Richmond resident Rebecca Kelly has lived with diabetes since 2000 – almost 21 years.
Like many, she needs insulin and a pump to help keep her alive.
According to Kelly, the last few years have made this more difficult.
After struggling with insurance companies, she and her husband joined Medi-Share, a cost-sharing program that doesn’t cover prescription costs. Therefore, a 90-day supply of her insulin would cost her a total of $ 1,200, or $ 300 per vial.
One night, she was doing what many who buy insulin do: take an inventory of her personal medical stock.
“I remember, I’ll never forget that, I had a vial left,” Kelly began. “I remember thinking, ‘It’s going to be fine, there’s enough in the bottle to last for me until another refill.’ That night I dropped the vial and it broke, crashing to the floor. Immediately I started having a panic attack and thought, “I didn’t. $ 1,200 right now to buy this drug. “I was literally on the floor shaking and crying.”
At that point, she and her husband decided that something needed to be done differently. The couple researched different avenues for solutions and met people who would travel to Canada for more affordable insulin prices.
“We already had our passports so it was okay and I said, ‘Let’s do this,'” she recalls.
Not knowing how anything would turn out, they drove north and arrived at the Olde Walkerville Pharmacy in Windsor, Ontario, just across the border.
Here Kelly didn’t need a prescription and could just come in and tell them how many vials she would like.
“It was like walking in for a cup of coffee,” she said.
Kelly was able to get eight vials from the drugstore for a total cost of $ 240. While in the United States, eight vials would have cost him $ 2,400.
The couple, along with Kelly’s prescriptions and the newly acquired stock, returned to the border patrol where they were asked about the reason for their visit and how much medication they had received.
“I told the man eight and he laughed,” Kelly exclaimed. “I said, ‘Okay, could I have had more?'”
He motioned for them to move on.
The couple made the six to eight hour trip to Canada again (a total of nearly 16 hours of driving in one day) for other vials just before the pandemic closed.
Kelly said they were concerned that they might not be able to get or pay for her insulin in the long term.
She said she was considering shipping insulin, but the risk was too great because border control can hold any package, for any reason, for up to two weeks. This would be a big deal since insulin requires refrigeration.
“It could sit there for two weeks and not be refrigerated, and there you paid that money and they keep it for two weeks and there’s a good chance you’re just playing a game. Are you going to get it. or not? ”She asked.
Since the pandemic swept across the United States, travel outside the country has become virtually impossible.
Now, if she wants to travel to Canada, a COVID-19 test must be administered despite the vaccine 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 two extra weeks and $ 2,000? Going there is not an option right now,” she said.
In the meantime, Kelly receives a “COVID coupon” from Eli Lilly, a pharmaceutical company that makes her prescription Humalog, and it costs her $ 25 a vial.
However, this coupon expires on December 31, 2021.
As time is running out, Kelly has partnered with others with diabetes in hopes of creating legislation that makes insulin affordable for everyone.
“You get a coupon for paper towels, not a life-saving drug,” she said.
Kelly joined T1 International as co-chapter manager with Angela Lautner, who became involved in protests against manufacturer Eli Lilly.
Representatives were unable to comment on the protests due to their absence from the office during the “summer shutdown” from July 5.
According to Lautner, T1 International believes that everyone who needs to inject insulin to survive should be at every table where the cost of insulin is discussed and the bills are written.
“Instead of saying that accessing basic insulins that were marketed over 20 years ago is ‘complicated’, we offer solutions that can be a combination of bills from other states or our own ideas as that patients struggling with the costs of insulin, whether they are insured or The cost of insulin is not complicated. Three insulin manufacturers set the list price and can choose to lower that price at any time ” , she told The Register.
Last year alone, House Bill 95 was approved in late March with the goal of making insulin more affordable for Kentuckians by limiting the cost of insulin to $ 30 per 30-day supply for people on publicly regulated health care plans or plans purchased on the market. stock exchange, government employees and people under group plans.
According to Kelly, this equates to roughly 20,000 Kentuckians living with diabetes – excluding herself and others she knows.
According to the American Association for Diabetes, approximately 531,646 people in Kentucky are living with diabetes, which means more than 511,000 are still worried about where and how to get their next dose of the drug.
