"It is exciting to witness numerous diverse and complementary efforts relying on genetic and pharmacological approaches to CMT. Some of these will surely bear fruit soon." ~ Dr. Florian P. Thomas
In this month’s ANA Q&A Membership Spotlight, we interviewed Florian P. Thomas, MD, MA, PhD, MSc. Dr. Thomas is the Chair of the Neuroscience Institute; Chair of the Department of Neurology, Director of the Hereditary Neuropathy Foundation Center of Excellence, Co-Director of Center for Memory Loss & Brain Health, and Co-Director of the ALS Center at the Hackensack University Medical Center.
He talks about talks about his clinical, scholarly, and advocacy efforts to advance the care of people with hereditary neuropathies and multiple sclerosis.
How are treatment options for multiple sclerosis and hereditary neuropathies different today from 10 years ago?
Most clinicians would address this question from pharmacological and molecular and cell biological vantage points. While my scholarly efforts enthusiastically embrace these paradigms, I rather focus my answer on care delivery in the fortunately shifting power differential between patients and healthcare providers. Our patients and their advocacy organizations, with our support (wisely), demand a culture change. Patients realize that their care needs exceed what a physician from a single specialty can offer. They also realize that they need to meet us at eye level, being informed about their health and treatment options. Many patients seek comprehensive care from interprofessional transdisciplinary teams that focus on fostering resilience, improving disease adjustment as well as health and sleep behavior, facilitating community living and return to work, and avoiding and addressing co-morbidities. In my own practice I discuss a consensus goal with my patients that they wish to dance at their grandchild’s wedding. Thus, I integrate neuro and health psychologists, rehabilitation, sleep medicine specialists and, in the case of CMT, ankle surgeons into a center-based approach. While this concept is not novel, the past 10 years have witnessed a far greater number of such disease-specific centers. Lagging behind is a shift from a fee-for-service to an outcomes-based model. Bundling payments for taking care of patients along pre-determined evidenced based pathways would likely facilitate care improvements.
What promising research is poised to change the standard of treatment for hereditary CMT neuropathies?
Our rapidly increasing understanding of the biological processes of axon-myelin inter-actions and maintenance is opening new treatment venues. Some of these are specific to the particular genotype, while others take advantage of common pathways involved in multiple CMT subtypes. Having been involved in the planning and execution of two clinical trials, I am optimistic about curbing the clinical progression of this condition in adults and arresting the development of clinical manifestations in minors. It is exciting to witness numerous diverse and complementary efforts relying on genetic and pharmacological approaches to CMT. Some of these will surely bear fruit soon.
What work is your team undertaking to move understanding or treatment for neurological conditions?
While telehealth had been a component of care delivery in many niches of health care, the ongoing pandemic has forced many to embrace alternatives to in person visits and to adapt our standards of clinical evaluations. This need applies to both clinical and clinical trial scenarios and to all members of the healthcare team. We are studying the effectiveness of telehealth counseling as it applies to our multiple subspecialty centers focused, among other conditions, on MS, CMT, and headache.
How has the ANA supported your career and/or work in this area?
I am glad to be active in an organization that, by all appearances, is a path lighter among professional groups when it comes to taking responsibility for systemic racism in its past, verbalizing recognition of race-based disparities in grantsmanship, career success, and reflecting on health and healthcare disparities for people of color. I look forward to learning more about proposed action plans to combat racial inequity and increase inclusivity in academic neurology, while celebrating the societal benefits of diversity.