AAN Blasts 'Runaway' Neurology, Other Prescription Drug Costs

Kelli Whitlock Burton

October 12, 2021

A new position statement from the American Academy of Neurology (AAN) and other organizations warns soaring prices for neurologic and other prescription medications is leading to rationing of care and diverting clinicians' time from the clinic to insurance bureaucracy.

This situation is also taking a toll on neurologists' mental health, who already have the second-highest burnout rate across medical specialties, the statement adds.

The statement was published online October 4 in Neurology.

Dramatic Price Increases

Drafted by the Ethics, Law, and Humanities Committee — a joint committee that includes the AAN, the American Neurological Association, and the Child Neurology Society — the statement was prompted by a 2018 report from the AAN Neurology Drug Pricing Task Force to address challenges associated with high drug costs.

It highlights ethical concerns from high drug costs, policy proposals that might temper the problem, and how clinicians can adjust to the current reality of pharmaceutical pricing and better advocate for changes to the healthcare system.

"Runaway drug costs continue to be a pressing problem with recent dramatic price increases not only for specialty drugs, but also generic ones," lead author Amy Tsou, MD, MSc, co-director of the ECRI Evidence-Based Practice Center at the Center for Evidence and Guidelines in Plymouth Meeting, Pennsylvania, told Medscape Medical News.

She noted that 1 in 4 Americans has difficulty paying for medication, and many report going without a medication because of cost.

"Ensuring a fair system for drug pricing and coverage rules that balance the goods of individual patients with the needs of broader populations when resources are limited remains more important than ever," Tsou said.

Out-of-pocket costs for neurologic medications have risen dramatically over the past decade, with the fastest rise reported among drugs for multiple sclerosis. Results from a study published in 2019 showed that between 2004 and 2016, patients' out-of-pocket expenses skyrocketed from $15 a month to $309 a month.

The steep increases have forced some neurology patients to ration their medication or stop taking it altogether, which is one of the ethical concerns cited in the AAN statement.

Patient Self-Rationing

Commenting on the statement for Medscape Medical News, Ilana Katz Sand, MD, associate director of the Dickinson Center for Multiple Sclerosis at Mount Sinai Medical Center, New York City, noted that clinicians are already acutely aware of the effect high drug costs have on their patients' medical decisions. However, statements such as the current one bring much-needed outside attention to the problem.

"I've definitely had more and more people struggling with deductibles and co-pays, even among people who are insured," said Katz Sand, who was not involved with the AAN paper.

She has a number of patients who have rationed their medication or stopped taking it altogether when their co-pays increased or they lost access to a co-pay assistance program because their insurance company chose to cover a still-expensive generic drug with no assistance program over a slightly costlier brand-name medication that comes with patient discounts.

Too often, patients don't tell her they're not taking their medication as prescribed. At a recent appointment, Katz Sand learned about a patient's drug rationing only after a routine MRI showed new brain lesions that regular treatment might have prevented.

Another patient, new to her clinic, questioned the treatment plan Katz Sand recommended because they could not cover the co-pay. This sort of self-rationing happens in patients with and without insurance, she added.

"It's a terrible thing and it's happening to all patients," Katz Sand said, adding that the old credo of 'Yeah, the drug prices are high, but they are covered by insurance' is not a sustainable argument anymore."

What Neurologists Can Do

Some sort of rationing is an unavoidable outcome of steep treatment costs, the authors note. But what does that mean in clinical practice?

Neurologists should be aware of the costs involved in ordering diagnostic tests, treatment, or medication — and shouldn't feel compelled to order treatments or tests that they feel are medically inappropriate just because a patient requests them, the authors write.

The statement also encourages clinicians to include financial realities in the shared decision-making process with patients.

However, Katz Sand said that is not always possible. Drug prices aren't fixed, with different insurance plans offering different pricing, deductibles, and co-pays.

"It's hard for us to attempt to incorporate discussions about price in our discussions with patients when we can't even predict what their out-of-pocket cost is going to be," she said.

"Every single prescription we write requires prior authorization, and that's directly related to the fact that the cost of these drugs is so high," she added.

As do many other clinicians, Katz Sand spends hours each week on preauthorization forms and haggling with insurance companies on behalf of her patients. To get needed medication at a cost they can afford sometimes takes creative problem-solving and almost always takes a lot of time.

"It all adds to the administrative burden, patients' stress, and our stress," she said.

Physician-Advocates Needed

The AAN paper identifies a number of policy reforms to address drug pricing at a national level, including giving Medicare officials the power to negotiate drug prices, allowing the safe importation of drugs from other countries, and speeding the FDA approval process for generic drugs.

There is also a need to address systemic problems that, the authors note, help create and perpetuate healthcare disparities.

Lawmakers at the state and federal level are considering a number of these policy ideas and others that could address the kinds of issues Katz Sand described. However, the chances of their success are slim at best, Bruce H. Cohen, MD, chair of the AAN Advocacy Committee and director of the NeuroDevelopmental Science Center at Akron Children's Hospital, Ohio, told Medscape Medical News.

"On a federal level, we're watching in real time how the entrenched divisions, even within parties, are resulting in continued stalemate," said Cohen, who is not one of the statement authors.

Those ideas need advocates and the AAN paper suggests neurologists should be among the ones championing these changes, he added.

"One of the most effective strategies is to bring attention to the impact high drug costs have on neurology patients and medical practices," Cohen said. "It's so important to make sure policymakers know the significant impact of high drug costs in neurology and within the context of finite resources."

One way to do that is to share statements such as the current one with members of Congress working on policy reform, Cohen said. Another is through programs such as the academy's annual Neurology on the Hill conference.

A third strategy is to encourage individuals such as Katz Sand to speak out when and where they can, he added.

While she agrees with the idea, finding time for advocacy work amid patient care, administrative work, and research is challenging. Katz Sand would like to see groups like the AAN work with healthcare institutions to implement policies that allocate time and resources to train clinicians in advocacy — and then support their efforts on that front.

"I'm really glad they wrote this and think they did a good job of crystallizing the issues," Katz Sand said. "It's good to put it out there as a document that could help serve as the basis for the requests we make collectively. I just hope that people listen."

The paper received no funding. The authors have disclosed no relevant financial relationships. Other disclosures are fully listed in the original article.

Neurology. Published online October 4, 2021. Full text

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