Out-of-Pocket Costs for MS, Other Neurology Meds, Soar

Damian McNamara

May 20, 2019

Out-of-pocket costs for drugs used to treat neurologic diseases including dementia and Parkinson's disease (PD) have increased exponentially over the past 13 years with the most dramatic increase for multiple sclerosis (MS) medications, new research shows.

Investigators found that average out-of-pocket costs for patients on MS drugs were 20 times higher in 2016 than they were in 2004.

"Neurologists need to be aware of costs when making treatment decisions and when having discussions with patients about options," lead author Brian C. Callaghan, MD, assistant professor of neurology at the University of Michigan in Ann Arbor, told Medscape Medical News.

The study was published online May 1 in Neurology.

National Data

The research is the first to evaluate nationally representative data from a private insurer focusing on major neurology conditions and out-of-pocket medication costs.

"Given the high costs of many neurologic medications and the increasing cost sharing by patients, the total cost burden carried by patients is likely increasing," the researchers note. "Yet the magnitude of this burden is not well-quantified."

The investigators assessed a database of de-identified patient information for 73 million United Healthcare subscribers. In addition to MS medications, they examined how much neurology outpatients paid in insurance deductibles and co-pay costs for peripheral neuropathy, epilepsy, dementia, and PD.

The investigators evaluated the five most commonly prescribed medications for each condition, as well as some other high-cost treatments.

The eight medications for MS included teriflunomide, peginterferon-β-1a, interferon-β-1b, interferon-β-1a (Rebif), interferon-β-1a (Avonex), glatiramer acetate, fingolimod, and dimethyl fumarate. They evaluated mean out-of-pocket costs and mean estimated total costs for a 30-day supply of each agent.

The study included 105,355 patients with MS, 314,530 with peripheral neuropathy, 281,073 with epilepsy, 120,720 with dementia, and 90,801 with PD.

The median monthly out-of-pocket cost for MS medications increased from $14 (interquartile range, $10 - $16) in 2004 to $59 ($32 - $301) in 2016.

With the exception for interferon-β-1a, total out-of-pocket plus insurance payment monthly costs for MS medications remained stable over time. This was particularly true from 2013 to 2016, when the total monthly mean cost was $4,527 (SD, 5th to 95th percentile, $3,899 - $6,046).

Similarly, monthly out-of-pocket and totals costs for many epilepsy agents — topiramate, levetiracetam, lamotrigine, divalproic acid, and carbamazepine — remained stable from 2010 to 2016. Carbamazepine was an exception, with rising costs between 2014 and 2016.

Although total monthly costs for the anti-epileptic drug lacosamide held steady since 2009, the researchers found the proportion of costs paid by patients rose steadily since 2010.

Data on Pain, Dementia Meds

Many drugs for peripheral neuropathy were available in generic form during the study period. As a result, amitriptyline, nortriptyline, and gabapentin had low monthly out-of-pocket and total costs.

In contrast, pregabalin was only available as a brand medication and underwent a sharp rise in monthly out-of-pocket costs from 2014 to 2016. At the same time, total costs remained stable.

Once venlafaxine was available as a generic, the monthly out-of-pocket and total costs decreased after five years to become similar to the tricyclic antidepressants.

Although the monthly out-of-pocket and total costs for duloxetine, a tricyclic antidepressant commonly used to treat neuropathic pain, also dropped in the three years after generic versions became available, costs for it "remained substantially more than other generic medications in this class."

Total monthly costs for dementia drugs remained stable for memantine, rivastigmine, and galantamine during the study. However, monthly out-of-pocket costs for rivastigmine and galantamine increased from 2014 to 2016.

Donepezil and memantine total costs were likewise stable until 2010 and 2014, respectively, after which newly available generic versions resulted in reduced out-of-pocket costs for patients.

Total monthly costs for PD medications carbidopa-levodopa and amantadine remained low during the study years. The generic effect was observed with ropinirole and pramipexole, with total costs dropping "precipitously" after 2007 and 2010, respectively, the researchers note.

The total costs for rasagiline remained stably high throughout the study, with out-of-pocket costs rising from 2014 to 2016.

Monthly out-of-pocket costs for ropinirole and pramipexole likewise decreased following generic approvals, but the investigators estimated it took 5 to 6 years before these costs were comparable to carbidopa-levodopa.

Monthly out-of-pocket costs for pramipexole and amantadine also increased from 2014 to 2016.

Lowdown on High Deductible Plans

When investigators evaluated how high-deductible insurance plans contributed to patient costs, they focused on epilepsy and MS. They only assessed years 2006 to 2016 because high-deductible plans were not common in 2004 or 2005.

For patients with MS and a high-deductible insurance plan, monthly out-of-pocket costs were $661 (SD, 5th to 95th percentile range, $0 - $2,631) in 2016. At the same time, the costs were $246 ($0 - $1,211) for those not in high-deductible health plans.

For individuals with epilepsy in high-deductible health plans, monthly out-of-pocket costs were $40 ($0 - $158) in 2016 compared with $18 ($0 - $58) for those not in high-deductible plans.

"Patients in high-deductible health plans are particularly vulnerable to high out-of-pocket costs," the researchers note.

"Neurologists need to be aware that these costs can be different from one neurologic disease to another," the investigators write. They cite the example of mean cumulative costs for people with MS emerging 10-fold higher compared with epilepsy — $2,238 vs $230 after 2 years.

"Therefore, patients with MS are more likely to want to discuss cost implications of their medications, and neurologists will need to be increasingly prepared for these conversations," the researchers note.

The investigators also call for neurologists to have better patient-specific information about medication costs at the point-of-care.

"Currently, even well-informed neurologists will have trouble helping patients navigate their out-of-pocket expenses given the limitations in data available to them when making treatment decisions," they write.

Going forward, Callaghan plans to look at one of the potential clinical implications of increasing out-of-pocket medication costs. "We are studying the impact of out-of-pocket costs on medication adherence in these neurologic conditions," he said.

Choice-Limiting Effect

Commenting on the MS findings for Medscape Medical News, Kathy Costello, MS, CRNP, MSCN, associate vice president of healthcare access at the National MS Society in New York City, noted that today's MS medications can be "life-changing" for many patients.

"They have been shown in well-designed clinical trials and in practice to reduce the number of relapses that people experience, limit new inflammation and damage, and positively impact worsening.

"With more than 15 disease-modifying therapies on the market, many with differing mechanisms of action and administration, the decision on an appropriate and effective therapy should rest with the MS provider and the person living with MS," she said

However, out-of-pocket costs associated with these agents "have risen so much that access is not possible for many — and this limits the choices that people should have to best control their MS," Costello added.

The American Academy of Neurology Health Services Research Committee funded the research. Callaghan receives grants from the National Institutes of Health and the Veterans Administration, as well as research support from Impeto Medical Inc. He also serves as a consultant to Advance Medical and the Immune Tolerance Network. Costello disclosed no relevant financial relationships.

Neurology. Published online May 1, 2019. Abstract

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