ARTICLE IN BRIEF
Culling direct and indirect costs of prevalent neurologic diseases from the medical literature, a team of investigators estimated an economic burden of approximately $800 billion annually in the United States.
Choosing the most prevalent and costly neurological diseases for analysis, a team of researchers has quantified the enormous economic burden of neurologic disease in the United States and determined that the combined annual costs of these diseases total nearly $800 billion dollars. The figure will likely rise, they said, due to the aging of the population.
“As of 2011, nearly 100 million Americans are afflicted by at least one of the more than 1,000 neurological diseases,” wrote the lead author Clifton L. Gooch, MD, FAAN, professor and chair of neurology and neuromuscular medicine at the University of South Florida in Tampa, and colleagues in the April issue of the Annals of Neurology.
“Though mortality is often the primary outcome measure in many research studies, the cost and societal impact of diseases are largely determined by the disability they cause; consequently, nearly 50 percent of the total health burden in the US is due to morbidity and disability,” they wrote, pointing out that this is particularly true of neurological disorders, since the total of years lost to disability from neurological and musculoskeletal disorders is greater than that of all other categories of disease.
“As we move now into an era where the elderly population, already at record highs, is expected to double by 2050, the incidence of neurologic disease is increasing more and more,” Dr. Gooch told Neurology Today. “We all know this as neurologists, but I'm not sure that society at large is aware of just what an impact neurologic disease has not only at the individual level but also at the aggregate level for society. As the AAN and American Neurological Association begin to advocate more, we want to be able to accurately convey the tremendous cost that this is going to represent for this country to decision-makers at the federal, state and local level, in hopes that they will see the importance of enhanced funding for neurologic disease research.”
The idea for the project came when Dr. Gooch began looking for similar information, only to find that it was not readily available. While individual cost estimates for stroke, Alzheimer's disease, and other neurologic diseases existed, Dr. Gooch found that no paper attempted to capture the cost of neurologic disease as a whole, and most papers on individual diseases did not account for the whole burden of those diseases, including both direct and indirect costs.
“Neurologic disease is more likely than many other categories of disease to disable patients for many years before they die,” he said. “There is a huge cost to society in terms of the burden of care of these individuals, but also [in terms of] the lost wages and even lost wages of caregivers for people who are not eligible for nursing home care.”
Gathering the data proved much more challenging than expected. “Our first plan was much more ambitious: We wanted to provide a global accounting of all neurological disease. But when we spoke to high-level neuroepidemiologists, we quickly realized that would be prohibitive,” Dr. Gooch said. “So we looked carefully at the literature and chose nine diseases that impacted the most people and had the highest costs associated with them.”
The research team scoured the literature for the highest-quality papers they could find. Some included indirect costs of disease, while others required extrapolation based on disability information. “All non-medical indirect costs were pegged to the consumer price index,” Dr. Gooch explained. “In my head, I was expecting a total cost of something like $300 billion, and was extremely surprised to find that just these nine diseases cost nearly $800 billion a year. As a point of comparison, the entire 2016 military budget of the United States was $598.5 billion.”
The researchers included only diseases that are both prevalent and costly, which leaves out a wide range of neurologic conditions such as spinal muscular atrophy, amyotrophic lateral sclerosis, and hereditary neuropathies. They also chose to exclude disorders such as depression and chronic pain that can have mixed etiologies beyond the primary nervous system, even though neurologists often manage these diseases. “A full accounting of all neurological disorders would, of course, push cost estimates substantially higher,” the researchers wrote.
The breakdown of costs — both direct and indirect — of the conditions were included for these conditions: dementias: $243 billion ($170 billion of these costs are attributable to Alzheimer's dementia, and $73 billion to other dementias); chronic low back pain: $177 billion; stroke: $109.6 billion; traumatic brain injury: $86 billion; migraine headache: $78 billion; epilepsy: $36.8 billion; multiple sclerosis: $24.2 billion; spinal cord injury: $18.5 billion; Parkinson's disease: $15.5 billion.
The paper's authors suggested a series of concrete steps to reduce this burden, including accelerating translational research in preventive and disease-modifying therapy; enhancing outcomes and comparative effectiveness research; comprehensive databasing and tracking of neurologic disease; and taking advocacy to the “next level”— coordinating efforts among different groups as never before.
