You Are Your Own Best Advocate

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Recently I went to my primary care doctor for an annual flu vaccine and physical exam to make sure everything was in check. I paid my copay when I arrived at my appointment per usual protocol, but after reviewing the Explanation of Benefits (EOB) from my insurance company that came in recently, I realized the appointment was considered preventative and I should not have had to pay my copay amount. After noticing this I called my doctor’s office and they told me that in fact there was now a credit on my account of the copay amount that I had paid. They asked me if I wanted it to stay on my account as a credit or if I wanted to be refunded the amount. This made me scratch my head in perplexity, because I realized if I hadn’t reviewed my EOB from the insurance company and contacted my doctor’s office myself, I would’ve essentially been left in the dark about this copay credit until maybe I’d gone to my primary care doctor next year and was surprised with the copay credit on my account.

I feel like this happens often to individuals who are just trying to follow up with and maintain their medical care. I think this is why it’s so vital to be your own advocate when it comes to reviewing insurance information and benefits because there are not many on the other side that will do this for you, be it insurance companies or medical offices. Now don’t get me wrong, there may be some representatives who are diligent and careful in their work and do their best to ensure accuracy, however, this may not always be the case so it’s good to check and re-check things on your own as well. Human error can occur and mistakes can happen, but if you’re not aware of your own benefits and coverage this can slip under the radar and you could be paying for things out of pocket that you didn’t have to.

Insurance benefits and coverage can be a tricky thing to try to understand, so it’s important to take one thing at a time and to make contacts when you have questions. Calling the insurance company can sometimes be challenging so set aside time you know you can dedicate to this, or maybe your doctor’s office can help you navigate and understand your benefits. Sometimes you can use online customer support services to contact your insurance or connect to patient portals through your doctor’s office too. A relative, friend, neighbor or other resources in your community may also be able to help you decipher your insurance coverage. Again, you are your own best advocate when it comes to your care so being thorough and asking questions and reviewing your benefits is an essential part of the process.

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How Do You Create Space?

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Though it doesn’t feel like it in most of the country, Fall is officially upon us. There’s the activities and the get togethers. The smells and the lead up to… the holiday season! Arguably fall is my favorite time of year and easily also one of the most stressful. In gearing up for the pending holidays, trying to enjoy outings with loved ones and friends and preparing for the end of the year in terms of work and personal life (I’m someone who likes to file my taxes in January if I can help it to get them out of the way) I inevitably run into a wall of burnout. It’s not permanent and to be honest is totally avoidable if I just created some margin. I know, it’s easier said than done when the kids, the spouse, the job, the (insert religious organization you belong to), the neighborhood watch, the scout troop or sports team, the friends, the family…the lists go on… all need something and they need it soon. If you are anything like me you’re a doer. But doers…they need margin most of all. We have to build in safe guards and set boundaries to make sure that while we’re caring for and participating with others, we’re also monitoring and taking care of ourselves. That we don’t run into the situation that we run totally out of steam, burning the candle at all ends and find ourselves in the dark.

Like I said, it’s easier said than done but just think how much better you’d be if you weren’t laying under the desk completely done at the end of the week. So, what have I done to help create space and boundaries for myself? I have people in my life who understand my doer mentality and essentially pull the plug from time to time. They’re there and not only listen to the litany of items on my ever growing To-Do list but also challenge me and say ‘Can someone else pick up the donations from the restaurant’ ‘Who can you call to finish making the activities for the carnival’ ‘Do you need to volunteer to run another event’ and most importantly, ‘What have you done this week that’s just for you’. They ask not because they are nosy or because they are looking to judge or condemn me. No, they ask because I’ve let them in and given them permission to tap me on the shoulder when it looks like I’m headed for the red zone. And vice versa, I’m part of their team. Their team that pulls them from the edge when they’re baking for the 5th bake sale this month or about to volunteer to run the fundraiser that drove them insane last year. You should surround yourself with people who you trust to step into your life and help you keep up with the boundaries you need…not the Jones’ down the block. So how do you do it? How do you build in the buffer? Because creating space and implementing margins in our time and energy may not feel natural at first if you are a doer, but it’ll help keep you from smacking into the wall of exhaustion…and who doesn’t want that?!

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Butternut Squash Fries

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Welcome fall!  Here is a simple and delicious recipe for Butternut Squash Fries.  I am a sucker for anything fries.  This recipe is great with several dipping sauces too!  Be creative and have fun.

