The high cost of staying alive

Although it pains me to admit it, the truth is that I’m part of the horde of Americans who are very poor health care consumers.

My husband is a pump-carrying Type 1 diabetic, which was previously known as Juvenile Diabetes because it typically manifests in children and young adults. His body produces no insulin, the hormone that moves glucose from the bloodstream to the rest of the body.

Type 1 is the rarest form of diabetes — only about 5 percent of diabetics in the U.S. are Type 1 — and it is, in a word, nasty. He must constantly monitor and regulate his blood sugar levels to stave off complications like nerve damage, kidney disease, blindness, poor blood flow and more. Even so, there’s no guarantee such complications won’t appear in the future.

insulin-1_the-gazetteWithout either the pump or injections to provide the insulin he needs, the disease would kill him.

And although he takes good care of himself, most of my sleepless nights can be attributed to worry about natural disasters or a host of other unknowns that would prevent us from accessing bottles of insulin. Such worries have manifested over the past few weeks as we’ve battled with our insurance company over access to insulin.

The insurance company took an average of how much insulin he’s using per month — roughly 1.25 bottles — and decided that’s what they would authorize. There are two problems. First, the amount of insulin varies based on things like activity level and consumed foods. Second, consumers can’t purchase one-quarter of a bottle of insulin. And, instead of bumping the authorization to two bottles, insurance reduced it to one, which isn’t enough.

We could, of course, purchase more, but it would be without the benefit of a copay from the insurance company.

Like most Americans with medical and prescription insurance, we’d been relatively shielded from the actual cost of such things. Our pocketbook is budgeted for the expense of copays, not for purchasing drugs or services at the cost negotiated by our insurance company or, worst yet, wholesale.

Because of this, we hadn’t noticed that the actual cost of insulin — what a person would pay if she walked into a pharmacy without insurance — had skyrocketed.

A 10 mL bottle of highly concentrated Humulin U-500 insulin cost about $220 in 2007. By June 2014, cost rose to $1,200. That same year, insulin became a $24 billion global industry — one that’s supposed to top $48 billion by 2020.

There are other brands and concentrations, but they’ve all experienced price increases, according to a 2015 study by Dr. Jing Luo at Boston’s Brigham and Women’s Hospital. Some like Humulin R, Levemir and Lantus increased in wholesale price by more than 160 percent over a five-year period ending in 2014. And patients that choose analog (Humalog, Novolog, Lantus) over human insulin formulas can experience cost that is seven to eight times more expensive.

Long-lasting insulins, which are more costly, are generally preferred and needed by those who cannot afford the steep cost of insulin pumps, which run several thousand dollars. And there’s also the expense of syringes, blood test strips and more.

Luo and his team found that between 1991 and 2014, the amount Medicaid paid pharmacies per insulin unit increased by at least $6.86. In some cases it increased by $15.38 per unit.

And, yes, some pharmacies have tried to step up and take some of the pressure off, but that’s caused problems with insurance. If a person with Type 1 chooses to purchase heavily discounted insulin direct from a pharmacy, the insurance company may decide that the person is no longer managing their diabetes and subsequently refuse to authorize other expenses like test strips, glucose monitors or pump supplies.

Maybe all of this would make sense if there had been some major scientific advances in the production of insulin, but there haven’t. Since the 1980s cost of production hasn’t increased and there seems to be no logical reason for the pharmaceutical companies to have made massive increases.

For now, our family has been able to find a compromise that doesn’t jeopardize my husband’s health, although it won’t improve the local economy. He now receives a multi-month supply of insulin from a mail-order pharmacy run by the insurance company. I can go back to worrying about natural disasters instead of insurance battles.

I’ll also be paying more attention to the cost savings we receive simply by being on an insurance plan, and the drug price increases hidden under copays.

EpiPens and manufacturer Pfizer may own the headlines, but they definitely have not cornered the market on inflating pharmaceutical costs for no good reason.

This column by Lynda Waddington originally published in The Gazette on October 9, 2016. Photo credits: The Gazette