While many people skipped regular health check-ups during the COVID-19 pandemic, new research indicates that people with multiple sclerosis (MS) used online telehealth services more frequently to keep in contact with their health care providers and were highly satisfied with the outcome.

The Kessler Foundation study, published in Archives of Physical Medicine and Rehabilitation, examined the effects of the COVID-19 pandemic on health care among individuals with MS — a chronic and progressive neurological disorder and the leading cause of non-traumatic disability among young and middle-aged adults. Researchers found high rates of health care disruption among individuals with MS and neurologically healthy individuals, but also found that people with MS were more likely to utilize telehealth services than people without MS.

“The findings suggest that telehealth services were well liked during the pandemic. Because many individuals with MS have physical disability that may make travel more difficult, temporary expansions of telehealth coverage should be made permanent after the pandemic in order to expand access and reduce health care disparities,” said lead author Michelle Chen, a core member of Rutgers Institute for Health, Health Care Policy and Aging Research and neurology instructor at Robert Wood Johnson Medical School.

Using online survey data collected between September and October 2020, researchers analyzed rates of health care disruptions, such as missing or canceling appointments and experiencing delays, and telehealth use for medical care and mental health care of individuals with and without MS.

According to the study, telehealth appointments almost doubled the rates of in-person medical care appointments and rates of mental telehealth appointments were more than five times higher than in-person appointments. Since individuals with MS require regular medical care, the onset of medical facility closures and social distancing measures during the early onset of the pandemic was cause for concern because health care providers understood that this would pose a significant impact on the health of this population.

“The current study significantly contributes to our understanding of health care utilization during the COVID-19 pandemic,” said corresponding author Helen Genova, associate director of the Center for Autism Research at Kessler Foundation and research assistant professor at Rutgers University-New Jersey Medical School.

More information is needed, researchers say in order to gather data on the health insurance status of participants, as well as qualitative interviews with participants in order to further understand the nature of the health care disruptions.

The estimated cost of multiple sclerosis (MS) reached $85.4 billion in 2019 in the United States, according to a new report published in the April 13, 2022, online issue of Neurology^®, the medical journal of the American Academy of Neurology. In addition, when researchers compared people with MS to people without MS they found that excess medical costs represent 74% of the overall economic burden of MS. The excess medical cost per person was $65,612 that year.

These costs not only reflect the cost of medications and health care. Neurologic disability can prevent people with MS from working or limit employment opportunities and reduce earnings. Also, many family members need to leave their employment to be caregivers. These costs are also reflected in this analysis as non-medical costs.

“Multiple sclerosis is an expensive disease to treat and the debilitating effects of MS can result in considerable disruption to daily living including work, physical independence, mobility and social interaction,” said study author Bruce Bebo, PhD, of the National Multiple Sclerosis Society in New York, NY. “The findings of this study help underscore the burden of MS in the US and our hope is our results will inform decision-making regarding MS-related health resources.”

Multiple sclerosis is a disease of the central nervous system which is made up of the brain, spinal cord and optic nerves. MS is chronic and can be unpredictable and disabling. Symptoms may include fatigue, numbness and tingling, loss of balance, weakness and problems with vision. An estimated 1 million people in the United States live with MS, and it affects more women than men. While there are medications to treat symptoms of the disease, there is currently no cure for MS.

For the study, researchers reviewed Medicare and insurance claims to determine direct medical costs, looking at a total of 10,589 people with MS and another 105,893 people without MS matched for age and sex. They calculated the per person direct medical costs for 2017, 2018 and 2019, and then calculated the average one-year cost. Researchers also surveyed 946 study participants and their caregivers about indirect costs, such as job loss or lost productivity on the job, cost of paid and unpaid caregivers, and home modifications.

Researchers found an estimated total economic burden in the U.S. of $85.4 billion. That amount included $63.3 billion in direct medical costs as well as $22.1 billion in indirect non-medical costs. Prescription medications were the largest component with $37.9 billion, amounting to about 54% of direct medical costs, followed by drugs administered in the clinic with $6.7 billion or about 12%, and outpatient care with $5.5 billion or 9%.

The average excess medical costs for a person with MS compared to a person without MS was $65,612. That included $35,154 for medication, the largest proportion of this cost.

The annual cost for a person taking MS medications ranged from $57,202 to $92,719.

“The costs of MS are very high not only on a personal level but a national level as well,” Bebo said. “Our results suggested a possible role for additional policy initiatives to better support individuals and families affected, in terms of providing treatment and long-term care, work-site support, employment, and occupational training. These measures could reduce the economic burden of MS and help improve the lives of those living with MS and their family caregivers.”

