INDIANAPOLIS (FRONTLINE MEDICAL NEWS) – Although nearly all patients with multiple sclerosis have some form of insurance, 25% of them receive some form of assistance from the pharmaceutical industry in covering the cost of their disease-modifying therapies. In addition, 22% report that their health insurance coverage worsened compared with the prior year.

Those are key findings from a fall 2014 survey of the North American Research Consortium on MS (NARCOMS), a registry with self-reported information on disease-modifying therapies (DMTs), including type, duration of use, changes and reasons for changes, as well as income, insurance, and disease status.

At the annual meeting of the Consortium of Multiple Sclerosis Centers, Guoqiao Wang, Ph.D., and his associates reported findings based on 6,662 (88%) of 7,601 NARCOMS participants who completed the Fall 2014 NARCOMS Update survey, including questions about their health insurance status and DMT choices related to insurance. Of those 6,662 respondents, 99% reported being insured in the prior 6 months, 69% reported that their insurance coverage was unchanged compared with the prior year, and 22% said that their insurance coverage worsened compared with the prior year.

Of the 4,156 (62.4%) respondents who were taking DMTs at the time of the survey, the following financial resources were used to pay for the agents: health insurance copay only (52.1%), free or discounted drug programs (25%), full coverage by health insurance (22.2%), and full payment by the patient (0.7%). Most of those who received assistance from free or discounted drug programs were female (86%), have had their disease for a mean of 7.6 years, tended to have the relapsing-remitting form of MS (71%), and had a median Patient Determined Disease Step of 3 (Gait Disability), suggesting a lower level of disability and most likely an earlier stage of the disease course.

Of the 2,108 (31.6%) respondents who were not taking DMTs, 77.7% did so by their own choice, 14.5% did so on physician recommendation, 3.8% did so because of insurance denial, 2.7% did so because of a higher copay, and 1.3% because of having no insurance.

“Although the proportion of participants who did not take DMTs due to insurance denial was low, the absolute number of participants was 80, which is relatively high,” Dr. Wang, a research fellow at NARCOMS, said in an interview. “We don’t consider that a small number. The free or discounted drug programs helped a lot of participants obtain DMTs at the relatively early stage of their disease, even those with health insurance. On the other hand, 77.7% of those who were not to taking DMTs had a median Patient Determined Disease Steps of 4, indicating a higher level of disability (using a cane or walking aid) and more likely at a later stage of the disease course. For some of these participants, they may have entered a secondary progressive phase, where there are limited options for DMTs. The contrast between these two groups of participants showed that the free or discounted drug programs not only helped them get access to DMTs, but seemingly also helped them to get DMTs earlier, and thus maximized the benefits of DMTs.”

Of the 398 (6%) respondents who changed their DMT over the 1-year time period studied, nearly half did so for insurance-related reasons, including denial by the insurer (22.4%), higher copay resulting in a decision to skip or split DMTs (12.8%), insurance change (8.3%), and higher copay resulting in a change of DMT (4.3%).

“It’s important for neurologists to know that while their patients are likely to have insurance, a deeper discussion on how they’re going to get their medications covered is warranted,” Stacey Cofield, Ph.D., deputy director of the NARCOMS Coordinating Center, based at the University of Alabama at Birmingham, said in an interview.

In a separate abstract presented at the meeting, Dr. Cofield and her associates reported results from the same Fall 2014 Update survey of 7,601 NARCOMS participants who addressed questions about their DMT status, changes to their DMTs, and how the decision to switch or continue was made. The researchers found that 42.8% of respondents shared decision making with their physicians or spoke with their physicians prior to making a treatment decision (38.8%). They also found that patients currently on a DMT were more likely to engage in shared decision making, compared with those who were not on a DMT (47.4% vs. 33.5%; P < .0001). Patient-centered decision making increased with current worse PDDS (P < .0001).

According to Amber Salter, Ph.D., of NARCOMS, about 3% of MS patients switch DMTs within a 6-month period ( Patient Prefer. Adherence 2014:8 971-9 ), a number that has been increasing in recent years for a variety of reasons. For example, a patient may want to switch from an injectable agent to an oral medication out of perceived convenience, not realizing that being on the oral agent may involve an increased number of office visits for blood testing during treatment, she said.

Difficulty can arise when the patient and the physician both agree on a DMT switch, but the patient’s health insurer says no. “The clinician’s best judgment is, ‘I’ve seen the MRI. There’s activity in the brain. I want to change to a different medication.’ But the insurance company says, ‘You don’t meet our criteria,’ ” said Gary R. Cutter, Ph.D., director of the NARCOMS Coordinating Center. “The patient doesn’t know what to do. The physician can fight [that decision by the insurer], can get involved in that battle. But that’s a different battle that not all physicians have the resources around to tackle. It can be a hassle for both the patient and physician.”

Dr. Cutter noted that MS patients who switch DMTs tend to do worse from a clinical standpoint. “If you look cross-sectionally at data, people who have switched end up with higher levels of disability, and it’s because the physician is reacting to something; it’s not that the drug they switched to is bad,” he said. “These drugs are not cures. They’re meant to slow the progression [of MS].”

NARCOMS is supported by the CMSC and the Foundation of the CMSC. Genentech provided additional support for the survey of treatment decision making. Dr. Cutter disclosed ties to several pharmaceutical companies. The other researchers stated that they had no financial conflicts to disclose.

On Twitter @dougbrunk


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