As a teenager, John Miller was diagnosed with Crohn’s disease, an inflammatory bowel condition that required several major surgeries to remove part of his intestine.
Miller, now 39, has been physically unable to work full-time since his last major surgery in 2014. He struggled to obtain disability insurance, having to live with and rely on family during the appeals process until it was finally approved.
But now Miller, of Chicago, is stuck in a cycle of having to regularly file for bankruptcy due to the debt he accrues every month from the co-pays of his medication.
Every month he gets an infusion of the drug Entyvio, which is used to treat Crohn’s.
“The cost before insurance is $1,800 per infusion. My disability insurance only covers half of that. My co-pay is $900 a month, which is more expensive than my rent,” said Miller.
“I’m expected to pay $900 for an infusion that I need. It is a necessary medication for my disease. It’s my main medicine. I’ve also been refused my infusions due to insurance refusing to authorize it even though I’m disabled.”
He said missing a single dose would disrupt his treatment and cause his disease to worsen.
He filed bankruptcy last year to discharge the debts from his monthly bills for the infusions and plans to do the same again this year because he has no way of paying for it with just social security disability income to live on. “My disease destroys my physical abilities and at the same time really dampens my mental health. It’s really hard to stay optimistic when you feel helpless,” added Miller.
Miller is just one of millions of Americans who struggle to afford the prescription drugs and medical supplies they require to survive.
According to a poll conducted by the Kaiser Family Foundation in February 2019, 24% of adults and 23% of senior citizens report difficulty in affording their prescription medications. A Gallup poll published in November 2019 reported 22.9% of Americans could not afford their prescription medications at least once over the past year.
The high costs of prescription drugs in the United States are being driven by excessive drug prices set by pharmaceutical corporations, which continue to increase prices of hundreds of drugs every year. In 2018, pharmaceutical companies reaped 63% of all profits in the US healthcare system, despite collecting only 23% of the industry revenue.
‘We drained all our bank accounts’
LaDawn Stuben of Tempe, Arizona, drives to Mexico twice a year to fill up on her asthma medication, where it costs a fraction of the price, even with health insurance coverage.
“My maintenance inhaler, Symbicort, costs $110 a month here after insurance. In Mexico it’s $20. My rescue inhaler, albuterol, is not covered by my insurance plan and would be $75 out-of-pocket. In Mexico they’re $3 each,” Stuben said. She has been making the trip over the past five years, saving thousands of dollars in doing so.
Kristy Sullivan Pardeck and her husband, both high school teachers in Fenton, Missouri, have struggled to afford the prescription medicines and medical supplies their five-year-old daughter, who was born with spina bifida, requires to live. Their daughter’s catheters and enemas cost $2,000 a month out of pocket, on top of the medical care expenses and medication costs over the past few years not covered by their insurance.
“We could never catch up. We had to alternate which utility bills would get paid. Our electricity was turned off once or twice. We overdrafted every month for several years,” said Sullivan Pardeck. Her family and employer have held several fundraisers over the past few years and she’s been able to find a few different charities to help cover current bills, but still struggles to afford her required medical supplies and the couple have thousands of dollars in credit card debt from medical expenses when her daughter was first born.
“We are still recovering from draining all our bank accounts and charging the bills that first year,” she said.
Katya Grey, a single mother in Atlanta, struggles to afford the several medications she requires to treat her epilepsy, allergies and a heart condition.
“My current monthly cost for my medications is $375,” said Grey, who also pays a $250 monthly premium for health insurance. Her Epipen is expired because she can’t afford the $385 it costs. “Things happen that cause me to forgo my monthly medications. I have had to break pills and skip doses just to make them stretch a little longer.”
In December 2016, Grey was hospitalized after stretching a one-month supply of epilepsy medication for three months, where she was put in a medically induced coma to stop a series of seizures.
“After those events, I had to make sure I had those medications no matter what. There are months where I do run short because of costs, but I’ve gotten better at just reducing doses, rather than skipping them,” added Grey. “It’s a monthly stressor.”
Most expensive drugs in the developed world
Americans spent $1,220 per person annually in 2017 on pharmaceutical medications according to the latest data from the Organization for Economic Cooperation and Development, by far the most of any developed nation in the world.
A report published in the journal Health Affairs in January 2019, found drug costs are driven largely by year-on-year price hikes made by pharmaceutical manufacturers on drugs already on the market rather than innovation, as often claimed by the pharmaceutical industry. “Our results are relevant from a policy perspective because they show that price increases do not necessarily reflect innovation or money spent on research and development,” said Dr Inmaculada Hernandez, an assistant professor of pharmacy at the University of Pittsburgh and lead author of the study.
Democrats and Republicans in Congress have voiced support for passing legislation to address high costs of prescription drugs in the US, but have yet to come to an agreement on legislative action. President Trump has wrongly claimed prescription drug prices have decreased under his administration, while struggling to enact administrative reforms to lower prescription drug costs.
For the first two years of their daughter’s life, Britany LiButti and her husband of Buffalo, New York, had to pay nearly $3,000 for prescription medications despite having health insurance coverage. Their daughter was born with a congenital disorder at birth, vesicoureteral reflux, and was only recently taken off medication for it.
“Even after insurance our medical bills from our child’s medications, surgeries and hospital stays have forced us to crowdfund for help, and we are still tens of thousands of dollars in debt. Medications and lifesaving medical care in this country have financially ruined our family,” said LiButti. “We are still constantly getting calls, emails and reminders that we owe various places money.”