The financial cost of having a neurological disease such as Parkinson’s or multiple sclerosis is growing.
Those are the findings of a new study funded by the American Academy of Neurology and published in the organization’s journal Neurology.
In it, researchers say they found the average out-of-pocket costs for a number of the drugs used to treat such diseases have skyrocketed over the past 12 years.
The biggest reason, the researchers say, is the increasing use of high-deductible insurance plans. Such plans typically offer cheaper premiums than more traditional plans but much higher deductibles.
That, plus new, high-priced drugs coming on the market, accounts for the increase in costs, the researchers stated.
“The main reason for the increase is that more people are in high-deductible health plans or their deductibles are higher even if not classified as high,” Dr. Brian Callaghan, lead study author and a neurology professor at the University of Michigan as well as a fellow of the American Academy of Neurology, told Healthline.
“The other main reason is that out-of-pocket medication’s costs used to consist just of copays, but now these costs also go toward patient’s deductibles,” he said.
Those trends have contributed to increases that are most pronounced for drugs to treat multiple sclerosis (MS).
The out-of-pocket costs for MS drugs were 20 times higher in 2016 than in 2004, the study found.
In 2004, someone with MS taking the drugs looked at in this study would have paid an average of $15 a month (about $19 in 2016 dollars, taking inflation into account). They would have paid an average of $309 a month in 2016.
Callaghan said MS drugs “cost way more than the other medications we studied.” The study was limited to the five most commonly prescribed drugs for each condition, plus other high-cost drugs.
But the findings still seem to point to broader problems with drug affordability.
Bari Talente, executive vice president of advocacy at the National Multiple Sclerosis Society, told Healthline that the study’s findings were consistent with what they’ve heard from people with MS.
Talente said that several factors have been contributing to this trend.
They include rising prices of treatments, high-deductible plans becoming more popular, and copays being replaced with coinsurance, in which a patient pays a percentage of the cost rather than a flat amount.
That can add up to a lot higher out-of-pocket costs when the treatment in question is expensive.
“Where an individual previously paid a set amount — that was typically well under $100 — now people with MS are expected to pay several hundred, sometimes thousands, of dollars a month for their MS disease-modifying treatment,” Talente said.
Her organization has also studied the issue. It’s found similar skyrocketing costs.
A committee set up in 2015 came back with recommendations urging limiting price increases for existing drugs, limiting some out-of-pocket costs, and improving transparency in how prices vary from place to place.
But slowing this trend may be difficult.
“Not much is being done,” Callaghan said. “These costs will continue to rise as high-deductible health plans increase and medication costs increase.”
He added that this is complicated by the fact that physicians typically don’t know how much a certain treatment will cost a patient, so it’s difficult for them to take cost into account.
“Physicians also don’t have patient-specific out-of-pocket cost information available when advising patients,” Talente said.
Talente framed the problem as having to do with multiple factors, all of which would need to improve.
“The system needs to change,” she said. “It needs to focus on getting people the care and treatment they need to stay as healthy as possible so they can live their best lives. Every single party in the prescription-drug supply chain needs to own their piece of the problem and make changes.”
She’d like several changes to the insurance side of the issue, including eliminating coinsurance — which she said can be as high as 40 percent.
She’d also like to see drug prices be based on “value to individuals and the healthcare system” and to address the rise in prices for medications that have already been on the market a long time.
Related to that, she’d like to see generic drugs enter the market more quickly and to eliminate barriers that might be slowing that down.
Talente would also like to see a move away from high-deductible insurance plans.
It may seem counterintuitive that someone with a serious and expensive condition such as MS would have a high-deductible plan, knowing they’ll likely have to pay a lot for medical care.
But those plans are being used more and more across the board.
And research has found that most Americans either can’t or don’t shop around for better plans.
Horror stories abound of people with these plans stuck paying thousands of dollars a year for health costs — despite having health insurance.
Talente noted that for many people with MS, getting treatment early as well as having treatment on an ongoing basis is critical for limiting the disease’s impacts.
High-deductible plans, contrary to their purpose as health insurance, stand in the way of such coverage for these patients, she said.
“For people with chronic illnesses like MS, high-deductible health plans are a barrier to them getting the care and treatment they need to stay as healthy as possible,” Talente said.
The financial cost of having a neurological disease such as Parkinson’s or multiple sclerosis has skyrocketed over the past 20 years, a new study has found.
Researchers mostly blame the increasing use of high-deductible insurance plans, which typically offer cheaper premiums than more traditional plans but much higher deductibles.
That can mean someone with a serious condition might end up paying thousands of dollars a year for treatments they often can’t live without. In years past, those out-of-pockets would have been a fraction of that for many people.