Leading neurologists praised the report's comprehensiveness. Barbara G. Vickrey, MD, MPH, FAAN, professor and chair of neurology at the Icahn School of Medicine at Mount Sinai in New York and an expert in health care delivery innovations, noted that the last such effort to quantify the economic burden of neurologic disease was prepared 25 years ago when a monograph was released by the National Foundation for Brain Research as part of the kickoff to “The Decade of the Brain,” proclaimed by then-President George H.W. Bush.
“It's surprising that there hasn't been more on this topic over the years,” Dr. Vickrey said. “Obviously, people have done individual cost studies in specific areas, but it's crucial to pull these studies together to grasp the collective societal impact of neurologic disorders.”
“It's not easy to gather all of this in one place,” agreed health services researcher Eric M. Cheng, MD, FAAN, associate professor of neurology at the David Geffen School of Medicine at the University of California, Los Angeles. “Deborah Hirtz and colleagues published an article about the prevalence of neurological conditions back in 2007 [in Neurology], but we need more frequent updates of this information. And while we don't want to think of our patients in terms of dollars, realistically speaking, that's one way to measure the impact of a disease.”
Dr. Cheng noted that since neurologic diseases can strike across the lifespan and with varying levels of mortality and disability, simply assessing the burden of neurologic disease using metrics such as prevalence, mortality rates, or impact on quality of life may miss its total impact.
Dr. Vickrey noted that the study authors provided comprehensive recommendations, all of which are important. “There isn't really an area or type of recommendation that is not addressed here with the exception of diagnostic testing. That's an area that is exponentially expanding because of genetic testing and advances in neuroimaging that are increasingly linked to screening initiatives and to targeting emerging therapies to subpopulations most likely to benefit.”
But there are major barriers to many of these goals. For example, Dr. Cheng noted, trials of preventive approaches are particularly difficult. “In a treatment trial, the duration of a trial is typically months to a few years. But in a prevention trial, you need to extend the length of the trial long enough so that enough people in the control arm develop the disease or else you need to dramatically increase the sample size to detect an effect. But as the article points out, if we were to be able to prevent even a small percentage of these diseases, it would have a big impact. To improve prevention, I think we need to expand the scope of our current registries and have cross-institutional databases, as the authors mention.”
Those barriers also include budgetary constraints, noted Lyell R. Jones, MD, FAAN, director of the adult neurology residency program at the Mayo Clinic in Rochester, MN. While the most recent iteration of the federal budget agreed upon by Congress erased drastic proposed cuts to the National Institutes of Health (NIH) and instead added $2 billion to the NIH's budget for the rest of 2017, much more is needed. “Funding for the NIH fell significantly for more than a decade, thanks to budget cuts and sequestration,” Dr. Jones said. “In inflation-adjusted dollars, the NIH lost 22 percent of its research funding capacity from 2003 to 2015, according to the Federation of American Societies for Experimental Biology. Horse trading for the 2018 budget has just begun; whether there will be enough to fund some of these priorities remains to be seen.”
Dr. Vickrey also observed that incentives are needed to advance translational research. “We really need translational investigators in neuroscience with the passion and support to move their work forward in a particular disease area,” she said. “With the growing demands for clinical volume in an academic medical center, it's a challenge: how do we carve out and properly resource the time and effort for the serious translational research that is needed to accelerate therapies? A decline in clinical reimbursement has had an impact on the pool and capacity of these investigators, as the authors note.”
She suggested that the move toward value-based care might help to address this issue. “If we really do move to a system where you're paid for the outcomes you produce in a population rather than the volume of work you do, presumably that would decrease some of the pressure to see more patients that we've had in the fee-for-service model. Indirectly, that shift from volume-driven payment to outcome-driven revenue streams may enable academic investigators to devote needed time to translational research.”
To improve advocacy, Dr. Cheng pointed to the model of the American Cancer Society (ACS). “Individual cancer types are very different from one another, but by combining their impact using the measure of mortality, the ACS has been able to achieve much more in terms of recognition and funding,” he said. “Maybe combining the impact of neurologic conditions using the measures of prevalence and cost would similarly advance our specialty.”
Dr. Vickrey agreed. “I think the American Brain Coalition [which brings together the United States' leading professional neurologic, psychologic, and psychiatric associations and patient organizations] is attempting to fill that role,” she said. “It's not at the level of recognition that the ACS has yet, but its aim is to bring the advocacy organizations and professional societies together to have more of an impact.”