Multiple Sclerosis Awareness

MARCH 2019 | FUTUREOFPERSONALHEALTH.COM

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Multiple Sclerosis Awareness Bryan Bickell is using his love of pit bulls to make sure other people diagnosed with MS aren’t short-handed

DISCOVER how doctors are changing approaches to treating MS

LEARN about GE’s contributions in advancing MRI technology

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Teens facing life after an MS diagnosis have an ally who understands because he’s been there.

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in this issue

MS patients going to doctors’ appointments may qualify for free transit options.

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Your insurance may change your medication without telling you, here’s what you should know.

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How Multiple Sclerosis Treatments Are Evolving A mutlple sclerosis diagnosis used to mean the beginning of the end. Now it’s just the end of the beginning.

It wasn’t too long ago that two words — multiple sclerosis — evoked visions of unrelenting disability, loss of function, sadness and isolation. But at the end of the last century, a more positive perspective emerged, following the approval of disease-modifying medications and a philosophical shift in the medical and health care of all those affected by multiple sclerosis.

Disease phenotypes have been tightened to portray the disease’s characteristics rather than a confusing spectrum of meaningless terms. Treatment is becoming more personalized based on individual characteristics and symptoms rather than based on a meaningless list or chart of descriptors.

A faster diagnosis There’s a new standard of care

— one which emphasizes the urgency of a prompt diagnosis by expert clinicians and enhanced by neuroimaging techniques that allow visualization of the brain and spinal cord. The McDonald criteria, developed within the past two decades, is updated regularly to facilitate the diagnosis of MS within days, rather than weeks or months. The original diagnostic criteria required documentation of neurologic episodes separated in space and time in order for clinicians to confirm a diagnosis of MS. This resulted in delays of months or years before people with MS were diagnosed and treated.

The McDonald criteria substitutes specified criteria based on neuroimaging to confirm the patient’s diagnosis and facilitate prompt and appropriate treatment. In less than 50 years, the

June Halper CEO, Consortium of Multiple Sclerosis Centers

mantra surrounding MS went from “diagnose and adios” to “treat and beat it” thanks to disease-modifying therapies.

Making it personal This new philosophy recognizes the importance of the patient’s voice — my disease, my symp-

toms and my responsibility — and expands with the concept of partnerships.

Starting from the first symptoms, the patient is best served by seeking care from knowledgeable and experienced professionals. Comprehensive care, along with symptomatic management, encompasses the newest philosophy of MS care. Based on an evidence-based understanding of MS, the role of the MS clinician has been transformed from a supportive, educative role to that of a highly skilled, knowledgeable and specialized professional who is part of a multi-discip l i n a r y te a m d e d i c a te d to a patient’s continuing care.

More roles for care MS specialists impart knowledge, medications, wellness activi-

ties, reduction of risks and side effects, and facilitate self-management to promote sustained adherence. Regular contact with patients, a consistent level of care, a trusting relationship and a greater understanding of prescribed treatment have resulted in a knowledgeable and competent population of patients and their families.

New day, new battle The history of MS has been a rich and dynamic tale but the story has not ended. We will continue to seek better treatments and better care with a goal of conquering this complex condition with a cure.

In the meantime, we shall continue to strive to improve the quality of life of all those affected by multiple sclerosis. n

Publisher Stephanie Sherman Business Developer Mac Harris Managing Director Luciana Olson Designers Tiffany Pryor, George Kalache Copy Editor Jeremy Binckes Director of Sales Shannon Ruggiero Director of Business Development Jourdan Snyder Director of Product Faye Godfrey Lead Editor Mina Fanous Production Coordinator Josh Rosman Content Strategist Vanessa Rodriguez Cover Photo Julie Newell Photography. All photos are credited to Getty Images unless otherwise specified. This section was created by Mediaplanet and did not involve USA Today.

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How Innovative MRI Technology Is Helping Optimize MS Patient Diagnosis and Long-Term Treatment SPONSORED

“No matter how the patient’s head is positioned, AIRx™ will place those slices in the same location, reducing variation amongst different technologists,” says Heide Harris, clinical marketing applications manager, global MR for GE Healthcare.

