Soaring Neurology Drug Prices: How Clinicians Can Help

Nancy Melville


February 15, 2019

With the perfect storm of high-deductible health plans becoming the norm, limited availability of drug discounts, and prices for multiple sclerosis (MS) drugs soaring, some patients with worsening symptoms may be in more troubling situations than neurologists even realize.

But while the guidance needed to navigate the twisted maze toward affordable treatment will typically require outside parties, healthcare providers nevertheless have opportunities to make a big difference in getting their patients on the right course of affordable treatment.

Figure 1. Brian Callaghan, MD.

"The good news is there are increasing neurologic drugs, but the bad news is that many are extremely expensive and high-deductible health plans are increasing," said Brian Callaghan, MD (Figure 1), an associate professor of neurology at the University of Michigan in Ann Arbor, in discussing the pressing situation of high neurology drug costs at last month's annual meeting of the American Neurological Association.

"And there is a huge discrepancy (in health plans) from patient to patient, so it's not enough to know what medicine you're prescribing," Callaghan noted. "You actually have to know about a patient's insurance if you want to get a handle on how much out-of-pocket they will have to pay."

Neurology Drug Spending Among the Highest in Medicine

At the root of the problem is the fact that, although increasing drug costs are hitting every specialty hard, in neurology the toll is disproportionately high. With annual spending of just under $5 billion, neurology is the fourth highest specialty for Medicare drug expenses, behind only internal medicine ($26.9 billion), family practice ($22.3 billion), and nurse practitioners ($6.6 billion), according to a study of Medicare Part D payments from Callaghan and colleagues.[1] Given that this study reflects 2013 data, the numbers can be expected to be even higher now.

Importantly, however, there were only about 13,000 neurologists, compared with approximately 100,000 each in the other three categories, meaning that the spending per patient was substantially higher than in the other fields.

"In neurology, we are a bit of an outlier in terms of the expensive medicine we prescribe," Callaghan said.

Figure 2. Ruth Whitham, MD

MS drugs account for most of the spending. At $1.8 billion, MS drugs made up five of the top eight neurologist-prescribed drugs, including the top seller of glatiramer acetate (Copaxone; Teva) at number 1, with as much as $820 million in drug payments, according to data from 2017 presented in the session[2] by Ruth Whitham, MD (Figure 2), a professor of neurology at the OHSU Multiple Sclerosis Center, Oregon Health & Science University, in Portland, Oregon.

Antiepileptic drugs were second highest for prescriptions by neurologists, accounting for $499 million, or 12.1% of total payments for drugs prescribed by neurologists.

Meanwhile, as prices continue to rise with the introduction of new disease-modifying therapies—which can cost upward of $80,000 per year—there have been matching increases in older drugs already on the market, a troubling trend known as "shadow" or "sticky" pricing, Whitham said.

"This reflects the idea that when a new agent is introduced it may be priced about 30%-50% higher than previous drugs, and then the other drugs on the market will catch up."

Financial Challenges Can Be Particularly Consequential in MS

The effects of the drug costs on patients were demonstrated in a 2015 survey from the National Multiple Sclerosis Society.[3] In looking at 8778 patients, the report found that only 30% said they had no issues in affording their MS medications, whereas 40% received financial assistance through patient assistance programs, and more than half (53%) reported that it was somewhat or very difficult to afford their medication.

As many as 17% reported having to skip doses or stop treatment due to costs. For these patients, this can mark the moment when the inability to afford drugs truly becomes a medical problem, landing them back in the doctor's office as conditions worsen.

"The risks (of discontinuation) are usually in losing the drug's benefit, which, in the case of MS, is disease progression," Callaghan told Medscape Medical News.

Potential risks in stopping MS drugs were further underscored in a safety announcement issued November 2018 by the US Food and Drug Administration[4] warning that, in rare cases, stopping the drug fingolimod (Gilenya; Novartis AG) could have even more severe and permanent worsening of disease activity.

"It is hard to know whether this (effect) is something specific to Gilenya or not, and whether this is more than losing the benefit or an actual harm from discontinuation," Callaghan commented.

Discounts Don't Always Cut It

Drug discount programs, including rebates and copay programs, can offset the costs substantially. Sandoz, for example, offers a copay program of up to $9000 in annual support for its generic glatiramer acetate drug Glatopa.

But in addition to being associated with a host of controversial issues—as detailed in a July 2018 article in The New York Times —the discount programs do not apply to everyone.

Among those ineligible for assistance are patients on Medicare and Medicaid, due to the Federal Anti-Kickback Statute, which prohibits pharmaceutical companies from providing cost-share assistance to beneficiaries of government-subsidized health plans.

With an estimated 25%-30% of patients with MS on Medicare, including younger patients who are on Medicare due to medical disability, the impact of this can be considerable.

Figure 3. Bari Talente

"We do hear from people with MS that the transition to Medicare can be very challenging because the same level of patient assistance is not available," said Bari Talente (Figure 3), executive vice president of Advocacy for the National MS Society.

"There are a handful of nonprofit assistance programs that provide financial assistance, but they are usually capped at $5000, and for much of the year the programs are out of funds to help new enrollees."