In addition, 1,168,000 people in Kentucky, or 35.5% of the adult population, have prediabetes, which means their blood sugar is above normal but not yet high enough to be diagnosed with diabetes.
In 2017, Kentucky ranked fifth in the country in death rate from diabetes, with an increase from 14th in 2014. In 2018, the state reported 15,902 cases where patients coding for the disease had been admitted to the emergency room.
In Madison County, 1,301 diabetic patient visits were documented from July 1, 2020 to June 30, 2021 at Baptist Health Richmond (including emergency room, inpatient and outpatient visits).
“For diabetic patients, the direct cost of insulin can be a significant expense. In many cases, patients are responsible for a percentage of the price, or the coinsurance, which can be a burden. For High Deductible Pharmaceutical Benefits The cost of insulin and other medications can negatively impact treatment adherence and patient health outcomes, and is a critical area that pharmacists can support by identifying co-payment savings programs or by suggesting alternatives to forms. 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 diagnosed with diabetes in America. More than 122 million Americans have diabetes or prediabetes and struggle to manage their lives while living with the disease,” Smith said. “From 2000 to 2018, diabetes diagnosed in Kentucky adults doubled from 6.5% to 13.7%, or 1 in 7 Kentucky adults. Kentucky is ranked 8th in the United States for prevalence of diabetes. Diabetes can be associated with complications such as heart disease, stroke, blindness, kidney failure, lower limb amputation and ketoacidosis. These can reduce the length and quality of life. Diabetes cost Kentucky $ 5.16 billion in total medical expenses, lost jobs and salaries in 2017. While this is bad news, the good news is that diabetes is manageable and, in many cases, preventable Much of the disease and death associated with diabetes can be prevented, delayed or reduced.
For Kelly and Lautner, there is still work to be done to help these Kentuckians.
T1 International and the members of Kentucky Affordable Insulin for All are working together to rally around and draft a new bill that they believe is more inclusive, called Alec’s Bill.
According to Lautner, Alec’s bill was first passed in the Minnesota legislative session in 2020 to help people who, like Alec Smith, are uninsured for whatever reason. .
“Too many bills focus only on co-pay costs, but as we have seen over the past few years, many people work for employers that don’t offer insurance, only offer high-deductible health plans or work while covered by 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 who continues to fall through the cracks of a broken system. “
David Johnson, a Richmond resident also living with diabetes, has worked with the Kentucky Insulin for All chapter and is working to reach out to state lawmakers and tell them why insulin is important and not just a change in fashion. life. He said the group was working harder than ever to help push through Alec’s bill.
“When the quota cap bill was proposed last year, we knew it was not enough, but what we did know was that it was the start of future bills. to help Kentucky diabetics, ”Johnson said. “Lobbyists for the big pharmaceuticals and Frankfurt had their say on the bill from day one and minimal changes were made. I never rationed my insulin but relied on Twitter for the donation. insulin because I was between two health insurance plans I cannot afford the list Some would suggest, including State Senator Alvarado of Winchester, that a generic version available at a major retailer is the solution while ‘in fact healthcare professionals have found that their insulin does not fully treat insulin dependent individuals.
“The Alec Bill is needed in Kentucky,” he said simply. “In fact, in 2019 we tried a similar version of Alec’s bill that would help in emergencies, but the big pharmaceutical companies fought us every day and ultimately won over the policymakers / politicians of Frankfurt. We’re coming back to that with the upcoming session and with a louder and louder voice than ever. “
But before the legislative session can begin, there are several steps people living with and without diabetes can take to get insulin affordable for everyone.
One is to email your representatives, including Governor Andy Beshear, Representative Andy Barr, and Senator Rand Paul, to voice their concerns about the health care crisis, including insulin. .
Additionally, individuals can sign the Investigate Insulin Now petition which calls on the Federal Trade Commission to investigate the “Big Three” drugmakers agreeing to raise insulin prices to ask “Why?” To sign the petition, go to investigationinsulinnow.com/our-petition.
Kelly said that for people with diabetes and looking for a temporary “band-aid” fix, Eli Lilly’s “COVID coupon” is a good option. To find the coupon, visit lilly.com.