MRI, short for magnetic resonance imaging, is a medical scan that uses strong magnets, radio waves and computers to take detailed pictures of tissues inside the body.

The U.S. Food and Drug Administration reports that millions of MRIs are performed each year. They’re frequently and efficiently used to diagnose and treat patients who have multiple sclerosis (MS), a disease of the central nervous system, as well as aiding in the diagnosis and monitoring of other neurologic conditions, including Alzheimer’s disease, headaches and brain tumors.

Advanced imaging “MRI has really changed the way we can practice medicine,” says Staley A. Brod, a professor of neurology and chief of neuroimmunology and multiple sclerosis at Medical College of Wisconsin.

MRI provides confirmation of a disease such as MS. Then doctors can try therapies and monitor

PHOTOS: GE HEALTHCARE

Since the first MRI was conducted on a human patient in 1977, the technology has significantly advanced.

QUANTIB BRAIN SOFTWARE compares progression of MS disease from previous scans, including counting the number of lesions in the MS patient’s brain and measuring differences in white and gray matter tissue, as well as fluid in the brain.

the patient’s progress in followup exams.

Dr. Brod says much of the disease process for patients with MS is “under the radar” and difficult to see. Imaging done consistently from one scan session to another can provide great detail.

“The spatial resolution has improved over time and we’re able to see even smaller changes in the disease,” he says, noting MRI results often show 5-10 times more than what doctors can see from clinical symptoms.

Precision health GE Healthcare, a medical technology and life sciences com-

pany, has over 4 million imaging, mobile diagnostic and monitoring devices installed across the globe. Physicians are using these sophisticated imaging systems to help optimize patient diagnosis as well as provide longterm care.

The company’s focus is on precision health — to help ensure that the right actions are taken at the right time for each and every patient.

“GE Healthcare is developing tools that improve patient satisfaction and empower radiologists with precise information to aid in diagnosis and better patient outcomes,” says Suchan-

drima Banerjee, the global MR neuroscience manager for GE Healthcare.

MRI, a state-of-the-art technology, provides consistent results.

GE Healthcare technologies include AIRx™, which uses a deep-learning approach to automatically detect and suggest “slices” (image locations) for neurological exams and deliver consistent and quantifiable results from scan to scan. Software, such as Quantib™ Brain, uses machine-learning to identify where lesions are in an MS patient’s brain, while color coding new and old lesions and measuring brain volume.

Holistic approach Technology advances from GE have brought increased speed, comfort and improved image quality. Patients can now lie on their backs and be scanned from head to toe, front to back and side to side without ever having to move.

“Thanks to new MRI technology we can reach high quality results to give patients a confident answer about their diagnosis,” says Dr. Pascal Roux, a neuroradiologist at the Centre Imagerie du Nord in Paris.

The technology is faster too. He says 10 years ago an exam took 25-35 minutes. Now many exams can be completed in about 10 minutes.

One of his patients, a 45-yearold man, went to the emergency room with sensory problems. An MRI scan of his brain showed he had inflammation from MS. A 29-year-old female patient had blurred vision; after imaging, she was diagnosed with optic neurosis and MS. Overall, MS patients are optimistic about the advances in MRI technology.

Dr. Brod says, “They’re very excited to be a part of the imaging advances that might help MS patients in the future.” n Kristen Castillo

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PHOTOS: MULTIPLE SCLEROSIS FOUNDATION

A Teen Diagnosed With Multiple Sclerosis Is Making a Difference

Sean was diagnosed with MS in high school. Now he’s made it his goal to help teens who are dealing with this lifechanging diagnosis.

“When it comes to MS, if you haven’t got it, you don’t get it,” Sean Giblin often says. Sean gets it. He understands the unique challenges of getting an MS diagnosis as a teen.

Sean is a support service coordinator at MS Focus, a multiple scle-

rosis hotline, offering guidance and resources. Now in his late 20s, Sean was diagnosed at age 16.

Anything but normal “Being diagnosed in my sophomore year of high school, I just really didn’t think about it too much,” Sean says. At first, he had a normal high school life: studying, learning to drive and hanging out with friends. But Sean’s MS turned out to be an aggressive form of the disease. “My type of MS was a complete switch-up,”

he says. “When it starts to affect you hardcore, like it did with me, everything just gets put on hold.

