A person battling multiple sclerosis spent an average of $750 in out-of-pocket fees on medicines in 2012, but by 2021 that same patient spent $2,378 annually, a new report finds.
Out-of-pocket costs for drugs for neurologic diseases such as MS, Parkinson's and Alzheimer's disease are climbing sharply, according to research led by Amanda Gusovsky, of Ohio State University in Columbus.
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“In some cases, the out-of-pocket cost to patients has increased much more than the total cost of the drug, indicating that patients are taking on a disproportionate amount of the burden of these cost increases,” Gurovsky noted. Her team published its findings Oct. 30 in the journal Neurology.
They pored over data from a large private health care claims database, looking for changes in the cost to patients of meds for five different neurological conditions from 2012 through 2021.
In total, they looked at data for about 186,000 people with epilepsy, 169,000 with peripheral neuropathy, nearly 61,000 with Alzheimer’s or other dementia, close to 55,000 with MS and about 46,000 with Parkinson’s disease.
MS patients faced the sharpest upticks in out-of-pocket costs, more than tripling over the nine years of the study.
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“MS medications costs remain exceptionally high and pose a substantial financial burden to people with this devastating disease,” Gusovsky said in a journal news release. “It’s imperative that we develop policy solutions such as caps on costs, value-based pricing and encouraging production of generic drugs to address this issue.”
Generics could make a difference: The study found that when new generics emerged on the market, that could cut the cost of some drugs by 48% to 80% within a year.
Still, high deductibles and co-pays meant those savings didn't always reach patients, Gusovsky said.
In many cases "where generic drugs were introduced and the overall costs went down, the out-of-pocket costs to patients did not decrease, so they were not benefiting from these reductions," she noted.
The hit to patients' wallets can have a direct impact on their care and their health, the researchers warned. Many studies have shown that as prices rise, patients can start skipping meds, foregoing groceries or other essentials and incurring the stress of medical debt.