According to the Centers for Disease Control and Prevention (CDC), there are 61 million people in the United States living with a disability. This equates to approximately 20% of the U.S. population. The primary functional disability factors include mobility, cognition, independent living, hearing, vision and self-care.
Caring for patients with chronic neurological diseases requires significant ancillary services and resources. The problem of adequate resources in patient care is not unique to neurology by any means. However, in our patient population, it exists almost universally due to the high frequency of these disabling factors.
In a neurology practice, significant time and effort is needed to provide services for these patients. Resources are always an issue but differ based on patient, cultural and financial variables. There are also differences in neurology practices themselves based on their geographical, independent or institutional settings. In all systems, efforts to supply patient resources are restrained. No matter where the neurologist practices, neurology functions based on Evaluation and Management (E&M) coding revenue to support the staff are needed to run the practice.
Early in my career due to the volume of multiple sclerosis patients with whom I was involved, I realized how many more staff members were needed for their care compared to my general neurology patients. For general neurology care, the ratio of staff to physicians was 2 to 1. For multiple sclerosis, it was 5 to 1. The multiple sclerosis team included a medical assistant, nurse, nurse practitioner and social worker, and staff coordinating ancillary services and tests outside our office.
Despite this extra staff, the payment from E&M coding was not any higher than, for instance, a migraine patient. I was a psychology major in college with no formal business training, but even I could see that was not sustainable. A similar analysis was true of other chronic neurological diseases back then and is becoming more so now.
Alzheimer’s disease, Parkinson’s disease, cerebrovascular disease, epilepsy and multiple sclerosis make up a significant proportion of the disabled population in the United States. There are approximately 6.2 million people in the United States over 65 with Alzheimer’s disease, over 1 million with multiple sclerosis, 1 million with Parkinson’s disease and 2.5 million with epilepsy.
The annual U.S. cost of care for Alzheimer’s disease is $355 billion, and for Parkinson’s disease, it is $52 billion. Treatment over a lifespan for patients with multiple sclerosis is three times that of the general population. The cost for epilepsy is about $12.5 billion annually.
Marked improvement in acute stroke management has become more mainstream, however, stroke is still the leading cause of non-traumatic disability.
We have a great understanding of how to limit and prevent atherosclerotic disease. Unfortunately, to date, we do not have any known preventions for most neurological diseases because their etiologies have remained elusive and are likely multifactorial.
My personal experience has been caring for patients in private practice and small group settings. In these settings, resources come primarily from E&M coding reimbursement, i.e. the patient visits. Chronic care neurology patients take more time than others, limiting how many visits are possible in a day. Some private practice providers have reimbursable ancillary services but are usually only provided in larger medical group settings. It is not possible to add new office staff for non-reimbursable activities.
The burden falls on the provider and existing staff, but there is only so much they can add to their busy schedules. Some offices, alternatively, are able to provide services through philanthropic measures.
It turns out the plight of our academic and hospital-based colleagues is not much better. Neuroimaging, therapeutics, physical therapy and procedures are reimbursed and bring revenue to those systems. However, the financial contribution to the global system is attributed to the other departments, not the neurology department. They, like their private practice colleagues, have a difficult time getting more support for the added office resources needed. It seems the same frustrations and difficulties exist universally in neurology.
The recent story in Alzheimer’s disease sheds light into existing and future problems. Last year, the Food and Drug Administration (FDA) approved aducanumab (Aduhelm) for the treatment of Alzheimer’s disease. There were two Phase III studies submitted for approval. Both showed a significant reduction in amyloid plaque compared to placebo in patients with Alzheimer’s disease. One of the studies showed marginal clinical benefit, the other did not.
The original approval was based on the fact that aducanumab was a novel therapeutic in a disease with unmet needs even with its questionable clinical benefit. Like we have seen in many of our autoimmune diseases, it came with a hefty price tag, over $50,000 a year. This caused Medicare to raise their prices per member from $148.50 to $170.10 a month, with about half of the increase bracing for the cost of Alzheimer’s care. It is not unreasonable to expect that we will have similar price issues related to these diseases in the future.
As we have vastly improved therapies, the burden of office time for prior authorizations grows. Aducanumab also increased diagnostic work-up as we no longer could rely on the clinical diagnosis of Alzheimer’s disease. Instead, we had to prove the existence of amyloid deposition in the brain with a lumbar puncture as amyloid PET scans are not reimbursed. Since the therapy was most useful in mild cognitive impairment, formal neuropsychology evaluations were also added to the treatment paradigm. Such evaluations require personnel for prior authorizations and scheduling for services performed outside the office.
We expect future advancements in therapies for our patients. With these treatments, added ancillary services and provider time will further tax the neurology office. Aducanumab, like many other therapies in neurology, requires intense clinical and radiographic monitoring. Aducanumab poses a risk of cerebral microbleeds and edema. Fortunately, in the study population, these events were usually subclinical. However, monthly clinical evaluations and scheduled and emergent imaging was part of the treatment protocol.
Like all new therapies, we have no idea what risks are posed in the general population with comorbidities excluded in the clinical trials. Great lengths will be necessary to properly evaluate and treat eligible patients for new therapies without any added resources to the neurology clinic.
Other therapies are on the horizon for Alzheimer’s disease and other neurological illnesses. For now, the aducanumab story is on hold. With a questionable clinical benefit and approval by the FDA based mostly on radiographic improvement in an unmet need, aducanumab will be further restricted to research populations for now until a clearer clinical picture emerges. The neurology community and stakeholders were able to help put the brakes on this therapy of unknown benefit. However, the obvious hurdles hoisted upon the neurologist to use aducanumab will be seen with therapies in the future.
It is not rewarding to discuss patient care based on healthcare economics and the realities of resources. Most of us are not built or trained that way. We would all rather talk about the amazing treatments and therapeutics we have for our patients and see them get better. We enjoy our field of play, the exam and the operating rooms. But it is a necessity to advance the care they need.
I am fortunate to have had the experience of learning from my colleagues and institutions throughout the country. It has been crucial for current care and helps our practice get ready for care in the future. We will not always have the proper resources for every disease and every person, but we will keep working to help our patients any way we can. Unfortunately, philanthropy and patient advocacy will likely continue to play a large role in the care of patients with chronic neurological conditions.
Dr. English is the Medical Director at the Multiple Sclerosis Center of Atlanta. He is board certified by the American Board of Psychiatry and Neurology for adult neurology with sub-specialty training in clinical neurophysiology. He held previous certification in Neuroimaging from the United Council for Neurologic Subspecialties. Dr. English received a B.A. in Psychology from Boston College, then graduated from Dartmouth Medical School. He completed his internship, residency and fellowship at the University of Maryland