DBlogWeek 2017 #2- The cost of a chronic illness

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?  (This topic was inspired by suggestions from Rick and Jen.)

Cost doesn’t impact my diabetes care much right now, but it has in the past, and I fear that it may again in the future.

Flashback: Before the Affordable Care Act (also known as “Obamacare”) took effect.

I was a self-employed IT consultant. Work wasn’t steady, but I did some digging to see what my insurance options were for a person with T1D looking to buy an individual plan. The conclusion I reached was: I was best served paying cash for doctor’s appointments. I could get lab tests done by ordering them in advance online for a decent discount. I could survive on Multiple Daily Injections (MDI) of insulin. Store-brand meters and test strips were adequate. All of that was cheaper than the $3000/mo premium that I was quoted from the ONE company that would even offer me an insurance policy.

Flash Forward: Today

I happily pay full price for an individual plan (~$420/mo for a “platinum” plan), and I’m grateful that I have the opportunity to purchase coverage at a reasonable price. I’m rocking a pump (Tandem t:slim X2) and a CGM (Dexcom G5). As a result, my glycemic control is better now that it has ever been. I’m fortunate to live in a state that has embraced the ACA (California). California expanded Medicaid, set up an exchange, and engaged in LOTS of outreach to get consumers to use it. As a result, we have a robust market with 7 different insurers offering policies in my county.

Unfortunately, the sad truth is that in much of the US, politicians at the state level have done everything possible to obstruct, hamper, and sabotage the ACA. It doesn’t fit their ideology, so they WANT it to fail. And by God, they will do everything in their power to make sure that it does. Even more surprising is that the tactic seems to be working. Citizens in states where local politicians have poured sugar into the gas tank and slashed the tires of the car that is affordable health insurance coverage aren’t blaming the people that wrecked the car- they’re instead blaming the person that built the car in the first place.

BUT

I’m one of the lucky ones. I have insurance that meets my needs. There are still way too many (and let’s be honest, even ONE is too many) people with diabetes in the US that cannot find affordable insurance, and even if they can afford the policy premiums, are subject to deductibles and other cost barriers that make optimal glycemic control unattainable. Insulin should be cheap. If you’re a big insurance company, you can buy it for about $30 per vial. Unfortunately, middlemen (*cough*, PBMs, *cough*) insist on HUGE discounts off the “list price” so that they can claim savings for the insurance companies that contract with them. The “solution” has been to raise the “list price” over and over so that the perceived “discount” gets larger and larger for the PBMs. The end result is that people who have yet to meet a deductible and people without insurance wind up paying TEN TIMES the wholesale cost for a medication upon which they depend to stay alive.

Access to devices is another issue. CGM is a game changer, allowing people with diabetes to see what’s happening inside their bodies almost minute-by-minute. Yes, it costs money, but insurers and payers need to start looking beyond the immediate costs, and instead consider things like CGMs, pumps, and even adequate supplies of test strips to be an upfront investment that prevents much larger costs down the road. Dialysis is REALLY expensive. So are amputations. So are kidney transplants. Looking shorter-term, how many ambulance rides and ER visits (due to severe hypoglycemia) or days in the ICU (due to diabetic ketoacidosis) need to be prevented for the cost of a CGM to become relatively cheap?

Also, consider this: The costs of diabetes can’t just be measured in dollars. Diabetes extracts a cost in time and effort. For people diagnosed as children, it can rob them of their childhoods. And, in the long term, sub-optimal control can extract its own cost in toes, feet, legs, kidneys, and eyes. These costs are by far the largest ones borne by our brothers and sisters with diabetes.