This recipe is also great for last-minute dinner emergencies.  If you need a side dish for a potluck or party, this would be a perfect go-to.

Ingredients:

  • 1 small (1-2 lb) butternut squash, peeled, de-seeded, and sliced into “fries”
  • 2 tbsp. olive oil
  • 1/4 tsp. salt
  • 1/4 tsp. garlic powder
  • 1/4 tsp. dried basil
  • 1/4 tsp. black pepper
  • 1/8 tsp. cayenne powder

Instructions:

  1. Preheat oven to 450F.
  2. Place the fries into a bowl with the olive oil. Toss until all the fries are coated. Season with remaining ingredients and mix until combined.
  3. Pour onto baking tray and evenly spread out so no pieces overlap. Place into oven and bake for 20 minutes. Flip, and continue baking for another 10-20 minutes or until desired crispiness is reached.

Enjoy!

 

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Dealing with Insurance Denials

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By Stacie Prada

Over the years I’ve appealed a lot of health insurance denials for different reasons.  I’ve dealt with getting denied for claims, denied for policy coverage, and denied for pre-approval for certain treatments. Each time I open the denial paperwork, I can literally feel my blood pressure go up. Now I have something to deal with on top of everything else.

I didn’t learn how to deal with these things in school. Yes, I learned to read, understand text and problem solve, but insurance paperwork is formal, in small print, and not always clear.  Getting denied creates an emotional response with financial consequences.  I see people shut down when they need to read legal paperwork, and I’m saddened when it costs them money they didn’t need to spend.  I’ve learned what to do by dealing with each denial one at a time. Thankfully so far, my experiences have been what I’d think of as the minor league level of insurance appeals where I was able to do them myself.

I’ve had to prove I’m not divorced or legally separated to continue coverage for my spouse. While we were in the process of getting divorced, I legally changed my name to my maiden name and gave them the judge’s order showing the name change.  My insurance company wanted proof I wasn’t divorced.  I was angry and completely stumped.  How do I prove I’m not divorced?  There’s not a judge’s document that shows a person is still married.  By talking to insurance representatives, they finally were able to tell me what kind of documents would satisfy them.  I had to provide them with our marriage certificate, my name change order (again), joint bank statements with the address they had for us, utility bills with both our names, and federal tax returns to show we were still filing as married. It took all of that plus a lot of effort on my part and time on theirs before they continued covering my spouse and re-processed his claims.

I had a provider that would bill the insurance provider and would receive no response EVERY time. We finally learned the routine. First, my provider would let me know the claim hadn’t been processed for a long time. I would then call the insurance company to ask about it, and the person on the phone would tell me it was in process and should be paid within the next week.  While absurd and seemingly a tactic used to avoid paying, I accepted it as part of the process with that company and my provider.

I’ve formally appealed my insurance company’s refusal to cover my disease modifying medication at a dosage of three days per week. I knew the daily dosage worked for me, but I couldn’t find seven different areas on my body to do injections each week without body tissue breaking down. I tried two other medications and lived with terrible side effects for over a year hoping they would subside without success. While appealing the insurance company’s denial, I lived without any disease modifying drug for six months.  It was stressful going without something that has been proven to slow progression of MS.  Not knowing if it would get approved or how long it would take compounded the anxiety the process caused me.  I wish it had occurred to me to look online for examples of appeal letters.  While mine was effective, it took me a while to write and was stressful worrying that it wouldn’t be successful.

I’ve had bills come through that have been denied because the provider billed the wrong insurance company. Just the most recent bill would have cost me $750 out of pocket if I hadn’t been paying attention.  It astounds me to think of all the money people are paying that they shouldn’t.  All because it looks like every step has been done and they’re told the remainder is their responsibility.

I know people who think that yelling at the company helps. Personally, I think yelling at the customer service representative is a waste of time. That person didn’t create our insurance system and isn’t the one creating policy at the company causing your frustration.  I think the people answering phones are just following orders and trying to keep their job to support themselves and their family.  Letting them know you’re frustrated is useful. Yelling and not listening increases the amount of time it takes to figure out what the issue is and what will help. It adds to my stress level and makes my life harder.  Advocating for my care doesn’t need to feel like a battle.  By being friendly, I’ve had pleasant interactions with insurance representatives that have brightened my day.

