Hi, I’m Sarah Esterman. I’m a 28-years-old and I live in Portland, Oregon with my partner, my cat, and a bowling ball of a dog named Parker. I work in marketing for a FinTech startup, and I spend my work days trying to turn complex and confusing financial jargon into something easily understandable by the average person. I also have a rare, difficult-to-treat medical condition — but I know I’m not alone in struggling with high prescription drug costs.
A few years ago, I was diagnosed with inappropriate sinus tachycardia (IST), a very uncomfortable condition that gives me an abnormally high heart rate, dizziness, difficulty exercising, and fatigue. IST isn’t a well-understood condition—we don’t know what causes it and it can be very difficult to diagnose and treat. Because of that, it was really hard to find a drug that helped make my symptoms more manageable.
When I finally found something that helped me manage some of my symptoms, my insurance refused to cover it because it was an off-label use. Out of pocket, the drug would cost me $460 a month—which I can’t reliably afford. Affording a drug that could drastically improve my life should not be such a burden. But it is, and so my IST currently goes untreated.
Because of this, I’m not able to do many of the things I used to enjoy. I used to be an avid hiker and rode my bike everywhere. But both of those cause my heart rate to be too high for too long. Because IST can also cause rapid blood pressure changes, even walking short distances or standing for too long can sometimes be difficult. Even regular work stress can cause a lot of discomfort with this condition –– not to mention the exhaustion that comes with my heart constantly working overtime (or the fact that we don’t even know the long-term effects of untreated IST).
If drugs were more affordable, my day-to-day life would be significantly better. I wouldn’t have to worry about my heart rate spiking so high every time I stand up, regular stress wouldn’t necessarily give me a tachycardic episode, and I could go back to doing the things I love.
I shouldn’t have to be living with an untreated heart condition because of too-high drug costs, but the reality is being able to afford the drugs we need in this country is not guaranteed. Drug prices are simply too high. It’s completely unacceptable that patients have to go without access to the medication they need because they’re too expensive, for seemingly no reason other than profit.