By Sony Salzman
It’s been almost exactly six years since 36-year old Kevin Houdeshell died from diabetic ketoacidosis after he wasn’t able to fill an expired insulin prescription and couldn’t reach his doctor over the New Year’s holiday.
Since then, Kevin’s parents – Dan and Judy – have been advocating for common-sense legislation that would allow pharmacists to give patients an emergency refill of life-saving insulin, even without an up-to-date prescription. Their proposal – dubbed “Kevin’s Law” – moved swiftly through the legislative process and in 2014 became law in their home state of Ohio.
Since then, at least 17 states have passed laws carving out exceptions for pharmacists to fill insulin prescriptions during emergency situations. These legal reforms are seen by some advocates as the first real sign of progress for improved access to insulin in the United States.
Kevin’s father Dan Houdeshell said he’s glad to see that this legislation seems to be sweeping the nation. Kevin’s law is currently being debated in at least five other states.
“It totally took us by surprise because when we started it, we thought we were only changing the law in Ohio,” Houdeshell said. But Kevin’s law is a make-sense proposal that enjoys bi-partisan support, he said.
“All the lawmakers say that this is easy and it does not cost the States any money. It just saves lives and makes quality of life better for people who need insulin,” he said.
To date, states that have passed Kevin’s law include: Ohio, Florida, Arkansas, Arizona, Illinois, Wisconsin, Idaho, Oregon, Utah, Pensylviania, South Carola, Tennessee, Colorado, Kentucky, Oklahoma, West Virginia, and Indiana.
Building a state-by-state strategy for key reforms
“These are bills to help basically bridge an expired prescription, which for insulin can be very life threatening,” said Allison Bailey, US Advocacy Manager at T1International. Some of the laws go beyond insulin to include other life-saving medicines, such as EpiPens for people with severe allergies or inhalers for people with asthma.
Houdeshell explained that although it’s slow-going pushing for reform on a state-by-state basis, he didn’t think it was a good idea to take this fight straight to Washington D.C. in the hope of federal reform.
“We discussed that option, but the more we talked about it [we realized] that pharmacy laws are state laws, so they have to address them state-by-state” regardless, he said. The strategy of going state by state has been “an easy process, but it’s a slow process.”
Houdeshell and Bailey have worked together to advocate for Kevin’s law in various states and to spread the word in the states where it has already been passed.
They say that outreach to pharmacists is one of the key elements in succeeding. Even in states in which Kevin’s Law exists, a shocking number of pharmacists do not know they are legally allowed to give insulin to patients with expired prescriptions.
“Passing the law is the easy part. People knowing it and complying with it is the hardest part,” said Houdeshell. It pains him that pharmacists across the country might be turning patients away, regardless of the legal ability to hand out insulin.
“Pharmacists that do not fully understand what a diabetic goes through if they don’t get their insulin. That’s shocking,” he said. “All we can do is keep talking about it, keep pushing it, and hopefully nobody else dies from this.”
Opening up broader conversations on medication accessibility
Kevin’s Law has already saved lives, according to Bailey. Not only that, but it has sparked a broader conversation about insulin access beyond the scope of emergency refills. When state legislators start learning about Kevin’s Law, it’s a great opportunity to educate them on the other major reason people die without insulin: skyrocketing drug prices, she explained.
Kevin’s Law “is a great stepping stone [when] getting into the more complicated legislation we’d like to see to get prices down,” Bailey said.
One of those pieces of legislation includes the Alec Smith Emergency Insulin Act. Like Kevin Housashell, Alec Smith tragically passed away while rationing his insulin. Unlike Kevin, Alec was rationing his medication because he had just aged out of his mother’s health insurance plan and couldn’t afford $1,300 for a one-month’s supply. He died at the age of 26.
In the United States, the price of insulin has tripled over the past 10 years. For patients with insurance, this means the out-of-pocket prescription costs have doubled in the same amount of time. In fact, the price has risen so much that today, one in four people with diabetes are rationing their insulin.
Addressing a national crisis on insulin pricing
Unlike most other developed countries, the U.S. government does not negotiate directly with pharmaceutical companies over drug pricing, meaning companies have more freedom to price medications. Over the past two to three decades, pharmaceutical companies have increasingly turned to the US market for the majority of their profits, which is one of the reasons drug prices are increasing in the U.S. at a faster rate than in other developed countries.
In addition, the complex interactions and coupon system that exists between pharmaceutical companies, pharmacy benefit managers, insurers, doctor’s offices, and patients creates a series of opaque and sometimes contradictory incentives. As a result, the list price of insulin continues to increase alongside the coupons manufacturers issue to PBMs, but the price of insulin has actually remained relatively flat for some people with good insurance, while those without or on high-deductible plans suffer.
Nicole Smith-Holt is Alec Smith’s mother. Since her son’s death, she has become an advocate and activist focused on creating a legislative escape-hatch for people who cannot afford their insulin but risk if they walk out of the pharmacy without it.
That escape hatch – the Alec Smith Emergency Insulin Act – is a legislative proposal in Minnesota which would allow financially-strapped people with diabetes a three-month supply of insulin. They would pick up this supply from the pharmacists, and patients would only be allowed to fill one of these ‘emergency’ refills per year.
If it passes, it would be the first law of its kind in the country, said Quinn Nystrom, an activist with type 1 diabetes who was inspired to run for Minnesota’s 8th Congressional District because she couldn’t “sit on the sidelines any longer and wait for people who are lackluster in their responses as I continue to see people die of rationing their insulin.”
Nystrom explained that, unlike Kevin’s Law, support for the Alec Smith Emergency Insulin Act is more divided among party lines. In fact, in Minnesota Republican Senator Eric Pratt put forth his own version of the bill which would require patients to receive their emergency refill from the doctor’s office rather than the pharmacy.
But advocates like Smith-Holt say this approach will place undue administrative and operational burden on physicians, who are unlikely to have proper storage and refrigeration units in their offices.
Ultimately, Smith-Holt would like to see politicians in Washington D.C. do something to put a stop to pharmaceutical price-gouging.
“We really need to do something at the federal level,” Smith-Holt said. “We need to come up with legislation that is going to put limits on the price of pharmaceuticals.”
In the meantime, advocates are leveraging the bipartisan success of Kevin’s Law to educate politicians and the community about the life-threatening consequences of insulin rationing.
If you are living with diabetes, “do not be afraid to speak up,” Houdeshell said. “Nothing is going to be changed if you don’t go to your legislator. Many lawmakers admit that they did not know about the insulin problem until somebody goes and talks to them, and tells them their story.”