What I think helps me navigate insurance appeals:

  1. If you don’t understand the denial, call the insurance company and ask them to tell you what the reason was and what you need to do for them to approve or re-process the claim.
  2. Be pleasant to the person on the phone. If I’m upset, I’ll tell them, “I know this isn’t your fault. I’m really frustrated, so please bear with me.” I can hear the person on the phone relax, and it seems they’re more willing to help problem solve my issue.
  3. Accept that often you’ll need to provide things repeatedly. Sometimes it’ll be each time a claim is processed, others will be annually.
  4. Maintain good records of medical bills and payments. See my blog post for tracking medical bills if you want tips or a system: Creating Some Order In The Medical Billing Chaos.  If you haven’t kept good records, just call your insurance company and your medical provider to figure out what the status is and what you can do now.
  5. Open all medical bills or insurance statements when received to see what they say. It’s tempting to put bills and other mail in a pile for later, but that’s a habit that makes it easy to lose track of paper and time. Waiting will only compound some issues and leave you with less time to resolve them.  If it says it’s covered, you’ll know how much you owe. This may shape decisions you make regarding purchases.  And sometimes it’s good news!
  6. Keep copies of documents with medical insurance files so that you know what was provided in the past. It will also be ready to send again when they repeatedly deny coverage for the same issue.
  7. If feeling the tendency to shut down, take a break. A few minutes or days may be needed to be able to work on it again. Usually appeal deadlines I’ve seen are 180 days.  Know the timeline, and don’t wait until the end. Otherwise you’ll keep getting bills that can hang over you and cause anxiety.
  8. Share your experience with friends or coworkers on dealing with medical appeals. They often have experiences of their own with advice that may help you in your situation.  You may also be helping them be better prepared for dealing with their own insurance issues.
  9. For writing appeal letters, look online for examples. I searched for “prescription appeal letter,” and found many terrific examples to follow.  If you enter the specific name of the medication or device you’re trying to obtain with “appeal letter” you’ll find lots of tailored examples. If there isn’t one specific to your situation, use the others as a guide for how to convince your insurance company to approve it.
  10. Remember you don’t always have to figure out everything on your own. Look for your resources.  There are online suggestions from organizations about dealing with insurance.  Friends and family can often break down the issue to a level that’s manageable. If the stakes are really high, you may want to get professional assistance with your appeal.

Having a chronic condition that requires ongoing medical treatment is already frustrating and draining.  Learning how to navigate the insurance world and cultivating the patience needed to deal with it goes a long way. It can improve your medical care, reduce out of pocket expenses, and make life a lot easier than it might be otherwise.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Medicare Open Enrollment is Coming!

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On October 15th Medicare’s open enrollment period begins and lasts until December 7th. It’s during this time period that you can review your current Medicare plan and make changes if needed. You do not need to sign up for Medicare each year, but this is an important time when you should review your coverage to make adjustments if necessary, to ensure your health insurance needs are being met. And with the government currently discussing change that could potentially impact different parts of the healthcare system, it’s also a good time to stay up-to-date on this news as it unfolds.

Medicare beneficiaries who have a Medicare Advantage plan or Part D plan should receive paperwork called “Evidence of Coverage” or “Annual Notice of Change” letters from your health plan showing coverage outlines and any changes that will occur. It’s very important to review these materials to make sure of any changes in the plan’s costs, providers, benefits, drug formularies, etc. so that if something is changing with your plan, you are aware of it and can make changes to your coverage, if needed. These plans can change their benefits so it’s crucial to review your policy and any upcoming changes.

So, what can be done during the open enrollment period? According to Medicare, you can do the following:

Something else to keep in mind is that if you are not satisfied with your Medicare Advantage Plan, you can disenroll from that plan and join Original Medicare during the Medicare Advantage Disenrollment Period. This disenrollment period is open from January 1st to February 14th.

The Medicare website offers a Medicare Plan Finder where you can search for and compare health plans, benefits, coverage and estimated costs. You can also contact Medicare directly at 1-800-MEDICARE (1-800-633-4227) for information and questions.

For additional help, you can receive individualized assistance and guidance in choosing coverage through your State Health Insurance Assistance Program (SHIP). This resource provides one-on-one insurance counseling and support, visit https://www.shiptacenter.org/ to find your local office.

MSAA’s My Health Insurance Guide is a helpful source for the MS community to find more information about insurance options and resources, in addition to the Medicare Planning and Multiple Sclerosis brochure that helps to outline important parts and questions about Medicare coverage.

