The Axon – Issue #3, June 2024
It is hard to believe we're already halfway through 2024, but it's not surprising that this first half of the year has been full of exciting news in the field of neurology! But, before we go any further...if this is your first time here, thanks for joining us! If you're a repeat reader of NeurologyLive? or The Axon, welcome back!
For the former, we're a team of editors for a clinical news publication that provides the latest coverage of neurology-related FDA news and the therapeutic pipeline, expert opinions and insights, in-clinic care and advocacy, and major medical meetings throughout the year. Our mission is to deliver?quality and relevant information to?health care professionals treating neurological diseases to help them achieve the best patient care possible. This newsletter is The Axon, your new go-to place to get that insight, right here on LinkedIn.
On the first of each month, we'll bring you a new edition that highlights the trending topics and important updates our editorial staff reports on. We'll point you to the news that matters and the specialist insight that can help your clinical practice.
Without further ado, let's get into what happened this past month!
SLEEP, AHS, and AMTRD
Several medical meetings take place in June each year, including a few of our favorites—the SLEEP annual meeting, put on by the American Academy of Sleep Medicine; the American Headache Society's annual scientific conference; and the PMD Alliance (Parkinson & Movement Disorder Alliance) / MedStar Georgetown University Hospital's Advanced Therapeutics in Movement and Related Disorders congress. Our team bounced around the country this month to be on the ground for as many of them as we could, and as a result, we got some excellent insight into the key data and trending topics being discussed in the hallways of these conferences.
SLEEP
The first of the bunch was SLEEP, taking place in Houston, Texas, from June 1-5. While down south, the team spoke with a number of presenters and experts in sleep disorder care, and gathered a ton of insight into how things have progressed in the last year. One big area of excitement was the development of new approaches to obstructive sleep apnea (OSA), which Kin Yuen, MD, a sleep medicine specialist at University of California, San Francisco, brought to our attention. OSA treatment success has been dogged by struggles with optimizing CPAP use among patients, but Yuen pointed out a few innovative approaches on the horizon, including the use of hypoglossal nerve stimulators and GLP1 agonists. To put it in her words, "there’s going to be a myriad of different treatment options available on the horizon. We used to say treatment for severe sleep apnea can be CPAP forever; however, nowadays, it’s not a life sentence anymore."
We also heard some striking data on the prevalence of sleep problems among children with neurodevelopmental disorders from Temitayo Oyegbile-Chidi MD, PhD, FAAN, FAES, FANA, a pediatric neurologist at the University of California, Davis, who explained that although up to 20% of children have sleep problems, among those with neurodevelopmental disorders that prevalence can rise to as high as 86%—nearly 4 times higher—marking it as a serious issue in need of attention.
Similarly, Anne Marie Morse, DO, FAASM—host of the Sleeping Around the Podcast—spoke with us about another need in sleep care: patient voices. Importantly, she noted the need to ensure that doctors use language that patients can understand and that they're listening closely during physician-patient interactions. She explained that "there’s a lot of underestimation of what individuals are actually experiencing. One of the things I’m passionate about is always personalizing therapies, and being able to understand that the words that individuals are using is critical because when I’m using my own words, I’m applying a lexicon that may not be relevant or even what the patient is actually saying."
We highlighted some of this conversation in a recent episode of our podcast, Mind Moments. Check it out here: Gaining Patient Perspectives on the Impact of Narcolepsy
AHS
This is also a challenge that emerges in other areas of neurology, including headache and migraine care. With a staggering patient population size (some estimates suggest up to 40 million individuals experience migraine in the US alone), migraine care can be a difficult area to draw generalizable conclusions about.