Things get way more difficult.”

By junior year, Sean had a port surgically placed in his chest for a procedure called plasma exchange. He often had to leave school early for doctors’ appointments. “Friends would ask about it and when I’d show them, they’d say, ‘That does not look like fun.’ I would agree with that,” Sean says.

“It’s definitely not fun. Maybe one or two of them couldn’t handle it

and dropped out of my life. But in general, they were pretty cool with me.”

An achievement With good friends, supportive parents, and a lot of determination, Sean pushed through. “For me, the thing that made me feel the best was getting my diploma,” he says. They called my name, and I walked across the stage with my walker. The cheers I got really surprised me. I didn’t realize that many people cared. I really felt

the appreciation for what I went through to get to that point.”

Today, Sean has a message for teens who are diagnosed with MS: “Life is not over. You’re on a roller coaster. It will be up and down, up and down. Read about MS so you understand what it’s doing to your body and how to manage it.” And if you need to talk to someone who gets it, call (888) 673-6287 and ask for Sean. n Kasey Minnis, Director of Communications, Multiple Sclerosis Foundation

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For Multiple Sclerosis Patients, Transportation Is a Big Problem Every trip counts. And for someone dealing with an MS diagnosis, figuring out how to get to appointments isn’t always easy to manage.

More than 1 million people in the United States are believed to be living with multiple sclerosis (MS). With approximately 200 new cases diagnosed every week, a growing number of people find themselves overwhelmed with medical appointments, prescriptions and a new reality to which they must adapt.

One battle is missed appointments.

No-shows are expensive, costing the health care industry more than $150 bil-

lion a year. Patients have it worse; those who regularly miss appointments are more likely to battle with chronic conditions and prolonged medical concerns.

A lack of transportation accounts for an estimated 3.6 million annual no-shows.

Transit operators, health care providers and communities across the country are working hard to dramatically shrink this number by providing access to safe, reliable transportation — the type of mobility local transit providers offer every day.

Routing your ride without breaking the bank If you are covered under Medicaid, you can take advantage of the program’s

non-emergency medical transportation (NEMT) benefit, which allows you to ride your local, regional or state public transportation system at no additional cost.

Private health insurance plans are offering more options for NEMT services.

Reach out to your local transit operator to learn if they provide services close to your home and destination or if they offer on-demand service. Ask your health care provider if they can assist with paying for and scheduling trips.

As an MS patient, you could be facing more than seven medical appointments a week at first — ranging from neurological to optometry — then decreasing in number as your symptoms become more

controllable. Working through your transportation options might seem daunting, but by following the steps above, it can become manageable.

Transportation: A solution, not a hurdle As research is closing in on a cure, communities need to continue to work together to support those living with MS. Effective transportation should not present itself as a barrier during treatment.

Your local community or public transit organization is here to serve you. n Scott Bogren, Executive Director, Community Transportation Association of America

WE GO WAY BEYOND THE CHAIR. Our chairs are one of a kind. So are our employees, like Zach.

We make it our mission to go above and beyond so that every client gains the independence and self-reliance they deserve. Clients like Jane, who was diagnosed with MS over 20 years ago. To read Jane’s story, visit NSMLetsGetMoving.com.

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When Your Prescription Is Changed Without Warning In all but six states, insurance companies can pull a baitand-switch when it comes to your medication.

Sometimes the medication a patient is prescribed is not the medication they receive.

Non-medical switching refers to a common tactic in which a patient’s medication is changed — typically at the behest of the health insurer — for reasons other than the patient’s health.

Many patients who are managing a chronic autoimmune disease such as MS are treated with a specialty medication such as a biologic, which is classified as a highcost, high-complexity medication usually administered as an injection or infusion.

Health insurers frequently review their formularies and adjust their coverage tiers and policies regarding specialty medications throughout the year. In most of the United States, health insurers can change their coverage at any point during the plan year, forcing a patient to switch medications or incur higher out-of-pocket costs. This tactic is often referred to as “bait-and-switch.”

