When Lacy Mason was in college and graduate school pursuing a degree in physical therapy, there were months when she could not come up with the $800 she needed to pay for her insulin. So she would ration her doses or purchase insulin on the black market when times were tough.
"It's really hard for me to talk about, but it's important to talk about it," she said recently. "Type 1 diabetics can only go about two to three days without insulin before they die; it is literally life or death."
Mason, who lives in East Atlanta, currently is participating in a treatment plan that is affordable under her employer-sponsored health insurance at about $35 a month. And she works at a senior living facility where some of her patients have saved money by enrolling in Medicare plans where insulin copays are capped at $35.
That is why she supports legislation sponsored by Georgia U.S. Sen. Raphael Warnock to implement the same $35 cap for copays under all insurance types.
The average cost of insulin doubled from 2012 to 2016 and continues to rise, although prices vary according to the type of drug prescribed. Twenty states and the District of Columbia, but not Georgia, already have laws in place that limit out-of-pocket insulin costs.
About 1 in every 10 Americans has diabetes, or about 37 million people. It is the eighth-leading cause of death in the U.S., according to the U.S. Centers for Disease Control and Prevention. Patients with diabetes are also at higher risk for blindness, kidney failure, heart disease, stroke and loss of limbs.
This insulin-cap language was initially contained in the wide-ranging Build Back Better social spending and climate change bill that stalled due to opposition from Republicans and two moderate Democratic senators, West Virginia's Joe Manchin and Arizona's Kyrsten Sinema.
Now, Warnock has introduced it as a stand-alone bill. The proposal has the support of Democratic leaders in Congress, as well as the White House, although conversations continue about how to get it passed into law.
Warnock's bill doesn't have any Republican co-sponsors, but Kaiser Health News reported that at least 20 GOP senators have in the past said they support controlling insulin costs.
Warnock's bill would only affect people who are insured, which has led to some criticism about its limits. He said it is just one proposal he has offered to lower health care costs; Warnock is also a champion of Medicaid expansion to lower the number of uninsured Americans.
"I'm much more wed to outcomes than I am to process," the freshman Democrat from Atlanta said. "I think that if you're too focused on the process, then you might fail to see that there's another path, and so I am open to how we get it done. But I'm heartened by what I'm seeing from my colleagues on both sides of the aisle. Diabetes is not a partisan issue."
Warnock said the statistics show the problem is more acute in conservative states such as Georgia, where he estimates his bill would lower insulin costs for over 1 million patients, or 12% of the adult population.
He said he has seen the debilitating effects of diabetes while pastoring to people in hospitals after emergencies and amputations.
"All of these are real human costs for the patient and financial costs to our overall health care ecosystem," he said. "So to cap the costs of insulin is a win-win. It's a win for the people of Georgia, for patients, for the health care system and for the economy."
President Joe Biden endorsed the insulin legislation during his State of the Union address earlier this month. He referred to one of his guests in the gallery, 13-year-old Joshua Davis from Virginia, who has diabetes. So does Joshua's father, and the cost of insulin for both has strained the household budget.
"For Joshua and 200,000 other young people with Type 1 diabetes, let's cap the cost of insulin at $35 a month so everyone can afford it," Biden said to applause. "And drug companies will do very, very well."
U.S. Rep. Lucy McBath of Marietta, who has filed the House companion bill to Warnock's proposal, said Biden's speech highlighted the urgency of passing the legislation.
"For over 100 years, we've been able to save lives with insulin, and for over 100 years it has remained the most effective treatment," the Democrat said. "And over 100 years later, some estimates state that diabetics spend around $6,000 a year on insulin alone. That is unconscionable."
Atlanta endocrinologist Kate Wheeler said treating her patients who need insulin requires thinking about more than which medicine best fits their needs.
She searches databases to determine how much their insurance will pay and, if it's not affordable, what replacements can still get the job done but for fewer dollars. That also means helping patients figure out their out-of-pocket costs, which can be substantial if they were signed up for high-deductible plans.
"We are forever spending our time and energy, their time and energy and their resources making decisions based on what they can get, not what they should and need to get from a practical and financial standpoint," she said.
"In the very basic thing," Wheeler said, "this would allow us to spend our time with a patient really focusing on what we should be focusing on and then in a more general sense they would actually have the medicine that allows them to achieve the better health outcomes they are trying to get."