During the AHS annual meeting, held June 13-16, in San Diego, California, we spoke with Jessica Ailani, MD, of MedStar Georgetown University Hospital, about the need to effectively communicate with patients and understand the unique diagnostic and treatment journeys that they undertake. One way that she pointed out that clinicians can work to connect in this way is to participate in awareness activities. In her words, "Nobody really thinks of migraine as something to celebrate, but personally, I think celebrating the journey [patients have] been on [is huge]. To take a moment to share with others what they've gone through, and how far they might have come, but also, to talk to others who they might not realize have a headache disorder to share that there are [clinicians] they can see [is important]."
ATMRD
We wrapped up our travel this past month by heading to National Harbor, Maryland, from June 22-25, for the third annual ATMRD congress. And, unsurprisingly, that theme of patient communication sprung up once again—this time in a conversation with Kelly Papesh, DNP, APRN, the executive director of the Association of Movement Disorder Advanced Practice Providers. She and colleagues held a panel discussion at the meeting along with patients and care partners to discuss their experiences with effective communication and how it can impact treatment outcomes, including tips on how clinicians can more effectively prompt patients for the right information and create a safe space for sharing, in addition to other alternative methods for patients to document and share data.
As Papesh puts it, "If you build that trust, you build the connection, and you build that relationship, it sets a great foundation [for patients] to able to trust [you]. Answering the questions, [talking about] the hard topics, and wanting to share with [their provider] when there's something that typically they may withhold [can improve care]."
ALS Nexus
May is the annual awareness month for Amyotrophic Lateral Sclerosis, but our coverage of the topic doesn't stop there. And for good reason—in June, we connected with John Novak, MD, MS, director of the OhioHealth ALS Clinic and vice chair of The ALS Association's Care Services Committee, who provided us with some insight on a brand new and upcoming meeting that the organization is putting on: the ALS Nexus Conference. It will be ALS Assocation's first educational event, set to take place from July 14-17, in Dallas, Texas. He explained that it will feature sessions on the latest developments and opportunities in research, care, and advocacy, where clinicians can learn about ALS drug development, palliative care for ALS, ways to improve clinical trial efficiency, innovative technology and artificial intelligence, assistive technology, and access to genetic therapies, among other topics.
Novak explained that the group "hope[s] to attract a wide array of clinicians," including therapists, palliative care experts, and others. "We’re excited about having them involved and hope to get other clinicians besides neurologists to attend, talk, have lunch, and rub elbows. That’s how we advance ALS care," he explained.
You can learn more about the conference by visiting the conference's webpage, here: ALS Nexus 2024
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Stroke Care Across the Spectrum
Stroke care challenges and successes have been a major topic of discussion for our team for the first half of 2024, and June was no different. As advances in widening the treatment window for stroke have continued to come, conversations have shifted to increasing access to these treatments to underserved groups, and to tightening down on prevention efforts in at-risk groups.
The former topic was explored at length by our latest iteration of the Gold Standard Centers feature series, in which we dug into the progress that Cleveland Clinic has made in addressing those challenges with its Minority Stroke Program. We heard from Gwendolyn Lynch, M.D., FAHA, the program's director, as well as Abbas Kharal, MD, a vascular neurologist who works within Cleveland Clinic’s Cerebrovascular Center and the clinic, who offered insight into the importance of the center's work in not just treating these patients, but improving the critical education about stroke among the communities that lack it. Kharal said perfectly that "education is perhaps the most important aspect when it comes to minority stroke patients. Being aware of stroke risk factors and the importance of healthy lifestyle habits, being aware of stroke signs and when to seek help, and being educated about the importance of maintaining stroke follow-up and medication compliance are all aspects of health education that hold more value."
