Four Years After Son’s Death From DKA, Ohio Couple Still Advocating to Improve Access to Insulin

The New Year is a difficult time for Dan and Judy Houdeshell, who lost their son, Kevin, in early January of 2014. Kevin died after going without insulin for nearly nine days due to an expired prescription. Four years later, his family members still grieve; but they are celebrating legislation passed in seven states that authorizes pharmacists to assist patients who find themselves in the same situation.

As previously reported, Kevin’s pharmacist denied his request to refill a prescription for insulin on New Year’s Eve in 2013 because the ordering physician could not be reached to approve the refill. The next day, Kevin tried to contact his doctor but was put on hold for a long period of time before being disconnected. The same thing happened on January 2. So, Kevin did his best to keep on without insulin. He continued to go to work at TGI Fridays—that is, until he developed flu-like symptoms.

Kevin was sent home from his job when he began to feel noxious, disoriented, and dehydrated. In the next few days, he told friends not to come over because he did not want to infect them. His family has since surmised that Kevin was most likely experiencing the symptoms of diabetic ketoacidosis (DKA), rather than the flu. Furthermore, they believe that DKA was preventing their son from thinking rationally. This may explain why Kevin did not call 911 or reach out for help from family or friends.

Kevin’s unawareness about his worsening DKA may be due to a pervasive lack of information within the community. “I have been in contact with so many people [with Type 1] since Kevin’s death [who] are not aware of DKA, its symptoms, the results if not rectified, and how fast DKA can kill someone or put them in grave danger,” Dan told Insulin Nation. Even more troubling, “many in the medical profession (including ER hospital settings) are not are not aware of what can happen if someone goes without their insulin for any amount of time.”

Kevin’s father also acknowledges that his son’s decision to privately manage diabetes may have been a factor. Diagnosed at age 27, Kevin “accepted it, did what he was supposed to do, and hid it from most of those around him.” Dan urges others not to do the same, since they, too, may one day need a lifeline. He says that it is critical for individuals to have a support system of family, neighbors, friends, and co-workers who know about the risks and warning signs associated with diabetes.

Shortly after their son’s tragic death, the Houdeshells pushed for the Ohio legislature to pass a bill authorizing pharmacists to dispense insulin and other life-saving medications without a prescription under certain circumstances. According to the law, there must be a record of the expired prescription on file at that pharmacy; the pharmacy must have attempted unsuccessfully to contact the prescribing provider; the medicine must be essential; and the medicine cannot be a controlled substance. If these criteria are met, the pharmacist may issue a 30-day supply no more than once a year. Similar laws have passed in Florida, Arkansas, Arizona, Wisconsin, Washington, and Illinois; and they are in the process of being passed in Pennsylvania and Idaho.

Advocates in other countries are also taking action. In fact, a representative from the World Health Organization in Geneva contacted Dan about Kevin’s story. The two discussed ways to improve access to insulin among communities in South Africa, where the costs of the drug can far outweigh an individual’s income. The founder and CEO of T1International in London also reached out. This organization’s website now includes Kevin’s story to educate the public about the problems of unaffordability and inaccessibility. Residents from other countries around the world have expressed intent to advocate for similar laws.

Of course, the passage of new legislation is only half the battle. The other half is implementing the legislation. In Ohio, the state’s pharmacists association has launched a massive education program to inform members of the change. But not all pharmacists within the state are members of the association, so there may be many who do not know about the law change. It is not known what, if anything, other states are doing to educate pharmacists and members of the public about their own versions of the law.

Because of hurdles like this, the Houdeshells urge individuals with diabetes to always have a backup plan. “What will you do if you are ever caught without insulin and are refused insulin refills? It happens way more than anyone realizes.” They think that the people most vulnerable are “young people leaving the confines of their families for the first time and maybe going off to college [and] those who are diagnosed as a T1 when they are young adults.” Then again, the Houdeshells have heard from many who “never thought this would happen to them because they were anal about checking their glucose (their words) BUT it has happened. They got caught some way, somehow, with no insulin and in dire need.”

The Houdeshells suspect that many deaths from DKA may be attributable to insulin shortage. They cannot know for certain because details like this “do not show up on the death certificate—only that this person died from DKA or non compliance as a patient.”

Kevin’s family members have many fond memories of him. “He loved his Cleveland Indians and was making an effort to visit every stadium in the country,” they report. “He had managed to sit in about half of them.” He was a kind and generous with anyone in need. “If a neighbor couldn’t get their lawn mower started, he’d not only help them get it started, but he would then mow their lawn for them as well. Same with shoveling snow or cleaning up fall leaves.”

The Houdeshells take special comfort in the writings and thoughts that they have found saved on Kevin’s computer. One of those says, “Make something positive from your tragedies, struggles, and difficulties. We are all capable of making that choice and incredible things will happen.” This is both a poignant and prophetic note of his own legacy.

You can read more about Kevin’s story and receive updates about relevant legislation by joining the Facebook page his family has created in his memory.

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Audrey Farley is a former editor of Insulin Nation.

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