DALLAS — Texas became the 19th state to sign legislation to lower insulin costs, enacting a co-pay cap at $25 for insured individuals.
Life-changing bipartisan bills for Texans with diabetes, SB 827, which limits cost-sharing of insulin to $25 for a 30 supply, and HB 18, which will establish a prescription drug savings program for certain uninsured people, were signed into law by Gov. Greg Abbott in September. The legislation brings financial relief to diabetics. But even with the $25 cap and a discount program, those managing their diabetes still bear the financial burden of the medical supplies necessary to keep it in check.
According to a 2020 JAMA study, Type 1 diabetes-related supplies can cost on average $2,500 per year. The study also found while insulin is a substantial cost for some, it accounted for just 18% of all out-of-pocket spending.
Collin County resident Tim Cusack says in order to track sugar levels in his blood throughout the day, he uses a continuous glucose monitoring system by Medtronic which would cost him $17,000 without insurance. Other medical goods he uses to manage his diabetes are things like his traditional blood glucose meter, test strips, needles and insulin syringes.
“They lowered the price of [insulin], which is great. I don't want to diss that they did that, I'm really glad they did that,” Cusack said. "But most insurance considers these supplies to be durable medical goods and they don't consider them to be life saving. I disagree. Obviously. Because it helps me manage things in a much more granular way. I can really focus in on the important thing and get my overall blood sugar lower."
Cusack was diagnosed with Type 1 diabetes in 2006 after being misdiagnosed as Type 2. While he has insurance and is “fortunate” enough to bear the burden of costs incurred managing diabetes, he’s concerned about those who can’t.
"The beauty of Type 2 diabetes is it's manageable, you can lower—to control it [with]diet and exercise, you don't necessarily need all [these supplies] to do it. But if you're Type 1, you're on the hook, you're going to be doing this eventually in some way form or fashion,” Cusack said. "The people who are left out are the people who most need it, the ones who are marginalized are the ones who need the most help. There are a lot of people who are not getting the proper care. They're barely getting any insulin at all or they're skimping on their insulin and make every drop of this count. This is like liquid gold to somebody that's uninsured."
Cusack said because things like test strips, which are one-time-use only and needed multiple times a day, could be costly for some, people may not be quick to scientifically test their sugar levels and just go by how they feel.
"They meter out a small amount of care for themselves across a period of time. So they might not test as often as they should. They may test once a day and say ‘well I know how I feel, I feel okay, I'm good.’ Well the problem is, you can lose your insulin sensitivity so you don't know that you're high or low or you're not sure where you stand,” Cusack said. "If you scrimp on that, what can happen is high blood sugar can lead to a wide variety of conditions, heart conditions, you can get external neuropathy which is where you lose sensation your nerves or your feet, your hands, it can affect your eyes, it can affect your other organs, kidneys, heart, you name it."
Tim’s wife Beth Cusack says for the most part, they’ve got his management down but there are still some scary moments she doesn’t want anyone to face because they’re not taking adequate care of themselves.
"I feel like I support him, but he really has taken responsibility for managing this disease and I feel very fortunate and proud of him for doing that,” Beth Cusack said. “One of the scary times is when he wakes up at night and he's like, ‘I can tell I am low right now, I can tell my sugar is low.’ So he will get up and have to take care of that. And I am glad we've got that pretty well managed with the system. I just don't want to see other families go through the fear of the lows. The lows to me are the scariest because that can lead to unconsciousness, coma or death. People should not be facing that kind of thing with not being able to access monitoring with the test strips."
Overall, the Cusacks are happy to see these cost saving measures in place, but in the future, want to see legislation to lower the cost of effectively managing Type 1 diabetes.
"Diabetes care is a whole range of things, and insulin is just like one of those things,” Tim Cusack said. "Work with the companies that produce, the companies that distribute, and the companies that cover to come up with better plans. Don't try to legislate in the absence of company controls because the companies are the ones that are driving the economics of it. Helping them and getting them to help you and making them help you through sensible controls and compromises are how we get things done.”
If you are struggling to pay for insulin or know someone who is, the American Diabetes Association has resources to help – visit InsulinHelp.org.