"To receive help, a person may have to call each program every day to see if any assistance is available. When these programs do get funding in, they often close again within 24 hours because all the money is gone."

And the barriers to assistance extend beyond Medicare, Nicholas Elwood Johnson, MD, chair of the American Academy of Neurology's (AAN's) Government Relations Committee and a fellow of the AAN, told Medscape Medical News.

"Even privately insured patients face uncertainty as these programs operate subject to funding availability," he said. "Assistance coverage gaps can leave patients exposed to unaffordable out-of-pocket expenses, which may impact access to needed treatments."

Furthermore, the introduction of "copay accumulator" programs by some pharmacy benefit managers is another tool being used in private insurance products that only wind up exposing individuals to more of the drug's cost, Johnson added.

"In short, nearly all patients are affected by the high price of therapies."

'Time-consuming and Exhausting for All'

The process of getting approval for the most medically appropriate MS drug, then getting the drug approved by insurance or Medicare, and then looking at ways to make sure the patient can afford it can be time-consuming and exhausting for all involved, without any guarantee of a successful outcome," Whitham said.

"I would say we are successful more often than not, but there are plenty of anecdotes of disappointing situations in which the patient is not taking the MS drug that we thought best based on medical factors alone."

Meanwhile, for patients grappling with MS—a disease that can compromise their physical as well as cognitive stamina—"time-consuming and exhausting" can be substantially more challenging, Talente, from the National MS Society, added.

"People with MS often times experience debilitating fatigue and/or cognitive challenges," she said.

"This may make it more difficult for them to follow through with outreach to an assistance program and completing an application process."

How to Help Patients Navigate Their Treatment and Assistance Options

While many aspects of the process are out of clinicians' hands, the experts say that there are some important proactive steps they can take to help their patients navigate the sometimes daunting path toward getting the medications they need for a price they can afford.

Pay attention to patients' plans. "[One way] physicians can help patients with is knowledge of their deductible," Callaghan said. "For instance, medications are now starting to be included in patients' deductibles. Therefore, early in the year a medication may be expensive, but after hitting the deductible, it may become much cheaper. Physicians can help patients navigate the complex health system, but only with good communication," he said.

Callaghan noted that including patients' out-of-pocket expenses on medical records could be key in helping facilitate the process.

"I also strongly support mandating that insurance companies and health systems provide patient out-of-pocket information in the electronic medical record," he said. "Patients and physicians should know in real time how much something will cost. This information would greatly facilitate these conversations and lead to better choices and care."

Team with a clinical pharmacist for expertise and advice on drugs and their costs. "Clinical pharmacists are more commonly used in MS clinics now, and this has shifted some of the burden of cost/approval from the neurologist to them," Whitham said.

"This is a good thing because clinical pharmacists have the knowledge base, training, and job description to make a successful outcome for the patient more stream-lined and more likely."

Don't assume discounts, etc, are solving the problem. The discounting of an $80,000 drug to just $8000 may seem substantial, but for the patient living paycheck to paycheck, and possibly seeing those paychecks diminished or even eliminated as a direct result of their illness, a $2500 copay on that $8000 can be just as out of reach.

"Everyone's financial situation is different, so any cost has the potential to make it unaffordable to patients," Callaghan advised. "Patients rarely discuss this information with physicians and often do not know how to navigate the process of discounts, etc."

Consider generics, when available and appropriate. "Picking medications in the same therapeutic class that are generic, (for instance) gabapentin instead of pregabalin, is very helpful," Callaghan said. A caveat with generics, however, is that they are not as widely available for MS drugs as other drug classes.

"Unfortunately, it usually takes 5 years and many generic competitors before medications drop in cost," he explained. "Biosimilars are rare, and even when they occur, there are few competitors. This is the reason that we have no cheap MS drugs despite 25 years passing since they came out."

Infusion centers. Various safety and other factors may require MS infusion therapy to be administered in the hospital, particularly the initial infusions. But, in some cases, outpatient facilities with infusions delivered by nurses can be used and reduce the cost by thousands.

For more information, clinicians can direct patients to the National Infusion Center Association, a nonprofit patient advocacy organization that offers an online Infusion Center locator. This can help patients locate centers throughout the United States that administer IV/injectable medications. The association also provides consumer education with extensive information on infusion services.

Additional resources. Critical information that clinicians can offer to MS patients struggling to afford medications include the National MS Society's MS Navigator tool, which provides information and assistance. Also included on the society's website is an important page on financial assistance, which provides an extensive directory to drug assistance programs.

Being vocal. Finally, experts agree that one of the most important steps neurologists can take to help their patients is to get the word out, particularly to policymakers, of the struggles their patients are encountering.

"Neurologists should tell their patients' stories about drug costs to anyone who will listen and has the power to create change," Whitham said.

A Call to Arms

Beyond the measures that healthcare providers can take, the National MS Society, through its initiative Make MS Medications Accessible , provides a call to arms to the collective community of all parties involved, from patients and healthcare providers, to pharmaceutical companies, insurance providers, and policymakers, to join forces and "focus on getting people with MS the medications they need to live their best lives."

"No single stakeholder has all the solutions; we can only find the solutions together," they assert.

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