Bebo added, “Right now, in the U.S. there are about one million adults with MS and we estimated that by 2039, there will be nearly 1.2 million people living with MS. With this, the economic burden will increase to $108.1 billion.”

A limitation of this study was that the indirect and non-medical costs were estimated using a self-administered survey and relied on respondents’ memory, meaning some costs may have not been accurately reported.

Cedars-Sinai Physician-Scientists Are Pioneering Imaging Techniques and Investigating New Biomarkers to Improve MS Diagnosis and Treatment

Credit: Image by Cedars-Sinai.

Using advanced techniques for imaging the brain and eyes, along with new biomarkers, researchers in the Department of Neurology at Cedars-Sinai are working to present a clearer picture of multiple sclerosis (MS). Their work could lead to improved diagnosis and treatment of the disease, in which the body’s immune system attacks the brain, spinal cord and optic nerves.

“Multiple sclerosis is a disease that can look very different in different people, and the path to diagnosis is equally varied,” said MS specialist Marwa Kaisey, MD, assistant professor of Neurology at Cedars-Sinai. “Diagnosis is complex because many other diseases mimic MS, and while we have a set of diagnostic criteria, there’s no single test that is definitive.”

Misdiagnosis Is Common

The immune system in patients with MS attacks the insulating layer that protects nerves. The disruption or loss of these layers results in lesions, which show up as white spots on MRI brain scans—the main tool for diagnosing the condition.

MS lesions disrupt communication within the brain and between the brain and other parts of the body, resulting in vision problems and eye pain, double vision, muscle weakness, trouble with coordination, fatigue, dizziness, and hearing and speech problems. But MS is not the only condition that can cause white spots to appear on an MRI.

“Almost 1 in 5 new patients coming into our clinic with an existing diagnosis of MS turned out not to actually have MS, according to a study that we published in 2019,” Kaisey said. “When we talk to other MS specialists about this, they’re not surprised. They also see this trend of misdiagnosis.”

Kaisey said migraines are the most common cause of non-MS white spots on MRIs. “However, in our past study, among 43 people who were misdiagnosed with MS, we found as many as 27 different conditions actually causing the white spots on their imaging,” Kaisey said.

Patients who are misdiagnosed with MS are needlessly prescribed costly immune-modifying treatments that can increase risk for infection, cause organ damage and decrease the effectiveness of vaccines.

“If you have MS, the medications are worth the side effects because they are saving your life and protecting your brain,” Kaisey said. “But it’s a big deal to be on these medications if you don’t need to be.”

New Brain Signs

A newly identified biological sign called “central vein sign” could help physicians determine whether white spots on a patient’s MRI are caused by MS or by something else, ultimately reducing misdiagnosis.

MS lesions tend to form around tiny veins through which immune cells enter and attack brain tissue, so most lesions caused by MS have a vein in the middle. “We’ve known this for more than 100 years, but until recently we didn’t have a way to see it on an MRI,” Kaisey said.

New MRI techniques pioneered by Pascal Sati, PhD, director of the Neuroimaging Program in the Department of Neurology and associate professor of Neurology at Cedars-Sinai, make central vein sign visible.

“Current MRI images don’t give us the whole picture, which is why we developed MRI sequences that improve image quality so that we can see very small veins, called veinules, in the brain,” said Sati. “We superimpose that over a conventional MRI image of the lesions so that it is clear which brain lesions have a central vein and are likely caused by MS.”

Ongoing studies at Cedars-Sinai and 10 other MS centers in North America are using Sati’s technique to image 400 patients at risk of developing MS—the final step in scientifically validating central vein sign as a way to diagnose MS.

Importantly, the imaging technique Sati developed can be used with widely available MRI scanners and performed quickly enough to fit the workflow of the typical radiology center. He is also developing a machine learning algorithm to make evaluation of the imaging results easier for physicians.

“Once the image is taken, our deep learning algorithm can analyze it very quickly and tell the clinician how many lesions show the central vein sign,” Sati said. “The number of lesions with the central vein sign can indicate whether or not the patient has MS.”

The central vein sign could also help doctors determine how well a patient is responding to treatment by confirming that any new lesions that develop are caused by MS and not something else.

“With the central vein sign, we can clearly see which lesions are related to MS,” Sati said. “This information is empowering doctors to make decisions about whether to continue a patient’s current therapy, switch to a different MS therapy, or treat them for a completely new, or different, condition.”

Another Window Into MS

Imaging of the retina—the layer of tissue at the back of the eye—and the optic nerve can also help improve MS diagnosis. Neurologist Omar Al-Louzi, MD, director of the Visual Outcomes Laboratory at Cedars-Sinai, is at the forefront of this technology.