The latter topic was then addressed in an article about stroke as a serious threat for younger adults, penned by Steven Shapiro MD, the medical director for Stroke Services at RWJBarnabas Health's Cooperman Barnabas Medical Center. He highlighted some of the reasons why stroke occurs in those under the age of 45 and the risk factors as well as preventative measures of which this population should be aware. Notably, though, he tried to identify why there has been an increasing trend of rising stroke numbers among younger populations, narrowing it down to a few possible factors:
Patient Perspectives on Myasthenia Gravis
Another excellent piece we were thrilled to publish this month was from Anaya Mitchell, a young woman with myasthenia gravis (MG), who discussed her challenges and triumphs living with the disease by sharing her personal story of advocacy and community and finding strength in the disease's impact on her independence and identity. She made one of her more powerful points by reflecting on where her journey has taken her, saying, "MG is a significant part of my story, but it doesn’t define me entirely. I have learned to listen to my body and now understand the power of invisible strength. My experiences have deepened my empathy and fueled my commitment to raise awareness and advocate for those who have yet to find their voice, as I continue to navigate my own path to self-discovery. I’m proud of the person I’ve become—a testament to enduring and thriving despite the challenges MG has presented."
You can read her entire piece here: Unseen Battles: Advocacy and Community in the Face of Myasthenia Gravis
Parkinson Disease and Gene Therapy
In recent years, clinicians and patients have highlighted the need for more innovative approaches to address the progressive decline in dopamine network function that characterizes Parkinson disease. Gold standard treatment has been available for some time, but many lingering treatment needs remain, and as time ticks on, the interest in novel approaches, like gene therapy, has begun to peak. However, despite the potential of gene therapy in this population, substantial challenges impede its translation into clinical practice. Our team, along with the editors of our sister publication, CGTLive, dove into some of those challenges in an in-depth feature story on the topic.
The piece features insight from many experts in PD, including Michael Kaplitt , MD, PhD, a professor of neurological surgery and vice chairman for research in the department of neurological surgery at Weill Cornell Medicine ; Russell R. Lonser, M.D., director for the Gene Therapy Institute and chair of the department of neurological surgery at 美国俄亥俄州立大学 ; Ignacio Mata, PhD, an associate professor of neurology at the Cleveland Clinic Lerner Research Institute ; Daniel Kremens, MD, JD, an associate professor of neurology and codirector of the Parkinson’s Disease and Movement Disorders Center at Thomas Jefferson University ; Paul Y. Song, MD, the chairman and chief executive officer of NKGen; and Deb Phippard, PhD, the chief scientific officer of Precision For Medicine .
You can read the full multimedia exploration here: Where Are We: Development of Gene and Cell Approaches for Parkinson Disease.
Donanemab's Positive Advisory Committee Vote
Finally, we'd be remiss not to mention a pretty major FDA Advisory Committee vote from mid-June, in which the Peripheral and Central Nervous System Drugs Advisory Committee voted that the data from the phase 3 TRAILBLAZER-ALZ-2 trial (NCT04437511) assessing donanemab (Eli lilly), an investigational agent in development for Alzheimer disease, was sufficient enough in demonstrating clinical benefit. In just a few weeks, the agency will give its final decision as to whether the therapy will be approved.
At the conclusion of the hearing, the committee voted 11-0 (11 Yes; 0 No; 0 Abstain) that the evidence presented showed that donanemab is effective for the treatment of AD in the population enrolled in clinical trials with mild cognitive impairment (MCI) and mild dementia. In determining the vote, the committee members also factored in whether there was efficacy across the entire population, or in just a subset of patients (e.g., those with low, medium, and high tau levels).
When asked to share his reaction, Martin J. Sadowski, MD, PhD, a professor of neurology, psychiatry, and pharmacology at the NYU Grossman School of Medicine and director of the NYU Alzheimer Drug Trial Program, told he felt "extremely positive," noting that, "the 11–0 vote of the advisory panel represents a solidifying consensus among neurologists that anti-A? antibodies are a valid disease-modifying strategy for treating patients with AD."
That wraps up this month's issue of The Axon—thanks for reading! Make sure to subscribe to get alerts each time a new issue goes live!
Do you have a lead on a story you want to share? Let us know—email Matt Hoffman, our editorial director, at [email protected].
We'll see you here next month!