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Graphic designer Jacquie Persson, who lives with Crohn’s disease and relies on a medication called Stelara, tells Teen Vogue it can cost upwards of $25,000 per prescription for her appropriate dosage. As of this month, Good Rx, a platform that tracks costs, coupons, and discounts for medications, put the lowest out-of-pocket cost for the most common dosage for adults with Crohn’s at over $23,500.
Persson applied for a prescription-assistance card provided by the manufacturer, and with her employer-provided health insurance, she was able to drive her copay down to a manageable $5. The right combination of coupons, discounts, and insurance can make all the difference. But without them, the affordability gap is shocking. “That’s a scary thing too, just knowing that without my biologic [Stelara], I would be sick and it’s hard to function, hard to work, all of that,” Persson says. “But at the same time, I know I need to work to have insurance or keep my insurance.”
Research shows that Crohn’s can flare up in response to heightened stress, meaning the extreme uncertainty and anxiety caused by COVID-19 can put people like Persson at greater risk. And pandemic-related stress can increase the possibility of a flare up while also tossing job insecurity into the mix. If Persson and her husband lost their jobs and insurance coverage, she says, “For sure we couldn’t pay for the medication out of pocket. I honestly don’t even know if we can pay for my specialist out of pocket.”
Writer and New Jersey resident Lisa Wetzel-Trainor, who has fibromyalgia and severe PTSD, tells Teen Vogue that even with insurance, the medication she needs to function, Vyvanse, is difficult to afford. Unlike other medications, there’s no generic alternative to Vyvanse, and Wetzel-Trainor has found that the most similar alternatives are “incredibly ineffective in comparison.”
Late last year, her health insurance added Vyvanse to the list of medications the company won’t cover, stating it would only cover generic medications beginning in January 2021. Wetzel-Trainor and her partner actually decided to get married a year earlier than planned — when she was 25 — to prevent a lapse in her coverage since she would become ineligible for her parents’ insurance after turning 26. Now, five years later, despite having coverage, she still has to pay for her prescription out-of-pocket.
“I picked up my medication yesterday and my one prescription for Vyvanse, which is like 40 milligrams for 30 days, was $276 with a coupon — a manufacturer’s coupon too,” she says. If the manufacturer can provide a coupon that can theoretically be used by every purchaser, she implies, why not just lower the price?
In addition to the financial stress of managing the costs of her medication, Wetzel-Trainor says, the pandemic has created more anxiety about her health. Medical experts have said repeatedly that COVID-19’s long-term definitive health effects are not yet fully known. “If I get COVID and I get worse, what am I gonna do? We don’t know what ‘long COVID’ looks like, but on a body like mine, that fights so hard to function on a very basic level, I was terrified of what a virus was going to do,” she explains. “I can’t get [COVID-19] because I’m already screwed. If I get worse, I don’t even know how screwed we’re gonna be.”
Wetzel-Trainor agrees that the pandemic has and continues to create unpredictable economic challenges for people across the country, but she also emphasizes that for people with chronic illnesses, the financial burden associated with medical debt and the stress of attempting to avoid that debt accrual at all costs is a much longer-term problem.
“Most chronically ill people, if we had the money and there was a cure, I would throw that money at it. I would rack up all the medical debt in the world in order to be healthy,” Wetzel-Trainor says. “But the fact is, I’m still racking up medical debt and I’m not getting any better, so something’s gotta give.”
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