“Around 25% of MS patients experience vision loss or blurring as their first symptom, and as many as 80% experience vision problems at some point in the course of their disease,” said Nancy Sicotte, MD, chair of the Department of Neurology, director of the Multiple Sclerosis and Neuroimmunology Program and Women’s Guild Distinguished Chair in Neurology. “Dr. Al-Louzi’s research seeks to use the eye as a window to produce better outcomes for patients.”

Using a technology called optical coherence tomography (OCT), which functions like an MRI for the retina and optic nerve, Al-Louzi can detect MS lesions that an MRI can miss.

“The optic nerves are very small and difficult to image,” Al-Louzi said. “Detecting lesions there can help us clinch an MS diagnosis, especially in patients who are relatively early on in their disease course.”

Optical coherence tomography captures 3D images of patients’ retinal layers, including the ganglion cell layer, which sends visual information to the brain.

“Shrinking of the ganglion cell layer often mirrors overall brain degeneration, and occurs in 70% to 80% of MS patients,” Al-Louzi said. “This is why ganglion imaging could also help us improve diagnosis.”

Retinal imaging could also help indicate how well a patient is responding to treatment.

Al-Louzi is continuing to study the role of OCT, along with a related technique called optical coherence tomography angiography (OCTA), as a way to understand how MS affects the blood vessels in the retina.

“Our lab is collaborating with Dr. Kaisey to compare the vascular fingerprint of MS in the retina to that of other brain conditions involving blood vessels, such as migraine or small vessel disease, to see whether retinal vessels can help us distinguish between these different conditions,” Al-Louzi said.

While ocular nerve and retinal imaging is important to evaluate in MS patients, it is not yet widely available in practice. Al-Louzi hopes his research will help change the standard of diagnostic care.

“I think failing to use these imaging techniques is a missed opportunity,” said Al-Louzi. “Our hope is that these tests will become widespread and shorten the time between symptom onset and getting the right diagnosis.”

Seeing patients wrongly diagnosed with MS, and MS patients who have gone undiagnosed, drives these physicians to keep working toward better solutions.

“I didn’t really intend to go into this line of research, but being in clinic every day and seeing these problems firsthand, I just had to do something about them,” Kaisey said. “Almost 1 million people in the U.S. alone live with MS. Fortunately, these imaging techniques could offer an invaluable solution.”  

The rate of multiple sclerosis (MS) cases varies greatly by race and ethnicity. A new study suggests that the prevalence of MS in Black and white people is similarly high, while much lower in Hispanic and Asian people. The research is published in the April 27, 2022, online issue of Neurology^®, the medical journal of the American Academy of Neurology.

“MS has long been believed to be a disease of white people, but the prevalence of MS in Black people has been understudied and therefore underrecognized,” said study author Annette Langer-Gould, MD, PhD, of Kaiser Permanente Southern California in Los Angeles and a member of the American Academy of Neurology. “The findings of our study and other recent studies indicate that MS has affected Black and white adults at similar rates for decades.”

Langer-Gould said, “The belief that MS is rare in Black people has been based on a history of problematic evidence, including a 1950s study of veterans that found white men more likely than Black men to receive services through the Veterans Administration for MS. That study did not consider the barriers and disparities Black men faced in receiving services, and that they were less likely to be measured accurately.”

Langer-Gould also notes that even current research uses the terms Hispanic, Asian, Black, and white, which are socially constructed labels that influence social standing and opportunities for advancement in the U.S., not uniform biological or even cultural differences. She said it’s crucial that new research addresses systemic bias in medical research.

This new study looked at more than 2.6 million adults residing in Southern California. Researchers analyzed Kaiser Permanente health records to determine how many people had a confirmed diagnosis of MS in 2010.

Researchers identified 3,863 people with MS. The average age was 52 and 77% were women.

Researchers found that MS prevalence per 100,000 people was similarly high for Black and white people, occurring in 226 per 100,000 Black people and in 238 per 100,000 white people. MS prevalence was lower among Hispanic and Asian people, occurring in 70 per 100,000 Hispanic people and 23 per 100,000 Asian people.

The percentage of women with MS was more pronounced among Black and Asian people. Of Black people with MS, 82% were women and of Asian people, 84% were women. Of white people with MS, 76% were women and of Hispanic people, 75% were women.

“Understanding MS prevalence in all people has important implications when it comes to making sure people are properly screened and treated for this disease,” said Langer-Gould.

“More studies are needed to determine whether MS is also an emerging disease among Hispanic people in the U.S. and whether MS susceptibility and prevalence vary among Hispanic or Asian individuals from different cultures and ancestral backgrounds,” Langer-Gould added. “Larger studies are also needed that look at bigger populations across the U.S.”