This is an important time to review your plan’s policy and make changes if needed to ensure that you have the appropriate coverage for your healthcare needs.

Resources:

http://www.medicareinteractive.org/get-answers/overview-of-medicare-health-coverage-options/changing-medicare-health-coverage/6-things-to-know-about-fall-open-enrollment

https://www.medicare.gov/sign-up-change-plans/when-can-i-join-a-health-or-drug-plan/when-can-i-join-a-health-or-drug-plan.html#collapse-3190

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Make Your Web Browser More Reader-Friendly

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Visual disorders affect more than half of all individuals with MS, which can make even simple tasks more difficult.  Everyday things take more effort and more time when your vision is impaired in some way, including reading or doing anything online.  In this day and age, almost everything can, or needs to be done online, making surfing the internet unavoidable.  While many websites make an effort to be visually interesting and engaging, as well as readable, it can still be a challenge to read the information on your computer screen.

Every web browser is different, but there are some tricks that you can use to make your online experience a little easier when looking for information on the internet:

  • Font Size – If the type on a web page is too small, easily zoom in to make the font larger by pressing the “Control” key (on a Windows computer) or the “Command” key (on a Mac computer) and the “+” key. To zoom back out, press the “Control” or “Command” key and the “-“ key.
  • Clickable Content – An easy way to navigate around a page to find a link you are looking for is to hit the “Tab” key on your keyboard while on a web page. This will start where you are on the page and highlight the first link within view. To move further down the page, keep hitting the “Tab” key until the link you wish to click is highlighted. If you accidentally go past the link you wanted to click, press and hold the “Shift” key then press the “Tab” key to go backwards up the page. Press the “Return” or “Enter” key to click a highlighted link.
  • Cluttered Page – Most web browsers also offer the option of a “Reader Mode” which will remove ads, leaving only larger text and associated images, making the page easily readable. Web browsers that offer this mode include: Chrome, Microsoft Edge, Mozilla Firefox, and Safari. These extensions or settings may not work on every web page, but they can make the overall online experience a little easier.

For more details on how to adapt your browser to meet your accessibility needs, visit the browser-specific links below:

What tips, tricks, and tools do you use to improve the appearance of what you are reading online?

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Stories to Inspire

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By Kaitlyn Gallagher

On a lovely weekend in mid-September, the Rock ‘n’ Roll Marathon Series took over Philadelphia’s Benjamin Franklin Parkway with thousands of dedicated runners. Whether participating in the 5K, 10K, or half marathon, runners represented countless nonprofit organizations with colorful shirts, logos, and team “swag” to raise awareness for their particular cause. I was lucky enough to represent #TeamMSAA as a runner in the Rock ‘n’ Roll 5K along with a few others, including another MSAA employee, Emily!

I felt a bit out of my element running in a large scale race that Saturday morning – I’m certainly no athlete and even spent a few weeks training leading up to the race to make sure I was prepared! However, there was one runner on #TeamMSAA that was no stranger to racing for a cause. John Derry Jr., our top fundraiser for the Rock ‘n’ Roll Series in Philadelphia, has run many times in support of different organizations. This year, John discovered that he could run in support of the MS community, and knew that he had to sign up for a very personal reason.

“MS has had a great impact on my life due to my grandmother having MS. My grandmother has shaped the man I am today,” said John. “I have been taking care of her my entire life. I am currently her primary caretaker. Over the years of caretaking I have grown to learn how to take care of others and pay attention to other’s needs.”

Meeting John was an incredible experience – he is a truly selfless person who not only takes on the responsibilities of caring for his grandmother, but spends his free time training and running to help others living with MS. He has taken his passion for running and turned it into a mission to serve others, and for that MSAA is extremely thankful! John raised over 700 dollars that will go toward providing members of the MS community with free programs and services like cooling vests, mobility equipment, MRI funding, and more.

John plans to continue running in other races, and is currently applying to get his Master’s degree to become a Physician’s Assistant, another decision influenced by his years as a caretaker. We wish John the best of luck in all of his future endeavors, and thank him on behalf of the MS community for his amazing work as a caretaker and advocate!

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October 2017 Artist of the Month: Celebrating the Work of Artists Affected by Multiple Sclerosis

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MSAA is very proud to present our 2017-18 Art Showcase – celebrating the work of artists affected by multiple sclerosis (MS).

We have received many wonderful submissions from across the country and are delighted to share their work and their stories with you. Please visit our online gallery to view all of the new submissions.

