Five-year-old Aurora Pugh of Farmington, Minnesota, loves swimming and dancing. She also suffers from severe epilepsy. After spending months taking dance lessons, “Aurora slept through her first dance recital after an overnight seizure and we could not get her to wake up,” her mother, Lindsay Pugh, said. “As parents, that was a difficult moment.”
Aurora’s epilepsy diagnosis, Lindsay said, has “made us appreciate every moment more.” But the high costs of her medications have strained the family’s finances. Lindsay must always have a rescue medication—known as Diastat—on hand in case Aurora has a seizure that lasts longer than about three minutes, and that medication can cost her up to $560 for just two doses. Aurora has had as many as six seizures in a single week, so Lindsay has sometimes had to purchase Diastat five times in just a month.
There’s a generic version on the market, but that must be special-ordered and still costs Lindsay more than $250. “With epilepsy, it’s not okay to not have rescue medications on hand,” says Lindsay, “so we don’t always have the luxury of waiting.”
Aurora also takes a name-brand drug called Onfi to treat her seizures. Manufactured by a large multinational pharmaceutical company, Lundbeck, a month’s supply costs as much as $3,000 in the United States.
As Aurora’s medical bills piled up, her family scrambled to keep up with the costs. Their out-of-pocket costs totaled around $6,500 just for prescription drugs last year. And their financial situation grew more dire when Lindsay was laid off by her employer. The family cut back disposable spending to the bone to pay for Aurora’s prescriptions. They also raised over $700 by crowdfunding from family and friends to help pay for Aurora’s rescue medication.
But even that looked like it might not be enough to keep up with the costs of Aurora’s life-saving medication. Running out of ways to pay, the family prepared to take a mortgage out on their home. “We shouldn’t have to take out a loan to keep her alive,” Lindsay said, “but we will.”
The United States pays more for prescription drugs than any other comparable country in the world. The American prescription-drug cost crisis stems from the basic fact that the pharmaceutical industry has unchecked power to name whatever price it wants to take from the very people whose lives depend on its products. In economic jargon, that’s called “inelastic demand”—sky-high prices barely affect demand for drugs, because people simply need them to survive.
Without any countervailing pressure from government, pharmaceutical companies treat indulging in uncontrolled price hikes as nearly a God-given right. When Nostrum Laboratories raised the price of a single bottle of an essential antibiotic from $474.75 to $2,392, its chief executive, Nirmal Mulye, said, “I think it is a moral requirement to make money when you can…to sell the product for the highest price.”