About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

Back to School: The Importance of Rest and Recovery

Posted on September 9, 2015 by MSAA

By: Meagan Freeman

As a mother of 5, I have always looked forward to that special time of year when my children head back to school! It was a long, hot summer this year, and I spent my days without the usual daytime break I always need during the school year. Summer can be incredibly difficult for parents with MS, and children are often left bored at home, looking for entertainment. Temperatures often hit the 90s-100s in my area, and on those very hot days I was left a virtual prisoner, trapped at home in the A/C with children who were not often pleased. Most MS patients require a certain amount of rest during the day, and noise can become a tremendous irritant. Without a break, we often become fatigued and emotionally spent.

My children returned to school early this year, on August 24th. My oldest left for college this year, and it was surreal to help him pack up his things and head out. Though I was saddened a bit, I also thought to myself with a twinge of guilt: “Check one off the list!” The first day back was chaotic, dragging exhausted children out of bed early and forcing them to dress, eat breakfast, and get out the door begrudgingly by 7:45 AM. I have found that planning ahead and organization are the keys to success with a large family, and I always spend the evenings preparing everything needed for the morning. Lunches and snacks are packed ahead of time, clothes are in piles according to child, and backpacks are in a neat line ready to be carried out. I have issues with memory loss at times, and I find that failure to plan ahead leads to disaster. I recommend using electronic devices to plan out calendars for the week, setting “alerts” for important times and events. After forgetting to pick children up on early dismissal days several times last year, I have learned to mark out the important pick up times well in advance.

We jumped in the car on that first day of school, everyone in new outfits and excitement in the air, and made our way around town to multiple schools, into new classrooms and new adventures. After the last child left the car, I drove home slowly, sipping my coffee with a sense of great relief. I walked in the door of my home, to a quiet and peaceful spot for the first time in months. I took a deep breath, and realized that at last, I had some free time for myself.

Through these yearly experiences, I have come to understand that I need time for rest and rejuvenation. It is not a luxury for me, but rather a medical necessity. Without a chance to “recharge the batteries,” we just don’t function well as mothers and fathers with MS. Though childcare can be incredibly expensive during the summer, I would advise all parents with MS to factor in some time to rest. Those precious quiet moments are exactly what the doctor ordered, and we should all begin to see rest as a medication or a treatment, something that our disease demands. Even if a friend or family member might give you a bit of respite and take the kids for a few hours occasionally, this would be of great benefit. We should all take a bit of time to care for ourselves, so that we might care for our families in the best possible way. Happy Back to School!

*Meagan Freeman was diagnosed with RRMS in 2009, at the age of 34, in the midst of her graduate education. She is a Family Nurse Practitioner in Northern California, and is raising her 6 children (ranging from 6–17 years of age) with her husband, Wayne. She has been involved in healthcare since the age of 19, working as an Emergency Medical Technician, an Emergency Room RN, and now a Nurse Practitioner. Writing has always been her passion, and she is now able to spend more time blogging and raising MS awareness. She guest blogs for Race to Erase MS, Modern Day MS, and now MSAA. Please visit her at: http://www.motherhoodandmultiplesclerosis.com.

Do the Patient Billing Double Check

Posted on August 28, 2015 by MSAA

By: Matt Cavallo

Raise your hand if you went to school to understand medical billing? My best guess is that the majority of you did not raise your hands.

Alright, this time raise your hand if you understand the difference between a medical bill and explanation of benefits. Again, my best guess is that most of you did not raise your hand.

An explanation of benefits (EOB) is a statement summary of charges sent by your insurance company about an episode of care. The EOB is an FYI of what is covered or not covered, but it is not necessarily an accurate reflection of your medical bill.

Your medical bill will always come from the facility that you received the medical service. These bills will state the billed cost (what the facility charged your insurance), insurance reimbursement amount (what insurance paid to the claim generated by the facility) and the patient responsibility (the amount you owe).

Now, the patient responsibility part of the medical bill requires you to do a double check to ensure that you are paying the correct amount. Often times the patient responsibility can be inaccurate if it wasn’t coded properly. This is especially true if you have some special situation like financial assistance for a specialty treatment.