Karen Bloom – Kendallville, IN
Scarecrow in Cabbage Patch
Karen Bloom - Scarecrow in a Cabbage Patch

About the Artist:
“I was diagnosed with MS in 2008 and was a paraplegic within a year. Because my legs were affected so drastically, I expected the same of my arms/hands and sold my piano and gave away all of my oil painting supplies and most of the artwork I loved.

I received a service dog a year ago and began venturing back out into the world and taking risks, including trying painting again. It turns out I should not have given up on my artwork for over six years. My hands are still mine!”
Read more

Send an eCard

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MSAA Publishes New Booklet About MS Progression

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We here at MSAA are pleased to announce another new publication, Understanding Progression in MS. This valuable resource is designed to help people with MS and their loved ones better understand what is happening when progression in MS occurs and provides a number of treatment options – from the newest approved disease-modifying therapy to symptom management and wellness strategies.

Understanding Progression in MS includes:

  • An overview of the background information and details of the types of MS
  • An overview of how progression in MS is thought to develop and how it is evaluated
  • Current treatment options, noting specifically how treating inflammation differs from treating progression
  • Detailed information on several prominent symptoms and symptom management
  • Strategies for healthy living with progressive MS

Check out this latest publication and view or order your copy today!

 

Funding for Understanding Progression in MS was made possible by Sanofi Genzyme.

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Everyone Has a Unique Diagnosis Story

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Everyone living with MS has been diagnosed at different stages in their lives and each has a unique story and experience. We wanted to know more from our community members, so we asked a simple question: “At what age were you diagnosed with MS?” Not only did several hundred community members respond, but we heard bits and pieces of so many different diagnosis stories. Here’s what some of our community members told us.

Diagnosis at any age

Many of our members reported completely varying ages of diagnosis, including the following responses:

“At 24 I was diagnosed… now it’s 10 years and 4 kids later.”

“I was 29 years old, started with numbness & tingling in left foot… within a couple of days both legs were numb & tingling.  After a month & a bunch of tests I was told it was MS.”

“They told me in my 20’s it might be MS, I didn’t get a diagnosis until I was 50.”

“I was diagnosed at 43 in Jan 2014.”

“For me it was two years ago at the age of 55 years old.”

“I was diagnosed at the age of 60 in 2015.”

“I was 41, but had symptoms a few years prior.”

“The official diagnosis came when I was 21”

“I was diagnosed at 52 years old.”

There is not often a direct path to diagnosis

Many of our community members have found that confirming their MS diagnosis was not a simple nor a fast process. A large portion of our community members experienced symptoms for months, years, or even decades before getting an actual diagnosis.

“I was 23, but I had undiagnosed left sided weakness and heat intolerance since about 14”

“For me it was at the age of 29, but I started showing symptoms since the age of 15. I was hospitalized for weeks because of numbness on my left side from head to toe. They ran the gamut of tests they had back then and had no idea…”

“I was 38 but took 8 years to get the diagnosis!”

“I was diagnosed at 43 years old, but I had been experiencing symptoms for at least 15 years. It almost came as a relief, because at least now I knew.”

“Diagnosed at 54, with weird symptoms for over 2 decades.”

“Symptoms at 26, diagnosed at 52.”

“Probable diagnosis at 28 … definite at 33”

“My first symptoms at 45, final diagnosis at 48, after misdiagnosing and treating sinus area pain”

Incorrect diagnoses

Diagnosing MS can be a challenging process; early symptoms can often be suggestive of several other conditions. Not only did many of of our community members report having a long journey to diagnosis, but also, having stops along the way where they were misdiagnosed, or treated for something different.

“Diagnosed at 56….it took many years as it’s a disease that masks others…they thought it was Lupus for many years”

“I was 34 but misdiagnosed for 10 years”

“I was 33 years old, but was misdiagnose with Epstein-Barr for seven years”

“I was 29 but I had been misdiagnosed with hemiplegic migraines for year before”

 “At 31… Was told it was a brain tumor…”

“I was diagnosed at 19 but had symptoms my whole life doctors thought I had a stroke or diabetes or just bad migraines”

Regardless of age, the road to diagnosis may not be a direct or simple one. An MS diagnosis can come at any time in life, and can change everything.  Whether you’re diagnosed at 15, 55, or 95, we’re here for you! We hope you’ll continue to share your diagnosis experiences with the MultipleSclerosis.net community.

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