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Out-of-pocket costs for prescription drugs to treat neurological disorders rose dramatically from 2004 to 2016, with multiple sclerosis (MS) medications showing the fastest increase, according to an analysis of private health insurance claims.

The average out-of-pocket costs for people taking MS drugs soared 20-fold over the study's 12-year period, reported Brian Callaghan, MD, MS, of the University of Michigan in Ann Arbor, and colleagues.

Expenditures for dementia, epilepsy, peripheral neuropathy, and Parkinson's disease drugs also increased considerably, particularly for patients with high-deductible health plans, they wrote in .

"Out-of-pocket costs have risen to the point where they can no longer be ignored by neurologists," Callaghan said.

"Neurologists can choose medications that are likely to have smaller out-of-pocket costs, such as those that are generic," he told 番茄社区. "Unfortunately, they rarely get precise out-of-pocket cost information at the point of care, which limits their ability to give patient-specific advice."

Rising MS drug costs have been a particular concern in recent years, especially as the number of new MS drugs has exploded. In 2015, the National Multiple Sclerosis Society (NMSS) and found that 40% said they faced challenges related to the cost of MS treatment, insurance, or care. And a led by Guoqiao Wang, PhD, of Washington University in St. Louis, reported that 6% of MS patients did not use disease-modifying treatments (DMTs) because of insurance or financial reasons. Of those who used DMTs, nearly 25% relied on support from free or discounted drug programs.

"The financial burden of DMTs also reduced the ability of persons with MS to adhere to therapy as manifested by skipping doses," Wang, who was not involved with the current research, told 番茄社区. "As the costs for DMTs continue to rise, it's likely that more MS patients will not be able to take the drugs, or have to rely on partial support, or become non-adherent. That will eventually reduce the benefit from these therapies."

Medications prescribed by neurologists represent a big chunk of national drug costs: they accounted for $5 billion in Medicare Part D payments in 2013, among specialties. As new drugs like biologics for migraines become available, neurology drug costs may rise and especially affect patients with high-deductible health plans, Callaghan and colleagues noted.

In this study, they evaluated claims of more than 912,000 people insured by United Healthcare who had one of five neurological conditions -- multiple sclerosis, dementia, epilepsy, peripheral neuropathy, or Parkinson's disease -- from 2004 to 2016.

For each condition, they looked at the top five most commonly prescribed medications by neurologists, plus all FDA-approved MS medications, as well as lacosamide (Vimpat) for epilepsy, and venlafaxine (Effexor brand and generic) for peripheral neuropathy. The primary outcome was the mean out-of-pocket cost for a 30-day supply of medication, including co-pays and deductibles.

The fastest rise in monthly out-of-pocket costs occurred with MS drugs, which climbed from $15/month in 2004 to $309/month in 2016. Cumulative 2-year out-of-pocket costs for MS patients were an average of $2,238, which varied considerably from patient to patient: 5% of MS patients paid an average of $90, while another 5% paid $9,855 or more.

Expenditures also varied widely from condition to condition. Cumulative 2-year out-of-pocket costs for epilepsy patients were an average of $230, for example, about one-tenth that of MS drugs.

Out-of-pocket costs for brand name medications for other neurological conditions also rose considerably. Patients in high-deductible health plans incurred about twice the monthly out-of-pocket expense compared with patients not on those plans: $661 versus $246 for MS drugs, and $40 versus $18 for epilepsy, in 2016.

While these expenses are steep, MS drug costs can hit patients with government insurance even harder, noted Dennis Bourdette, MD, of Oregon Health and Science University in Portland, who was not involved with the research. For example, Medicare beneficiaries without low-income subsidies are expected to have annual out-of-pocket costs of this year.

"MS patients with private insurance are shielded from the rising cost of drugs because the pharmaceutical companies provide financial assistance to cover co-pays and other out of pocket expenses," Bourdette told 番茄社区. "However, patients are indirectly affected by the high costs because private insurance companies lower their costs by restricting coverage to a limited number of drugs based on the negotiated rebates they receive. Rising costs of drugs affect MS patients on Medicare Part D directly as their out-of-pocket expenses rise; by federal law, pharmaceutical companies are forbidden to provide financial assistance for patients on Medicare."

To address high neurology drug costs and drug-pricing policies, the American Academy of Neurology, which funded the study by Callaghan and colleagues, recently created a . The NMSS also has proposed recommendations about MS drug access.

"Medications should be affordable and the process for getting them simple and transparent," NMSS executive vice president of advocacy Bari Talente, JD, told 番茄社区. "We advocate across the board -- at the federal and state level, and across the supply chain -- to support those goals."

This study has several limitations, Callaghan and co-authors noted: it looked at drug costs for only five neurologic conditions and did not evaluate all drugs used to treat them. It did not include information from outside financial support programs like other insurers, pharmaceutical companies, or philanthropic donations. It also did not include people who did not fill an initial prescription because of cost.

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