More than three years have passed since Dan and Judy Houdeshell lost their son, but even now the northern Ohio parents don't fully know what led to his death.
What they do know is that 36-year-old Kevin Houdeshell ran out of insulin over the New Year's holiday, and he ended up with dangerously high blood sugars that spiraled into diabetic ketoacidosis (DKA), leading to him die alone in his apartment in January 2014.
In the aftermath of that horrible tragedy, the Houdeshells are doing what they can to make sure nothing like it happens to anyone else.
The D-parents have fought for a new law in their state to allow pharmacies to distribute an emergency supply of insulin to those who needed it. That law has been adopted in their home state of Ohio and is now being emulated nationwide: over the past three years, 5 states have passed Kevin's Law, and by the end of the year, 4 more states could join the ranks.
"It's something that has to be done. If we can save one life, it's worth it," Dan Houdeshell said during a recent phone interview. "Kevin would do anything for anybody, so we just have to. We couldn't let it lie without trying to help other people."
Kevin Houdeshell was an avid cross-country runner who was captain of his high school track team. He had a love for extreme weather and outdoorsy activities, including fishing, and he'd drop a line anywhere in the water. He was also a huge fan of the Cleveland baseball team and even made a habit of touring pro baseball fields across the country.
Kevin worked for TGI Friday's since he was 18, working his way up to head bartender.
He was diagnosed with T1D at age 26, and though his parents say they weren't educated on diabetes for the most part, they don't recall Kevin ever saying he'd been misdiagnosed or thought to have type 2 (a common occurrence in those diagnosed as adults). Still, although their son didn't speak about his diabetes much with them, they and those who knew Kevin best say he was diligent with taking his insulin and keeping track of his diabetes in order to enjoy the things he loved most in life.
From what they've been able to piece together, everything came to a head during the holiday break in late 2013.
Dan and Judy Houdeshell had been in Florida for the holidays, while Kevin remained in Ohio. Apparently, his insulin prescription for Lantus SoloStar pens and fast-acting insulin had run out for some reason; they don't know if it was an affordability issue, or just a matter of it being the end of the year and Kevin was doing his best to stretch out his supply until the New Year. Whatever the reason, he ran out of insulin and apparently may have been taking the T2D-targetted metformin to help keep his blood sugars down until he could get an insulin refill.
He went to the pharmacy on New Year's Eve, but was told that because his prescription had expired, they couldn't give him any more without a new prescription. He tried to contact his doctor's office but because of the holiday, wasn't able to reach them and left without the insulin.
Within days, Kevin began having what appeared to be flu-like symptoms of vomiting, cramps, and overall not feeling well. He left work one night and went home sick. When his family and friends hadn't heard from him, a friend went to his apartment and found him there alone. His dad recalls that Kevin was found near the sliding balcony door, which makes him think his son tried to get outside for help.
In the end, it appears Kevin had gone at least four days without insulin before the end.
"We're convinced Kevin didn't know he was dying of DKA," Dan Houdeshell said by phone, trying to hold back tears. "But we're not sure if he knew the symptoms, or if he did, that maybe he was too far gone and wasn't thinking clearly about what was needed."
For their part, the Houdeshells know that other options existed for Kevin, but just weren't fully vetted before the unthinkable occurred. He had resources such as a hospital ER, lower-cost Walmart insulins, and even potential Patient Assistant Programs from the insulin-makers themselves.
While they see the importance of those resources for people facing these life-or-death situations, the Houdeshells recognize that's all in hindsight now; they echo the need for more awareness and education, from people with diabetes and the medical community as well as pharmacists, who are often a last line of defense for those who can't get prescription refills.
After their son's death, Dan says he and his wife spent many sleepless nights angrily wondering how something like this could happen. They talked to an attorney but decided not to go that route. Instead, they focused on the pharmacy side and how their son was able to walk away without getting the life-sustaining medication he desperately needed.
As Dan had worked for the federal government for 35 years before retiring, and as a "policy wonk" with a frame of reference for how policy gets shaped, he began researching pharmacy medication laws and what it would take to advocate for legislative changes.
The family learned their state senator was speaking at a local library and decided to talk with him about a potential legislative fix, and he soon put them in touch with another Ohio Senate colleague, David Burke, who happened to be a pharmacist and had been working for years on state-level expansions to pharmacist prescriptive powers.
