Support for Living with Multiple Sclerosis
Good Days strives to be a patient advocate whether we have funding available for a specific disease group or not. Our Patient Care Navigators speak directly with patients and their families and always make sure to provide referrals to support groups, foundations and disease-specific organizations that might also be able to support access to care, emotional, psychological or physical needs.
The Multiple Sclerosis Association of America is one such valued partner. We spoke with Peter Damiri, Vice President of Programs and Services, to discuss MSAA’s work and the resources they offer those affected by multiple sclerosis.
Good Days: How many people are affected by MS today?
Peter: The estimate of individuals living in the United States with MS is more of an educated guess from experts in the field, versus an exact number of patients. MS organizations have been advocating for several years to create a national MS registry, but this has yet to become a reality. As a result, it is estimated that approximately 400,000 individuals have been diagnosed with MS in the United States and as many as 2.5 million worldwide, with projection of 10,000 new cases diagnosed in the United States annually.
Can you remind us what are the symptoms?
Researchers have theorized that MS could be caused by a slow-acting virus such as the measles, Epstein-Barr, and others that remain dormant for many years then suddenly attacks the central nervous system. Most people with MS experience their first symptoms and are diagnosed between the ages of 15 and 50, although individuals of any age may be diagnosed with MS. The symptoms of MS range from physical symptoms (such as muscle stiffness, bladder and bowel problems, tremor, and mobility issues), to emotional/ psychological symptoms (such as anxiety, depression, and cognitive changes), to “invisible” symptoms (such as fatigue, numbness, pain, and visual disorders).
In what ways does MSAA support patients with MS?
MSAA is a national, nonprofit organization founded in 1970. Our organization is dedicated to improving lives today through ongoing support and direct services to individuals with MS, their families, and their care partners.
MSAA’s free services help improve lives. We offer tools to help manage the ever-changing course of MS. These tools are part of our Shared Management philosophy, involving education, training, use of technology, and tools to promote healthy outcomes. Shared Management is a concept whereby both the patient and healthcare providers work together to achieve the best possible health outcomes. MSAA’s Shared-Management tools include our S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™, and a resource database, My MS Resource Locator®.
One of the many programs offered by MSAA to assist the MS community involves funding support for magnetic resonance imaging (MRI) exams. Our programs also include a Helpline with trained specialists; award-winning educational videos and publications, including MSAA’s magazine, The Motivator; safety and mobility equipment distribution; cooling accessories for heat-sensitive individuals; educational programs held across the country; and a Lending Library among other services.
How can an individual apply for MRI funding?
MRIs are critically important for the diagnosis and follow-up treatment and care of MS. Unfortunately, MS patients who are uninsured or under-insured may not be able to obtain an MRI exam to help determine a treatment course and other vitally important healthcare options.
The MSAA MRI Access Fund assists with the payment of cranial (brain) and c-spine MRI scans for qualified individuals who have no medical insurance or cannot afford their insurance costs and require the exam to help determine a diagnosis of MS or evaluate current MS disease progression. For qualified individuals who have MS or are suspected of an MS diagnosis, MSAA will provide financial assistance with new MRIs or help reimburse costs for a previous MRI up to a capped spending limit.
What are some of the other challenges when it comes to treatment and access to care for MS?
While it is very encouraging that there are 15 disease modifying therapies approved by the Food and Drug Administration to treat multiple sclerosis, the MS community can sometimes face barriers to care which involve having adequate health insurance or being able to afford the plan’s deductible and copay costs, finding the prescribed medication on the plan’s formulary, or having the flexibility to switch medications if deemed medically necessary. Also, finding a treating neurologist who specializes in multiple sclerosis, especially in rural areas of the country, can make it challenging for the person with MS and his or her family to receive the most accurate and up-to-date care as possible.
To learn more about the MRI Access Fund and requirements to qualify, please access https://mymsaa.org/msaa-help/mri/ or call (800) 532-7667, ext. 120.
To learn more about MSAA’s free resources, visit www.mymsaa.org or call toll-free at (800) 532-7667.