Take me for example. For my MS medication, I have a financial assistance program offered from the pharmaceutical company that manufactures my treatment.

As an aside, if you are not aware whether or not your pharma company offers a copayment assistance program or if you qualify, that information is generally listed on the pharmaceutical company’s website.

Back to my story. So, the terms of my financial assistance program state that I am responsible for a $10 copayment for each treatment. Therefore, if I am billed $10.01, the medical billers are off by a penny and I can dispute the charge.

I started receiving bills that were over $100 per treatment. These bills also matched the responsibility on my EOB, so it stands to reason that I would be responsible right? Wrong.

I do have a background in medical billing. I used to manage a hospital clinic and we had this problem all of the time. The problem is that the financial assistance programs require a different workflow than traditional medical billing. A lot of time the billers are unaware of how to apply these financial assistance programs or they are not marked properly in the medical chart.

If the medical biller does not apply the financial assistance program to the bill, then an erroneous charge is generated. As a patient with a financial assistance program, you are not responsible for this error. The problem is that you may not always know that you are not responsible. You think that since the bill matches the EOB that it must be right. This is not always the case and it is contingent upon you to be your own advocate.

When I started getting these billing errors, I took action. I called the 1-800 number on the bill and I contacted my pharmaceutical company to let them know. My pharma company reached out to the medical billers and that bill was resent stating that I only owed $10!

Doing a double check, I saved myself $90. This has happened to me a couple times after the initial erroneous bill. Each time I called and each time I was only responsible for $10 per visit. By now, I have saved over $500 this year by doing my double check and not being afraid to pick up the phone and question the bill.

From my time managing the clinic to situations with me and my family, to helping friends of mine, there are any number of reasons why double checking your bill can be beneficial. One last story, my wife got billed an out-of-network lab draw for a well woman exam at an in-network facility, generating an over $700 bill. Bills are generated by computers, but people are in place if you have any questions regarding the bill. After we got over the sticker shock, I said let’s call. We were responsible for our $25 copay and that was all!

Being a patient with multiple sclerosis is tough. Don’t let medical billing errors make it any tougher. Remember to be your own advocate and if you are questioning a bill, don’t be afraid to pick up the phone and do the patient billing double check!

*Matt Cavallo was diagnosed with multiple sclerosis in 2005. Matt is an MS blogger, author, patient advocate, and motivational speaker. Matt also has his Master’s degree in Public Health Administration. Matt is the proud father of his two sons, loving husband to his wife, Jocelyn, and best friend to his dog, Teddy. Originally from the Boston suburbs, Matt currently resides in Arizona with his family. To learn more about Matt, please visit him at : http://mattcavallo.com/blog/

Insurance Open Enrollment is Fast Approaching

Posted on August 24, 2015 by MSAA

Open enrollment is fast approaching! November 1, 2015 marks the first day to enroll in a 2016 Marketplace health insurance plan.

During the 2015 open enrollment period 11.7 million people had enrolled in a Health Insurance Marketplace plan. While many of these enrolled individuals will continue with their selected plan, if you are unhappy with the insurance plan purchased for 2015, the open enrollment period exists to allow those who had previously purchased health insurance through the marketplace to make a change to their current plan. Maybe your doctor has changed, or you would like to try a new MS treatment. Searching for plans that match your needs can easily be completed using the Healthcare.gov Marketplace.

From November 1st, through January 31st 2016 individuals can make changes to their current plans. While the changes made do not take effect until January 1st, this provides individuals with the time needed to make a decision on which plan will work best for their needs.

For those who are new to the Marketplace and purchasing insurance for the first time, MSAA’s Health Insurance Guide, is a valuable resource aimed at assisting the MS community with understanding the many details surrounding today’s health insurance options. Using the PLAN Ahead model (Prepare, Look, Analyze, and Name), MSAA’s Health Insurance Guide provides a comprehensive overview of what should be evaluated when purchasing a plan.

