Kentucky legislators have pre-filed bills to cap the cost of insulin for some; advocate describes the ‘real cost’ of diabetes

Lisa Middleton, patient advocate
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By Melissa Patrick
Kentucky Health News

While legislators and health advocates work to control the surging cost of insulin, a mother with two children and a husband with Type I diabetes points out that the cost of diabetes care far exceeds the actual cost of the drug — and that the latest, most efficient life-saving technologies and treatments should not be considered a luxury.

Insulin pumps and continuous glucose monitors aren’t luxuries, Lisa Middleton, an advocate for patients and affordable health care, said at the annual Health Watch USA 2019 Patient Safety Conference Oct. 17 in Lexington.

Insulin pumps are small, computerized devices that deliver insulin throughout the day, or variable amounts when a meal is eaten, similar to the way the body delivers insulin when it’s working properly.

Continuous glucose monitors track glucose levels throughout the day and night, and send alerts to designated cell phones when a person’s blood sugar fluctuates, allowing for immediate treatment.

“Things like insulin pumps and things like CGMs shouldn’t be considered a luxury,” Middleton said. “They should be considered the standard and therefore the standard needs to change. And the same goes for insulin.”

Middleton offered an example of how a continuous glucose monitor recently alerted her when her daughter’s blood sugar dropped to around 20 or 30, which is dangerously low. She said normal blood sugar levels for her family are 80 to 150.

“So, in my opinion, this right here is the absolute most important thing other than insulin,” she said.

What are the “real costs”?

Middleton said that with insurance, her family paid nearly $8,000 out of pocket for one insulin pump, which has a retail cost upwards of $15,000. She said glucose monitors run around $1,800 with insurance, and that require a sensor that has to be replaced every 10 to 14 days and costs about $80. And there are other costs.

Middleton showed receipts from one family that pays $1,092 a month for insulin, and said there have been times when her family has had to pay around $1,300 a month. “And it’s non-negotiable,” she said, “so you do whatever you have to to make that happen.”

She said insulin pens, which make measuring and delivering insulin easier, cost a maximum of $73 in other countries, but $700 in the United States, and around $400 with insurance.

In 2016, Americans with Type 1 diabetes spent $5,705 on insulin, according to an analysis of health-care claim data by the Healthcare Cost Institute.

Middleton provided a long list of supplies that make treatment expensive, such as blood-glucose meters, test strips, lancets and syringes. She pointed out a life-saving medication called glucagon, which is used when a person’s blood glucose drops dangerously low, that comes in a one-time use emergency kit that in the past has cost her $300 — with insurance.

She also pointed to a page-long list of other costs to consider, such as more expensive food to accommodate a person’s blood sugar fluctuation, the cost of transportation and time-off-work for doctor’s appointments, and the ongoing costs of tapes, adhesives and ointments to name a few.

Dealing with these financial barriers

High costs associated with a Type I diabetes diagnosis can lead to medical bankruptcy, significant credit-card debt or even death, Middleton said. She listed the names of 11 people who have died since 2017 because they couldn’t afford their insulin.

To overcome some of the financial barriers, some people are traveling to other countries to get their insulin, she said. Some are moving to other states that offer special insurance coverage for kids with Type I diabetes, and several other states are working to cap the co-payment, as Colorado has.

She said many ration their doses, some eliminate the use of insulin pumps and continuous monitors, and some use equipment longer than it is intended. Some use cheap Walmart insulin, which she said is often not preferable, but is all many can afford.

And some who need the drug have taken to trading their insulin and other needed supplies on social media, Bailey Loosemore reports for the Louisville Courier Journal.

Louisville Courier-Journal screenshot from Facebook

“High deductibles, lack of insurance or inadequate insurance have forced people to pay more for their prescriptions,” Loosemore writes. And when they can’t afford the life-saving drug Marybeth Lacy of Morgan County, who has lived with Type I diabetes for 43 years, and others told Loosemore they have “hoarded insulin, skipped doses and even traded medications with friends or on social media,” which Loosemore notes is “technically illegal.”

Lacy told Loosemore that she is grateful that her insurance covers all the cost of her prescribed insulin, which would otherwise cost more than $1,000 a month, but it’s not the type of insulin that works best for her. Sometimes, she said, the insulin that is not covered and costs her more than $300 for a two-week supply, is the only drug that will work to control her blood sugar.

In her closing PowerPoint slides, Middleton said that she has been told that some will suggest that people with diabetes need to switch to a more affordable “multiple daily injection” therapy, which requires the person to self-inject insulin several times a day as well as constantly self-monitor their blood sugar.

To this suggestion, they said “I should not have to choose between being financially stable and staying out of debt and having the best treatment for my diabetes. The standard of care for diabetes needs to be updated so that insulin pumps and CGM are affordable and available to everyone. The long term benefits to better coverage for the technology will drastically reduce the financial impact of treating complications that arise from improperly managed diabetes throughout life.”

What’s Kentucky doing?

Two Kentucky legislators are working to fix that. Rep. Danny Bentley, a Republican from Russell who is a pharmacist, pre-filed a bill to cap the cost-sharing price, or co-pay, of insulin at $100 for a 30-day-supply; Sen. Phillip Wheeler, a Pikeville Republican, has pre-filed a bill in the Senate. So far, Colorado is the only state to have passed such a bill; it will go into effect in January.

Wheeler’s bill would also require insulin manufacturers and wholesale distributors to issue all customers a rebate for expenses over $100.

Angela Lautner, founder of the advocacy group Kentucky Insulin 4 All, told Loosemore that such a cap could benefit people who receive insurance through state insurance plans or the state-federal marketplace, but it would not help those who are insured through self-funded plans by multi-state employers, because those plans are governed by federal rather than state laws.

During its last session, the legislature passed a Bentley bill to allow pharmacists to dispense insulin and respiratory inhalers in the smallest supply available in an emergency. Kentucky already had a law to allow pharmacists to dispense a 72-hour emergency supply of a prescription medication, but because insulin and most inhalers are not available in doses that small, they couldn’t dispense them.

The law is called Kevin’s Law for Kevin Houdeshell, an Ohio man with diabetes who died after running out of insulin on New Year’s Eve in 2013, despite multiple efforts to reach his doctor to get the refill.