Richmond resident Rebecca Kelly has been living with diabetes since 2000 — almost 21 years.
Like many, she requires insulin and a pump to help her stay alive.
According to Kelly, the past few years have made that more difficult.
After struggling with insurance companies, she and her husband joined Medi-Share, a costing sharing program which does not cover prescription costs. Therefore, a 90-day-supply of her insulin would cost her a total $1,200, or $300 a vial.
One night, she was doing what many who purchase insulin do — taking inventory of her personal medical stock.
“I remember, I will never forget this, I had one vial left,” Kelly began. “I remember thinking, ‘I will be okay, there is enough in the vial that it will get me through until another refill.’ That night, I dropped the vial and it broke, shattering all over the floor. Immediately I began having a panic attack and thought, ‘I don’t have $1,200 right now to buy this medicine.’ I was literally on the floor shaking and crying.”
At that point, she and her husband decided something needed to be done differently. The couple researched different avenues for solutions, and came across individuals who would travel to Canada for more affordable insulin prices.
“We had our passports already, so that wasn’t a big deal and I said, ‘Let’s do this,'” she recalled.
Not knowing how anything would play out, they drove north and arrived at Olde Walkerville Pharmacy in Windsor, Ontario, right across the border.
Here, Kelly did not require a prescription, and could just walk in and tell them how many vials she would like.
“It was just like walking in for a cup of coffee,” she said.
Kelly was able to get eight vials from the pharmacy at a cost of $240 total. Whereas in the states, eight vials would have cost her $2,400.
The couple, with Kelly’s prescriptions and newly acquired stock in tow, arrived back at border patrol where they were questioned on the reason for their visit and how much medication they received.
“I told the man eight and he laughed,” Kelly exclaimed. “I said, ‘Okay, I could have gotten more?'”
He waved them on their way.
The couple made the six-to-eight hour trip to Canada (a total of nearly 16 hours drive time in one day) again for more vials just before the pandemic shut down.
Kelly said they were worried they would not be able to obtain, or afford her insulin in the long run.
She said she entertained the idea of having insulin shipped, but it was too big of a risk as border control can hold any package, for any reason, for up to two weeks’ time. This would be a big issue considering insulin requires refrigeration.
“It could sit there for two weeks and not be refrigerated, and there you are having paid this money and they hold it for two weeks and the odds are you are just kind of playing a game. Are you going to get it or not?” She questioned.
Since the pandemic swept across the United States, travel outside the country has been made practically impossible.
Now, if she wants to travel to Canada, a COVID-19 test must be administered despite vaccination status. Even if the result is negative, individuals are required to stay for two weeks in a government facility at a cost of $2,000.
“Who has an extra two weeks and $2,000? Going there is not an option right now,” she said.
In the interim, Kelly receives a “COVID-coupon” from Eli Lilly, a pharmaceutical company that manufactures her Humalog prescription and it costs her $25 a vial.
However, this coupon expires on December 31, 2021.
With the clock ticking, Kelly has teamed up with other people living with diabetes in the hopes of creating legislation which makes insulin affordable for all.
“You get a coupon for paper towels, not a life-saving medicine,” she said.
Kelly joined T1 International as a chapter co-lead along with Angela Lautner, who got involved through protests at manufacturer Eli Lilly.
Representatives could not give comment about the protests due to being out of the office on “summer shutdown” beginning July 5.
According to Lautner, T1 International believes every person who must inject insulin to survive, must be at every table where the cost of insulin is discussed and where bills are being drafted.
“Instead of saying access to basic insulins marketed over 20 years ago is ‘complicated,’ we bring solutions to the table that may be a combination of bill drafts from other states or our own ideas as patients who struggle with insulin costs, whether insured or uninsured. The cost of insulin isn’t complicated. Three insulin makers set the list price and can choose to lower that price at any time,” she told The Register.
Just this past year, House Bill 95 was approved in late March in attempts to make insulin more affordable for Kentuckians by limiting the cost of insulin to $30 per 30-day supply for people with state-regulated health care plans or plans purchased on the marketplace exchange, state employees and people under group plans.
According to Kelly, this equates to approximately 20,000 Kentuckians living with diabetes — excluding herself and others she knows.
Around 531,646 people in Kentucky live with diabetes according to the American Association for Diabetes, meaning more than 511,000 are still worried about where, or how they can retrieve their next dose of medicine.
In addition, 1,168,000 people in Kentucky, 35.5% of the adult population, have prediabetes — which means their blood glucose levels are higher than normal but not yet high enough to be diagnosed as diabetes.