Still confused about the Affordable Care Act, or how the Insurance Marketplace affects you? MSAA has created an informative webinar to better explain the process titled What You Need To Know About The Affordable Care Act. Additional webinars can be found within the MSAA Health Insurance Guide, including The New Insurance Marketplace and MS .

References:
http://kff.org/interactive/mapping-marketplace-enrollment/

Insurance and Planning with Multiple Sclerosis

Posted on August 19, 2015 by MSAA

As we highlight and discuss various insurance related topics this month, we wanted to share some additional material that has been written over the years to continue to educate the MS community and to continue the thought process around planning with MS.

In Planning for the Future: Long-Term Care and Advance Directives a difficult topic is discussed around end-of-life care and making arrangements for a nursing home while still relatively young and relatively healthy. While the topic of advance directives can be a morose one, it is important to at least discuss your wishes with your family. Unfortunately, we do not have a crystal ball to tell the future, but having a plan can at least ensure your well-being.

“Nobody ever really wants to think about what needs we may have in the future, but there comes a time when each of us should consider what future plans we would like to make if challenging circumstances do arise.” In the Advanced Planning blog from 2012, we continue the discussion of planning with MS to discuss how examining issues before they arise provides control over our wishes.

For some individuals, there may be a time when MS symptoms create change that requires additional assistance in the home, to try to help manage daily activities and duties of the household; Getting Help at Home When You Have MS discusses the various types of supports to individuals in their homes, and ways to navigate the assistance.

Continue to check back with the MS Conversation blog this month for more helpful information and guidance.

Medical Necessity: Advocating For Needed Treatments

Posted on August 10, 2015 by MSAA

By: Meagan Freeman

As a Nurse Practitioner, I became extremely familiar with dealing with the often-frustrating denials by insurance companies, particularly when it comes to prescription drugs. After all, I am the one who holds the professional medical degree, and I am the one who should be determining what treatments my patients required, not an insurance adjuster.

The problem is, insurance companies often have a policy of “automatic denial” for expensive prescription drugs. This policy means that no matter what the circumstance might be, they will always issue a denial when an expensive medication is ordered. This policy may be a deterrent for new providers and patients, and may lead to an unnecessary change in treatment, opting for a less expensive drug that is less effective.

When dealing with insurance companies, my experience has led me to realize that it is incredibly important for providers to immediately argue the case, rather than to simply accept this automatic denial of needed treatment. I often find that a simple phone call to the insurer, with my insistence that the treatment was a medical necessity, and that no other alternative would be acceptable, is all that is needed for an eventual approval. These automatic denials are in place in order to save unnecessary expenses for insurers, whose main focus is always the bottom line. These are not medical professionals on the other end of the phone, and their opinion is not more important than your treating provider’s.

With the new affordable care act, all insurers are required to offer at least one covered medication in each disease category, and cannot deny patients needed medical treatments. Thankfully, no patient can be denied for coverage any longer due to a pre-existing condition such as MS. Our illness is one of the most expensive diseases to treat, with drug prices often exceeding $50,000 per year. This means that we need to become very skilled at advocating for ourselves as patients. If you are told that a necessary treatment was denied by your insurer, let your provider know that you would like them to make a call and argue the medical necessity of the treatment. A simple phone call is often enough to sway the initial opinion, and this simple step is well worth the time if it leads to coverage for a needed multiple sclerosis treatment. If your provider will not take the time to appeal a denial, you may need to consider finding a new provider. Your provider should always be your advocate, no matter what the circumstance may be.

Journaling My Story (MS)

Posted on July 24, 2015 by MSAA

By: Matt Cavallo

In July of 2005, I was in a deep depression. I had just been diagnosed with multiple sclerosis in June of 2005 and I was in the midst of an internal struggle trying to come to terms with being newly diagnosed.

I have a family history of MS. My aunt had MS and died when I was only four years old. Her MS progressed quickly and she left us at a young age. Watching me lose my ability to walk was particularly hard on my family who couldn’t help but think of my Aunt Loretta when looking at me. It was like they were reliving a scene from my aunt’s life that did not end well.

Those emotions that my family experienced in watching my aunt progress through her disease were awakened as I started to progress. Unintentionally, those emotions were transferred to me making it impossible to cope or come to terms with my diagnosis. So, I did what I always do, and turned to the pen.

