 times a day), but was still occasionally experiencing both hyperglycemic and hypoglycemic events.  In addition to his pump, his family pursued a “continuous glucose sensor” (CGM), another medical device that automatically checks his blood sugars every 5 minutes.  The CGM even has a cell phone app, where his parents are alerted on their cell phones if his blood sugars need attention. He no longer faces the dangerous “nighttime lows”, a hypoglycemic event that may occur at night when a patient is asleep and less able to respond. If Alex’s blood sugars start to drop anywhere close to dangerous levels, an alarm will alert both him and his parents that action is needed.  Alex’s A1C levels have typically been right around 7.0, just a bit above that of a “normal” person.  With the new CGM, it’s likely that will go down even further.  Alex’s care is expensive.  The insulin pump and the CGM both costs thousands of dollars, as do the yearly supplies that support those devices.  Along with the costs of insulin, doctor visits each month, and other supplies, Alex’s health care costs without insurance would be in the 10s of thousands of dollars per year.  Even with what’s considered quite good insurance, his parents pay a lot out of pocket each year for the pump, CGM, and supplies. They can afford it, however, and Alex’s long-term prognosis and risk of complications is much lower than Olivia’s or Nate’s.

“Olivia”

Olivia is a pre-teen who has had diabetes for about 5 years.  Her family would be considered middle-class, perhaps lower middle class. Olivia’s family has a health care option through a parent’s employer, with coverage that isn’t nearly as good as what is provided by Alex’s insurance. Olivia’s family would like a better insurance plan, but their income is high enough that they’re not eligible for subsidies under the ACA that might enable them to “shop around” and find better insurance.  Olivia’s insurer covers only part of the costs of an insulin pump, and does not cover costs for a CGM.  Olivia’s family cannot afford the out-of-pocket costs that would be required to get an insulin pump, so Olivia does not have an insulin pump, or a CGM.  Her insulin control relies on frequent injections, with a daily “long-acting” insulin that is meant to mimic the basal insulin (the steady, day-long drip) provided by Alex’s pump, and “short-acting” insulin that is given with every meal.  Olivia doesn’t like needles, but as a young diabetic, she’s learned to tolerate them. Olivia knows Alex, and marvels at his pump, which frees Alex from the 4-6 daily injections that Olivia gets.  Olivia checks her blood sugar as frequently as Alex, 8-10 times per day, which helps keep her blood sugars under control.  She can respond when blood sugars are low or high, but it means another injection (for high blood sugars).  Without a CGM, she’s more subject to unnoticed hypoglycemic or hyperglycemic events.  Unlike Alex, who “feels” when his blood sugar is low, Olivia has no such physical feelings or warning signs when her blood sugars go low.  She recently was hospitalized after a severe, nighttime hypoglycemic event, when extremely low blood sugar results in seizure and a short period of unconciousness.  With her diligence in checking blood sugars, however, those events are minimized. Her A1C is significantly higher than Alex’s, usually around 8.0 to 8.5.  Compared to Alex, she’s thus not only at risk of unnoticed high or low blood sugar events, she’s also more likely to develop longer-term complications such as heart disease, kidney failure, or eye disease.

“Nate”

Nate is a teenager who was diagnosed with diabetes about 10 years ago.  He lives in a single-family home, a good home with a very loving mother, but paying the bills is a struggle.  The only health insurance available to Nate’s family prior to the ACA was a “catastrophic care” policy with very high deductibles and much poorer coverage than either Alex or Olivia receive.   After Nate was diagnosed, the economic struggles meant pinching pennies on health care. It even meant pinching pennies on the administration of insulin. At difficult times, Nate’s family would avoid carbohydrate-laden meals, in order to save money on the amount of insulin needed to treat Nate. Visits to the endocrinologist were few and far between, as Nate’s mother couldn’t afford them.  Nate’s blood sugar control was very poor prior to the ACA, with A1C’s typically over 10.  Under the ACA, subsidies are available, including both tax credits and cost sharing subsidies, that ensure a plan on the ACA marketplace can’t cost more than 9.5% of a family’s income. After the ACA, Nate’s mother enrolled in a marketplace plan and obtained a health care plan that was much better than the poor health care option provided through her employer.  However, Nate’s insurance is similar to Olivia’s, in that only partial costs of an insulin pump would be covered, and a CGM is not covered.  Nate’s mother cannot come close to paying the out-of-pocket costs that would be required for an insulin pump. Nate relies on shots much like Olivia does.  Nate’s mother is extremely thankful for the availability of ACA coverage, as without it, even the cost of insulin would have been very difficult for her to pay under her employer’s poor, catastrophic coverage insurance.  However, the family still struggles with everyday costs, including costs of health care. With the only available, affordable ACA plan, coverage is worse than either Olivia’s or Alex’s.  Nate’s situation has improved, but his family is still forced to make extremely difficult healthcare decisions, regarding both health care and other, every-day expenses.  With another sibling with asthma and other problems, covering health expenses is difficult even with the ACA and tax credits.  Visits to the doctor are fewer for Nate’s family than for Olivia’s and Alex’s. Blood sugar control has improved for Nate with the better insurance from the ACA, particularly as the family doesn’t feel the need to “scrimp” on insulin, yet Nate still has A1C levels that approach 10 at times.  Nate is at substantially higher risk of long-term complications than either Alex or Olivia.

Comparing Alex, Olivia, and Nate

Alex > Olivia > Nate.  That’s the situation in today’s health care system, where your level of care is directly related to your ability to pay.  With Type-1 diabetes, blood sugar control is LIFE.  There are tools available that assist a Type-1 diabetic in maintaining blood sugar control, but those tools are of no use if a family can’t afford them.

In all likelihood…Alex will outlive Olivia.  Olivia will outlive Nate.  It’s as simple as that, when blood sugar control is the key to a long, happy life for a diabetic.  Particularly a type-1.  It has NOTHING to do with the love of a family, or the desire to keep blood sugars under control.  The parents of Alex, Olivia, and Nate all love their children very much, and would do anything to keep them as healthy as possible.  It simply boils down to economics. Even if insurance provides some access to advanced treatment options, that’s useless if the family can’t afford co-payments or other fees required to get those advanced options.

The ACA is far from perfect, but also a much, much better situation than we had prior to the ACA. The ACA is a step in the right direction, but more is needed. Instead, we’re heading backwards.  The split between the “haves” and the “have nots” has never been more evident in the United States, and as the not-so-hypothetical case of Alex, Olivia, and Nate shows, that divide is also still clearly evident in how we dispense our health care.