Providing Pathways to Productivity

I remember skipping one of my favorite classes – band – because I needed to nap. The extreme and unpredictable need to sleep was debilitating, affecting my school attendance and social life. For some people, that is still their experience with narcolepsy, a rare condition that only affects about 1 in 2,000 Americans.

When my symptoms started in high school, I experienced an unimaginable level of fatigue. Driving home after school became difficult and frightening. Some days I was so sleepy that I could literally cry or feel like I would die if I did not rest.

But I am one of the lucky ones: I saw a TV ad on “excessive daytime sleepiness,” which encouraged me to find a doctor and receive a diagnosis of narcolepsy. Many people have to wait years – typically 8 to 15 – after symptoms start before being diagnosed.

I cycled through medications because of side effects. When my nurse practitioner prescribed a nighttime medication, I finally experienced restful sleep. This medication helped, but I had to take one dose at bedtime, then wake up 2.5 hours to 4 hours after falling asleep to take the second dose. Every night. When I was in high school, my sister would wake up to ensure I didn’t sleep through my alarm, so she never had a full night’s sleep either, which made me feel guilty.

In college, I regularly missed multiple alarms for my second dose of medication. At 4AM, I’d be trying to “do the math” to calculate if I had enough time for the second dose to salvage the next day or if I’d be unable to drive to class the next morning. (With this type of medication, you can’t drive for 6 hours after your last dose.)  

This regimen was highly disruptive and unsustainable. I felt saved when I learned of a study for an extended-release form of this drug, which only requires one dose before bed. I no longer miss doses or subject another person to interrupted sleep every night. I am in control of my regimen and consistent with my medication. 

It frustrates me that this much better drug has not been on the market. A leading manufacturer of the twice-nightly drug prevented entry of other safe – and in my opinion, better – alternatives by using a little-known loophole affecting drug patents. Drug companies could (and have) patented safety programs for certain medications, and then list those patents with a government agency in a way that would stifle any competition as long as that patent exists. 

This cannot possibly be the intent of the law, and in fact, two U.S. senators have introduced a proposal to prevent this anticompetitive behavior – paving the way for more innovative and sometimes less expensive treatments for patients. This must become law so others like me aren’t beholden to bad actors in the pharmaceutical industry who prioritize profits over patients.

Now I am taking 18 hours of coursework at the Ohio State University, working three days a week, and coaching multiple youth robotics teams – five of whom qualified for state championships! None of this would be possible without the ability to sleep through the night uninterrupted. 

I was lucky – not only in getting a diagnosis quickly, but also in having access to a life-changing medication in a clinical study. People with narcolepsy should be able to access the medicines that work best for us and our needs. Congress must prioritize closing this patent loophole on behalf of patients like me and the tens of thousands of us across the country. 

Katie Lancaster is a senior at Ohio State University.