You see, I’ve been writing since I was a small boy. Whether it was poems or short stories, writing was always therapeutic for me. So when my symptoms first presented themselves, I started keeping a journal of what I was experiencing.

At first, the journaling was very helpful for my memory. Then, as I got admitted to the hospital, I used my journaling to capture the patient experience. I had never been in the hospital before and between the pain meds and all of the tests, I wanted to capture all of this information in my journal so that I could refer back to it when I was discharged.

Little by little, my journal began to grow. I had captured my symptoms, my hospital stay, follow-up doctor’s appointments and now I was capturing my depressive thoughts as I struggled coming to terms with my new fate. I just had no idea what path in my life my journaling would take me on.

Then it happened. I found myself sitting in my pick-up truck at the beach, listening to the waves crash. All of a sudden, the song Moonshadow by Cat Stevens, popped into my head. I used the inspiration from that moment to carry me to Barnes and Noble.

At Barnes and Noble, I wanted to find a personal story of the diagnosis that I went through. I wanted to hear another person’s story, so that I would know that I was not alone. However, the books on the shelf were all technical or diet manuals about MS. Disappointed, I returned home and pulled out my journal.

As I flipped through the pages of my journal, I could recall my symptoms, my emotions, my fears. It was at that moment that I realized I was reading the story I was searching for. It was all in my journal. I would spend the next couple of years transforming my journal, into my memoir. Now, in an ironic twist of fate, Barnes and Noble carries The Dog Story: A Journey into a New Life with Multiple Sclerosis.

My journal has been transformed into the very thing I was seeking. Now it is a resource for other people who are experiencing the diagnosis I had faced all those years ago. Today, I continue sharing my journal though my books and my blogs. Sharing my story with the world has been the most rewarding and humbling experience for me. My best days are always when a reader reaches out to me and lets me know that my story helped.

Journaling doesn’t have to lead to writing a book or blog, but it is an important way to remember how you were feeling at a certain place or time in your life. How are you sharing your story? There is someone in your life right now who may not understand what you are going through. When words fail you, write down your thoughts and feelings and share with that person. If you can’t write, keep a picture journal or scrapbook. You will both be glad you did.

Greetings from the Northeast Region!

Posted on July 20, 2015 by MSAA

By Lauren Hooper

Greetings from the Northeast Region! I hope everyone has been doing well and keeping cool in these warmer months. Now that we’re in the thick of summer, we take a bit of a hiatus with educational programming in the Northeast, but come early fall, we’ll be in full swing again. We have more than 25 patient programs in this region alone and dozens in each of the other regions as well that we’re starting to schedule for the last half of 2015, so please keep your eye on our calendar of events to see if there are any coming up in your area. Here are some topics that we at MSAA are going to be bringing to various cities nationwide this fall and winter:

“Hot Topics in MS,” which focuses on the latest research and news in MS
“Swim for MS” programs focusing around how swimming and aquatic exercise can benefit those with MS
“Women’s MS Educational Summit” programs which specifically are targeted for women
“MS Educational Day for the Patient & Care Partner,” which is a series that will target both those with MS and the people that care for them, with care partners sitting in on a separate session to discuss how to take the best possible care of someone with MS and themselves
“Open Forum” style programs, which are much more informal and interactive, where the presenter will lead more of a discussion and focus heavily on Q+A from the audience
Larger “MS Education Conference” programs for patients and their families with multiple presenters at each program who will talk about their respective fields of expertise in the MS world (i.e. neurologists, nurses, PTs, OTs, etc.)
“The Day to Day Treatment of MS,” which will include a discussion on adherence & relapse management
“Research Advances in MS,” which will bring the most up-to-date information about what’s new and what’s in the pipeline to attendees

These are just a smattering of our educational offerings and we are constantly adding new cities and topics to our list, so please feel free to reach out to us if you have any suggestions for topics you’d be interested in learning more about! If you happen to be a resident in one of the states I cover, I hope to see you at a program this fall! If not, I hope you’ll visit one of my fellow directors in your region at a program near you!

