Neurology on the Hill: My Role as an Advocate for Neurology

Ashley Aaroe, MD

A prior authorization response inched out of the fax machine — denied due to an illegible scribble on page 4. An electronic message popped up from a patient reporting a breakthrough partial seizure over the weekend. They had rationed out their antiepileptic, taking it every other day to try to make it last longer due to the high copay. The phone rang, signaling the beginning of an hour-long call bouncing between various pleasant but very disengaged voices, and explaining to each in turn why a coresident ordered an MRI. While I learned medicine predominantly in the hospital, the resident clinic was my introduction to being a doctor. I was worried.

Dealing with the health care system felt like I was scrambling to patch leaks in a very old, very large ship. I had no control over the ship’s bearing. I had no sense of whether a new boat would ever be built, or if there were enough life vests aboard for those who needed them. I did not think I could do anything else but solve problems on my very tiny scale - leak by leak, patient by patient — and hope someone else eventually figured out how to steer us better. Attending my inaugural Neurology on the Hill (NOH) as a resident in 2018 was like being invited above deck for the very first time.

A slide at the beginning of the meeting that year featured a picture of someone I vividly remembered from childhood. His name was Bill — ‘just a bill, sitting on Capitol Hill’ - from Schoolhouse Rock. I never would have thought back in elementary school that I’d stand in front of those steps myself, side by side with hundreds of neurologists in green scarves and bow ties, feeling empowered to create change. From that beginning, I started on an advocacy journey, learning about lobbying and public policy. This year I attended NOH again as a junior neuro-oncology fellow. I was able to develop my voice as an advocate, dig deeper into issues affecting our field and our patients, and take more of an active role in discussing these issues with policymakers.

This year, the American Academy of Neurology prioritized 3 issues, all of which affect patients and providers across medicine but have a disproportionate impact on neurology. The first issue — rising drug costs – hits particularly close to home for my subspecialty. A few weeks after starting fellowship, I learned from our clinic pharmacist that the cost of Lomustine (also known as CCNU, a medication commonly used for gliomas) increased by over 1000% from 2013 to 2018.¹ I saw first-hand how this led to considerable financial strain, and how sometimes patients were tempted to skip or delay treatment as a result.

While it makes intuitive sense that rising costs make it more challenging for patients to adhere to their medication regimens, this had not been fully described in patients with neurological conditions until a recently published article in Neurology.² The association between out of pocket drug costs and medication adherence was explored in patients with neuropathy, dementia, and Parkinson disease. For neuropathy and dementia, an increase in drug cost of $50 was associated with lower medication adherence. This is particularly significant as it has been shown that out of pocket drug costs in multiple sclerosis, epilepsy, neuropathy, dementia, and Parkinson disease are on the rise.³

Ashley Aaroe, MD and her neurology colleagues stand with Senator Ted Cruz during the Neurology on the Hill event in Washington, DC.

On Capitol Hill, we asked for simplification of Medicare Part D. Without endorsing specific legislation, we recommended that out of pocket costs be capped at $3100 or lower for Medicare beneficiaries. As a point of comparison, in 2019 this catastrophic coverage threshold had increased to $6,350. As the relative rarity of many neurologic conditions increases the vulnerability of our specific patient population to rising drug costs, continued advocacy efforts on this topic are critical.

Our second talking point pertained to maintaining National Institutes of Health (NIH) funding for disease research and drug development. As an advocate for rare genetic disease put it at my first NOH, while we stood in line for coffee in a tunnel below a Senate building, “I don’t think anyone really dislikes the idea of supporting research that could heal the sick — but sometimes things get lost in the shuffle.” While broadly funding the NIH is important, we also specifically advocated for funding the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative. The BRAIN Initiative is a multidisciplinary collaboration launched in 2013, and federal funding for it has grown steadily since, funding a variety of neuroscience research projects across the country. Our delegation from Texas met with Senator Ted Cruz this year, and I was particularly struck by how he engaged in a dialogue with me about the importance of NIH funding during our visit. It gave me hope that our lawmakers are listening thoughtfully about what we need to take care of our patients.

The last issue we discussed was possibly the most specific, and also at risk of being the most potentially inaccessible to lawmakers. Over the 2 times that I’ve attended NOH, we have addressed the regulatory burdens imposed on physicians by the prior authorization process in different ways. This year, we discussed supporting house bill HR.3107 Improving Seniors' Timely Access to Care. A provision of this bill would implement electronic prior authorization processing for Medicare Advantage patients. While explaining the prior authorization process is only marginally less time consuming and frustrating than completing an actual prior authorization, we were able to impress upon lawmakers that decreasing regulatory burden with such measures will mitigate physician burnout and improve patient care. The bill has bipartisan support, is not actively opposed by any insurance organization, and is projected to be budget neutral.

While drug pricing, research funding, and regulatory burdens do not solely affect neurologists and patients with neurological conditions, they affect our field in unique and complex ways which I continue to learn about during each step in my training. Being able to speak with members of my delegation as we prepared for our Hill visits gave me a sense of the diversity of experiences we have. We cannot expect that those outside our field implicitly understand the challenges facing it — we all have to speak up! For my part, participating in these trips to Capitol Hill has changed me. I don’t feel like just a trainee anymore, along for the ride aboard our health care system as it currently functions. I feel like I can look out over the horizon and help decide where we should go in the future. I feel like a real doctor.

Ashley E. Aaroe, MD, is a first year neuro-oncology fellow at MD Anderson Cancer Center. She received her medical degree from the Northwestern University Feinberg School of Medicine and completed residency at NewYork-Presbyterian Weill Cornell Medical Center. Her interests include clinical research, advocacy, and medical education.

REFERENCES

1. Peter Loftus. “Cancer Drug Price Rises 1,400% With No Generic to Challenge It.” The Wall Street Journal. 2017. wsj.com/articles/cancer-drug-price-rises-1400-with-no-generic-to-challenge-it-1514203201

2. Reynolds EL, Burke JF, Banerjee M, et al. Association of out-of-pocket costs on adherence to common neurologic medications. Neurology. Published online February 19, 2020. doi: 10.1212/WNL.0000000000009039

3. Callaghan BC, Reynolds E, Banerjee M, et al. Out-of-pocket costs are on the rise for commonly prescribed neurologic medications. Neurology. 2019;92(22):e2604-e2613. doi: 10.1212/WNL.0000000000007564