Together, they crafted a bill that would allow pharmacists to provide life-saving medication to those with expired prescriptions in certain circumstances.
While they refer to it initially as Kevin's Law, it's since been dubbed "Howdy's Law" (after Kevin's nickname) by those embracing the legislation in other states.
Growing Support for 'Howdy's Law'
Ohio was the first state to pass, logical since it stemmed from the local incident. The bill was passed by the Ohio legislature without any opposition and support from the state pharmacist's association, and Gov. John Kasich signed that into law in December 2015, and it took effect in March 2016.
Under that state's new law, pharmacists there can dispense up to a 30-day supply of medications such as insulin if they can't reach the physician. This is possible only once during a 12-month period and there must already be a prescription record with the pharmacy.
At first, it was only for 72 hours -- but an issue surfaced when pharmacies were prohibited from even following that law, given that insulin isn't packaged in 72-hour supplies and the pharmacies can't exactly open up a bottle of insulin and give out the exact amount (like they can with pill bottles). As a result, a change was needed -- expanding it from 72 hours to 30 days, to allow for this emergency, temporary dose.
Since Ohio's passage, Kevin's (or "Howdy's) Law has been adopted in four other states as of early July: Florida in 2016; Arkansas and Arizona in March 2017; and Wisconsin in June. Illinois's legislature also passed a bill and sent it to the governor, who is expected to sign that soon. Similar legislation has also been introduced in Pennsylvania, South Carolina and New Jersey.
This isn't a coordinated effort, by any means; the Houdeshells say it's state-by-state, based on specific interest from those who live in each particular place.
"We talked about going national, but it would've probably taken forever and Washington is so uncertain, so this is a state-by-state effort," Dan Houdeshell says. "We don't even know how some states got a hold of this, but I found out by just searching online and seeing it was proposed. That's a bit surprising, but it's good to see."
Education and Awareness
For the Houdeshells, this isn't about the truly outrageous high cost of insulin. While they recognize that's become a lightening rod discussion over the past few years in the U.S., their main concern and the one Kevin's Law addresses is access to insulin during emergencies. They have chosen to use their son's tragic story to advocate on that specific issue. To be clear, Kevin's Law is about enabling pharmacies to provide emergency supplies of modern fast-acting and basal insulin, not the older, less-expensive Humulin or Novolin versions that are sold under different names in some pharmacies.
They know those cheaper options exist, but that in many cases basic education and awareness is lacking to ensure PWDs who need insulin can get their hands on it. And pharmacies are a focal point of course for many in the D-Community.
"How many people even know there's a Walmart brand out there? Or that they have older types of insulin behind the counters you can get without a prescription?" the D-father wondered aloud, his frustration mounting. "Doctors don't tell you, and pharmacists don't have the information readily available when they're turning people away. The education process on this whole access issue is terrible, and it really needs to be taken to a whole new level."
While there isn't any coordinated effort on their part, the Houdeshells are eager to make that more of a priority -- and they hope other states considering this change weave that into the legislative proposals. They've been talking with pharmacy students in Ohio, and think that effort, as well as pharmacy conferences, are a way to spread word about this issue and Kevin's Law.
Dan says the Law's slow to be implemented, because many pharmacists may not be aware of it, and even if they are, they aren't sure of what to do. Or sometimes they must wait for corporate offices, which are also uncertain about how to deal with smaller amounts of insulin than usual.
"We rely on you," Dan said, echoing what he would say to the pharmacists who face this issue and might be skeptical about the new law. "You're the glue between the doctors and insurers. You make a difference, and sometimes it's life or death."
Making a Difference for the Greater Good
Dan and Judy have spent the past three years fighting for Kevin's Law, and they're starting to feel the effects. They're now looking at taking a break from all the advocacy and lobbying, as they haven't fully had a chance to heal and they need some time for themselves.
Yet they continue to hone in on a simple reality:
"A lot of people run into this access issue every day. And some die, like Kevin. The reasons why it happens are not all the same, but the theme is that we have a system that makes it too difficult to get what you need to stay alive. It's designed for people to fail, and unless you know how to navigate it and fight, you are in danger," Dan says.
He adds: "Life slips away so quickly, and that's what happened with Kevin. He enjoyed his life so much and wanted to live. He was a doer, and would've done what he needed to survive if he'd been able to, and had access to what he needed. That's what all of this is about, for us."