Why most Americans are in danger Only six states — California, Illinois, Louisiana, Maine, Nevada and Texas — have passed legislation that protects their patients from mid-year coverage changes made by a commercial health insurer. In the rest of the country, patients are susceptible to being switched off the medication that is effectively managing their condition, push-

ing them to a less expensive, alternative medication that might not be as effective.

For patients whose health depends on the timely administration of their prescribed specialty medication, a switch can result in a variety of adverse effects that can drive up the economic burden of disease, such as increased visits to the hospital or emergency room, re-emerging symptoms or new side effects.

Fighting the change The National Infusion Center Association (NICA) is a national nonprofit organization that serves infusion patients and their providers through advocacy, education and resource development. In 2018, we were active in improving protections against non-medical switching in Connecticut, Florida, Illinois, Indiana, Iowa and Pennsylvania. Additionally, NICA joined the steering committee of the Coalition for Stable Patients in Texas in order to improve statutory protections for patients against non-medical switching, and will continue working with the Texas Legislature to protect patients against unnecessary non-medical switching practices.

In 2019, NICA will be active in every state planning to introduce a bill proposing patient protections from non-medical switching and “bait-and-switch” tactics.

We believe that restricting non-medical switching for patients on specialty medications will not only protect their health but also the physician’s role in managing their care. 

Amy Rios, Communications Coordinator, National Infusion Center Association

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Bryan Bickell’s Pit Bulls Are Helping People With MS

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hen Bryan Bickell was diagnosed with multiple sclerosis (MS), his professional hockey career with the Chicago Blackhawks came to an end. But, as the saying goes, when one door closes, another one opens. In Bickell’s case, that new open door allowed the father of two daughters to fuse two of his passions: helping others with MS while battling the pit bull stigma.

“We started our newest program with service dogs for MS as a way to turn a tragedy into something positive,” says Bickell, 32, who runs the Bryan and Amanda Bickell Foundation with his wife.

The road to a diagnosis As with other autoimmune con-

ditions, such as celiac disease and rheumatoid arthritis, MS symptoms occur when a person’s immune system attacks his or her healthy cells. With MS, those healthy cells are the fatty material, called myelin, that surround the nerve fibers, according to the National Multiple Sclerosis Society. MS symptoms include walking difficulties, stiffness and muscle spasms, tingling and numbness, vision problems, and vertigo and dizziness. Although no two people with MS have the same symptoms, those with the condition are also more prone to depression than those without the condition.

Before Bickell was diagnosed with MS, his doctors suspected simple vertigo or a tooth infec-

tion. When his family learned the answer, their reaction was “total shock,” he says. “Having an answer gave us something to focus on and make a plan to tackle.”

Bickell says that he has tried to approach the diagnosis with a positive attitude. “While this was not something we were planning on dealing with or something to celebrate, we decided early on that we were not going to let it define us and that we would remain positive, look for the best in our circumstances and use the diagnosis as a catalyst to help others also living with MS,” he says.

More than MS The Bickells expanded the purpose of their foundation, which they initially formed to connect abused

children with pit bull therapy dogs as a way of helping the children heal — and as a way of reducing common misconceptions about pit bulls being aggressive.

“The results of that program have been amazing,” Bickell says.

“We have seen shy kids deathly afraid of dogs blossom and open up and tell the dogs things they haven’t been able to say to adults.”

Humanity’s best friends Pairing pit bulls that they train with people who are struggling with MS was a natural progression for the foundation, as service dogs can help address many of the difficulties these individuals face on a daily basis. A service pit bull can help someone with MS retrieve a dropped item, attain balance

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as they walk, turn lights on and off, open doors, seek help from a caregiver in the house and quietly navigate the world outside their home. “Assistance dogs also offer therapeutic emotional support and companionship,” Bickell says.

The Bickells plan to train more service dogs to increase their impact in the MS community. “ We hope to offer additional opportunities to individuals living with MS through the creation of a network of support, and opportunities for retreats and outdoor experiences,” Bickell says. “By continuing to share my story, I hope that it inspires others living with MS, especially those newly diagnosed.” n Melinda Carter

We’re Storytellers With a Purpose.

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