Sen. Brandon Smith, R-Hazard, asking about manufacturer coupons for insulin
FRANKFORT, KY (August 22, 2019) – Ashamed, Angie Summers suffered in silence as she self-rationed her insulin. She couldn’t afford the amount prescribed to control her Type 2 diabetes – despite having employer-provided health insurance.
First, a condition called neuropathy caused stinging, burning and stabbing pains in Summers’ feet. That led to a complication called Charcot, where the bones and joints of her right foot started breaking. Ultimately, she had to have her right leg amputated just below the knee.
Now she has gastroparesis, where her stomach cannot empty itself of food in a normal fashion.
“I will not be silent anymore because other people need to know that they don’t have to be silent either,” Summers said while testifying before Wednesday's meeting of the Interim Joint Committee on Banking and Insurance. “Diabetes, whether Type 1 or Type 2, should not be a death sentence.”
Gary Dougherty of the American Diabetes Association (ADA) testified that Summers isn’t alone in her struggle.
“Using less than the prescribed amount of insulin can result in uncontrolled glucose levels which can lead to damage to one’s eyes, kidneys and heart,” he said. “Ultimately, without enough insulin, diabetic ketoacidosis can occur. If untreated, it can lead to diabetic coma – or even death.”
In Kentucky 567,000 residents, or just over 15 percent of the state’s adult population, have diabetes, Dougherty said. Of those, an estimated 108,000 have diabetes but don’t know it. Another 1.16 million, or 35 percent of the adult population, have prediabetes. He added that every year an estimated 130,000 Kentuckians are diagnosed with diabetes.
People with diabetes have medical expenses approximately 2.3 times higher than those who do not have diabetes, Dougherty said. In Kentucky, the total direct medical expense for diagnosed diabetes was estimated at 3.6 billion in 2017. Another 1.6 billion was spent on indirect costs from lost productivity due to diabetes.
Dougherty said the problem had gotten so acute that states started taking action in place of Congress.
During the General Assembly’s last regular session, Rep. Danny Bentley, R-Russell, introduced House Bill 502 to address the rising price in insulin. Dougherty said the ADA supported provisions of the bill concerning price transparency from drug manufacturers and third-party administrators of prescription drug programs, commonly referred to as PBMs. The ADA, however, recommended additional provisions be added to include other key players in the supply chain including health insurers and pharmacies.
In May, Colorado became the first state to cap copays for insulin at $100 per month, Dougherty said. Colorado’s law also directed the state’s attorney general to investigate insulin pricing.
In June, Bentley prefiled legislation, known as Bill Request 105, that is similar to the Colorado law. Dougherty said it would cap the insulin copay at $100 per month but not instruct Kentucky’s attorney general to investigate insulin pricing.
Dougherty said the ADA was aware of similarly proposed legislation in 17 states including Illinois, Maryland, Michigan, New York and Wisconsin.
Stewart Perry of the National Diabetes Volunteer Leadership Council testified that he would like Kentucky to do more than pass transparency laws.
“If you pass a bill for transparency and all it does is tell you who you think might be hosing you, it makes no sense,” he said. “If you pass a bill that is going to make meaningful changes to the supply chain, it does.
“If we are going to pass transparency legislation, let’s figure out how it is going to lower consumer costs.”
Sen. Christian McDaniel, R-Taylor Mill, expressed concern the Colorado law shifted the cost burden to that state’s taxpayers without addressing rising prices of insulin. Dougherty responded that as Colorado’s law is implemented, advocates like him could study the results to draft better legislation in other states like Kentucky.
“It’s not a perfect solution,” Dougherty said of the Colorado law. “It is a response to the issue, and I think it is probably an evolving response.”
Sen. Brandon Smith, R-Hazard, asked if manufacturer’s coupons were available for insulin. Dougherty said the problem was the discounts don't count towards people’s deductible, copay or coinsurance.
Sen. Reginald Thomas, D-Lexington, said he was considering legislation that would allow people to count the costs of services they receive at community health centers to go toward their health care deductible.
No one representing drug manufacturers, PBMs or health insurers testified before the committee.
Summers finished her testimony with this statement to committee members:
“More than 100 million people are living with the effects of diabetes. You know someone who has diabetes. If you are smart ... you are praying they can afford their insulin because if they can’t they are not going to ask for help. They don’t want to be a burden because it is not one month. It is every month. It is not one time. It is the rest of their lives.”