In 2017, Kentucky ranked fifth highest in the nation for the death rate due to diabetes, with an increase from 14th in 2014. In 2018, the state reported 15,902 instances where patients coding from the disease were admitted to the emergency room.
In Madison County, 1,301 diabetes patient visits were documented from July 1, 2020 to June 30, 2021 at Baptist Health Richmond (includes emergency department, inpatient and outpatient visits).
“For diabetic patients, the out-of-pocket cost for insulin can be a significant expense. In many cases, patients are responsible for a percentage of the price, or co-insurance, which can be a burden. For high deductible pharmacy benefit plans, the out of pocket expense may be challenging for patients to afford. The cost of insulin and other medications can negatively impact patient adherence and health outcomes, and is a critical area that pharmacists can support by identifying copay savings programs or suggesting formulary alternatives to the prescriber,” said Leslie Hurst, PharmD, BCACP, Baptist Health System Director, Ambulatory & Specialty Pharmacy.
Laurel Smith, PharmD, Baptist Health Richmond Professional Pharmacy Manager, agreed.
“Every day more than 4,000 people are newly diagnosed with diabetes in America. More than 122 million Americans have diabetes or prediabetes and are striving to manage their lives while living with the disease,” Smith said. “From 2000 to 2018, diagnosed diabetes in Kentucky adults doubled from 6.5% to 13.7% which is 1 in 7 Kentucky adults. Kentucky ranks 8th highest in the U.S. for diabetes prevalence. Diabetes can be associated with complications such as heart disease, stroke, blindness, kidney failure, lower-limb amputation and ketoacidosis. These can reduce length and quality of life. Diabetes cost Kentucky $5.16 billion in total medical expenditures, lost work and wages in 2017. While this is bad news, the good news is diabetes is manageable and in many cases preventable. Much of diabetes-related sickness and death can be prevented, delayed or reduced.”
For Kelly and Lautner, there is still more work to be done to help those Kentuckians.
T1 International and members of Kentucky Affordable Insulin for All are working together to rally and draft a new bill they think will be more inclusive, titled Alec’s Bill.
According to Lautner, Alec’s Bill was first passed in Minnesota’s 2020 legislative session as a way to help people who, like Alec Smith, are uninsured, regardless of the reason.
“Too many bills focus solely on costs of copays, but as we have witnessed in the last few years, many people are working at employers who don’t offer insurance, offer only high deductible health plans, or are working while covered under insurance, but their plans have removed their prescribed insulin from coverage,” she said. “Every human must have insulin to survive, and we would like our version of Alec’s bill to cover everyone continuing to fall through the cracks of a broken system.”
David Johnson, a Richmond resident also living with diabetes, has been working with the Kentucky Insulin for All chapter, and works to reach out to state lawmakers and tell them why insulin is important and not just a lifestyle “eating” change. He said the group is working harder than ever to help pass Alec’s Bill.
“When the copay cap bill was proposed last year, we knew it wasn’t enough but what we did know was that it was the start of future bills to help diabetics across Kentucky,” Johnson said. “Big pharma and Frankfort lobbyists had their say in the bill from day one and minimal changes were made. I never rationed my insulin but I did rely on Twitter for insulin donation as I was between health insurance plans. I can’t pay the list price. Some would suggest, including State Senator Alvarado of Winchester, that a generic version offered at a big retailer is the solution when in fact medical professionals found that their insulin has been found not to fully treat insulin dependent individuals.
“Alec’s Bill is needed in Kentucky,” he said plainly. “In fact in 2019, we tried a similar version of Alec’s Bill that would help in emergency cases but big pharma fought us everyday and eventually won over Frankfort policy makers/politicians. We are back at it again with the upcoming session and with a louder and stronger voice than ever before.”
But before the legislative session can commence, there are several action steps people living with — or without — diabetes can take to achieve affordable insulin for all.
One of which is to email your representatives including Gov. Andy Beshear, Rep. Andy Barr, and Senator Rand Paul to voice concerns over the healthcare crisis including insulin.
Additionally, individuals can sign the Investigate Insulin Now petition which requests the Federal Trade Commission to investigate the “Big Three” pharmaceutical manufactures colluding to hike insulin prices to ask ‘Why?’ To sign the petition, visit investigateinsulinnow.com/our-petition.
Kelly said for those living with diabetes and looking for a temporary “band-aid” solution, the Eli Lilly “COVID coupon” is a good option. To find the coupon, visit lilly.com.