(Reuters Health) - Many patients with neurologic disorders like multiple sclerosis, epilepsy and Parkinson’s disease have seen steep increases in their out-of-pocket costs for drugs in recent years, a U.S. study suggests.
Researchers examined data on out-of-pocket drug costs from 2004 to 2016 for more than 912,000 people with private health insurance who had multiple sclerosis, peripheral neuropathy, epilepsy, dementia or Parkinson’s disease.
All of the patients took at least one medication to treat these disorders, and researchers tracked costs for the most commonly prescribed and most expensive drugs for each condition.
By far, costs rose the most for multiple sclerosis medicines. Patients’ average monthly out-of-pocket costs for these drugs increased from $15 in 2004 to $309 in 2016.
Patients’ cumulative out-of-pocket costs over the first two years after diagnosis were $2,238 for multiple sclerosis, 10-fold higher than the $230 paid out-of-pocket by newly diagnosed epilepsy patients. Multiple sclerosis patients with the highest costs spent $9,855 over two years, compared to $865 for epilepsy.
“Our study demonstrated that out-of-pocket costs have risen from being negligible to quite substantial for certain medications over the past 12 years,” said lead study author Dr. Brian Callaghan of the University of Michigan in Ann Arbor.
“This matters for patients because out-of-pocket costs can cause financial hardship and potentially decrease medication adherence,” Callaghan said by email.
Out-of-pocket costs are surging for many reasons. One culprit is the debut of newer injectable biotech drugs that have higher price tags than older generic pills, researchers note in Neurology. Another is the rising popularity of high-deductible health plans that have lower insurance premiums but typically require patients to pay higher out-of-pocket fees at the pharmacy.
With high-deductible health plans, people paid more than twice as much out-of-pocket for multiple sclerosis drugs. In 2016, multiple sclerosis patients with high-deductible plans paid an average of $661 per month compared to $246 per month for those in low-deductible plans.
While shifts in out-of-pocket costs for brand name medications varied by drug and disease, patients generally encountered increases in their costs for medicines to treat dementia and Parkinson’s disease, the researchers found.
The study didn’t include every drug to treat the five neurologic conditions it examined, and it only focused on medicines for certain diseases.
It’s also unclear from the study how much rising out-of-pocket costs might lead patients to delay or skip needed refills, or how much expensive drugs might help curb utilization or spending on hospital or physician services, said Geoffrey Joyce, chair of pharmaceutical and health economics at the University of California School of Pharmacy in Los Angeles.
“There is less price sensitivity for life-saving drugs,” Joyce, who wasn’t involved in the study, said by email. “For example, raising the out-of-pocket price for a specific allergy medication will have a larger effect on its use (because they are non-essential and there are other therapeutic substitutes including over-the-counter) than changes in the out-of-pocket price of a cancer medication or drugs to treat multiple sclerosis.”
The conditions in the study can be life-threatening if not properly managed with medications, said Stacie Dusetzina, a health policy researcher at Vanderbilt University School of Medicine in Nashville, Tennessee, who wasn’t involved in the study.
“For example, other studies have found that patients with epilepsy who do not take their medications as prescribed have a higher risk of emergency department use, hospital admissions, injuries and death,” Duzetzina said by email. “The good news here is that many of the conditions studied have affordable treatment options.”
Patients should speak up when costs are too high, said Dr. Aaron Kesselheim of Brigham and Women’s Hospital and Harvard Medical School in Boston.
“The most important thing they can do is to tell their doctors about these cost issues, since many physicians are unaware of how much their patients pay for medications,” Kesselheim said by email. “In certain cases, there may be a lower-cost generic alternative that would work just as well.”
SOURCE: bit.ly/2u4zomO Neurology, online May 1, 2019.