* Lauren Hooper is the Northeast Regional Director at MSAA.

Highlights from the 2015 Annual Meeting of the CMSC

Posted on July 15, 2015 by MSAA

MSAA has posted a new online article providing highlights from this year’s Consortium of Multiple Sclerosis Centers’ Annual Meeting held in Indianapolis, Indiana in May. MS experts from around the country attended this exciting conference where the latest findings in MS research, treatments, symptom management, and patient care were presented.

Topics highlighted in this article include updates on MS disease-modifying therapies and findings from several cognitive and psychosocial studies. Various lifestyle factors such as diet, nutrition, and exercise are addressed in detail as well. The article also provides information on other topics of interest, such as diversity in multiple sclerosis, caregiver stress, gut microbiome, and more.

Read the full article on highlights from this year’s Consortium of Multiple Sclerosis Centers’ Annual Meeting.

If you missed MSAA’s article summarizing data presented at the American Academy of Neurology’s 2015 Annual Meeting in April, please check it out here.

Journaling as Therapy for Multiple Sclerosis

Posted on July 13, 2015 by MSAA

By: Meagan Freeman

Unfortunately, things do not always work out the way we want them to. Marriages end, friendships change, and illness sometimes make our decisions for us. I often find myself worrying about the future, and thoughts invade my mind during stressful moments. Will I ever have the chance to swim on a beach in the Mediterranean? Will I see Europe the way I have always wanted? Will my children be embarrassed to be in public with me with my assistive devices? Boy, my thoughts can sure get dark at times, and anxiety can take hold and pull me out of reality very quickly if I allow it to.

Writing can be the most therapeutic experience.

No matter what challenge I am coping with, I find that if I sit down and pour those feelings onto paper, I am refreshed and renewed. It is much like traditional therapy with a counselor, except the paper is your therapist. The words are your medication, and the process of putting your thoughts and emotions into words is your cure.

I am a rather shy person, and some would say I am quiet and private. I have a few extremely close friends and family, but I keep my circle small. The interesting thing is, when I sit down to write I have no trouble communicating and expressing my feelings. Words are my favorite form of expression. Whereas spoken words leave your mouth and cannot return, written words can be erased, changed, and edited after you have reviewed them.

When coping with a chronic illness like MS, expression of feelings is incredibly important. It is so easy to feel alone and without friends who understand. Journaling and writing are great options for those who feel uncomfortable talking. “People who journal find a higher sense of self-awareness and are able to reduce anxiety and gain a sense of empowerment. Many people who struggle with deep emotional conflicts or traumas are unable to express their feelings in a verbal or physical way. Journaling allows a person the freedom of expression without fear of retaliation, frustration, or humiliation.” (http://www.goodtherapy.org/journal-therapy.html#)

My journaling experience has evolved into my blog, and eventually became my recently published book. My hope is that my writing will continue to help me express the feelings I have about each challenge with MS, parenting, and life in general. In addition, I may have the opportunity to continue to heal others through this writing.

In my practice as Family Nurse Practitioner, I encouraged my patients to journal when traditional therapy was not appealing to them. Some of my patients used writing as an adjunct to traditional therapy, and found it extremely beneficial. From the feedback I received from my patients, my suspicions about the therapeutic effects of writing were confirmed. I would encourage anyone coping with illness, trauma, death, or simply life stress to try jotting down a few ideas onto paper. The following are excellent resources for journaling as therapy:

http://www.goodtherapy.org/journal-therapy.html

http://www.psychologytoday.com/blog/arts-and-health/201311/top-ten-art-therapy-visual-journaling-prompts

Have a Safe and Fun Fourth of July!

Posted on July 3, 2015 by MSAA

MSAA’s offices will closed on Friday, July 3rd, in observance of Independence Day. We will be back to normal operating hours on Monday, July 6th.

Also please note our new address:

375 Kings Highway North

Cherry Hill, New Jersey 08034

Our phones numbers, email addresses, and website URL (www.MyMSAA.org) have not been changed. Please update your records accordingly.

We hope everyone has a safe and enjoyable holiday weekend!

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