Nearly one million people in the United States are living with Multiple Sclerosis (MS). I am one of them.
Aware that I am not alone in dealing with this chronic disease should offer some comfort. But, in reality, MS is a lonely ailment. For most of us, symptoms adversely impacting our central nervous system are not perceptible. And not disclosing one’s MS to an employer, or even to family, colleagues or friends is common out of concern that the disease and its impact on one’s ability to live life to the fullest may be misunderstood.
That’s why MS Awareness Week, March 11-16, is so important. It’s an opportunity to enlighten others about MS, how individuals adjust their daily lives to deal with the variety of symptoms and unpredictable course, while finding encouragement in ongoing efforts to better understand the causes and prevalence of MS, as well as progress towards finding a cure.
MS is expensive. A 2022 National MS Society study found annual medical expenditures associated with the disease are more than $65,000 than what individuals who do not have MS pay. The largest expenses are medications neurologists prescribe to prevent further deterioration of one’s nervous system. Fortunately, more than 22 drugs to manage MS, to ensure symptoms do not worsen, are available today. But essential MS drugs are exorbitantly priced. The one I take costs over $100,000 a year. Regular doctor visits, bloodwork and MRI exams add to the financial burden of living with MS. 40% of people with MS have altered or stopped taking medications due to high costs.
My MS journey began in 1990, when a neurologist, reviewing the first MRI exam of my brain and spine, informed me that I have the disease. He told me my MS was mild, that it could remain that way forever, or, given its unpredictability, suddenly change. My symptoms did change without warning in 2003. Another neurologist, reviewing my second MRI, declared, “You look better than you should.” I’ve been going to an MS Center for regular checkups and monitoring, taking prescribed medications, for more than two decades to ensure the disease is stable.
The peculiar nature of MS is that each person may experience it differently. Symptoms vary greatly, including disabling fatigue, mobility challenges, vision, numbness or other issues. In short, there are a million stories among those known to be living with MS in America.
For a long time, MS was considered an illness found mainly among white people in the northern hemisphere, with more women than men being diagnosed. A groundbreaking study confirmed last year that anyone is susceptible to developing MS. While the prevalence in whites remains higher, Blacks are second, followed by Hispanics and other ethnicities. Clearly, New York City, with its diverse population, is ideal for researchers to glean more data on the prevalence of MS and the experience of different communities in the five boroughs.
Inequities in our nation’s healthcare system are evident in the MS community. In addition to accessing affordable medications, individuals living with MS endure a variety of challenges in finding medical professionals who are experts in MS, in getting the initial diagnosis and a plan for treatment, and having resources necessary to manage the disease. For some in communities of color, complications in getting to the right MS medical team is compounded by a historical lack of trust in the health care system.
An MS Center is one way to receive expert care. Such facilities, mostly affiliated with New York teaching hospitals, where neurologists specializing in MS keep updated with the latest research on the disease and treatments, offer comprehensive care. Queens, the most diverse county in the U.S. does not have an MS Center. Residents have choices of going to another borough, of seeing neurologists who may not be MS specialists, or forgoing treatments, which means taking risks regarding possible progression of the disease. The MS Society’s New York Chapter is reaching out to neurologists in Queens to determine who is currently dealing with MS patients and engage them in partnership with the MS Society to provide services as needed and to establish an MS Center.
Demystifying MS, increasing the number of people who are empathetic with those living with MS is critical to ameliorating the sense of uncertainty and solitude that many of us feel at times. Increased understanding of MS, wider support for the goal of ending it forever, will greatly strengthen our community of hopefulness.
Kenneth Bandler is a member of the Greater New York City—Long Island board of trustees of the National MS Society.
