The Financial Burden of MS

For several of our community members, financial stress is one of the greatest challenges of living with MS. In addition to budgeting for out-of-pocket medical costs and everyday living expenses, it can be time-consuming (and sometimes stressful) to manage medical bills, insurance claims, and paperwork. Recently, we shared

about living on a fixed income, and our MS community members responded by sharing their own experiences with the financial burden of MS.

Managing Unexpected or Underappreciated Costs

“The COLA index does not reflect the expenses that the elderly or disabled must cope with.”

“Living on a fixed income, there is no way I can afford the the meds that are recommended.”

“MRIs copay with my insurance is $700. Takes me months to pay it off!”

“I need an MRI and hope this time I can afford it. Couldn’t get one last year because of the cost”

“The bills (even with insurance and a fulltime job) are tough to keep up with…. never ending”

As described by many of our community members, living with MS is costly, even for those with various forms of private insurance and/or public benefits. In a 2017 ‘Cost of Care’ survey, 77% of MS community members said that paying for care and treatment caused financial strain for their families, and over 50% of patients skipped or ‘stretched’ their medication to avoid the cost of refilling their prescriptions.1 For many community members, the out-of-pocket costs of medications, tests, and procedures far outweigh your family’s income, especially when Cost-Of-Living Adjustments (COLAs) do not match increases in premiums. While your private insurance and/or public benefits may cover some costs, according to many MS patients, these unexpected or unappreciated costs can be challenging for you and your family to manage.

While the financial strains of MS are all too real, many of our community members have offered their own cost-saving tips for dealing with MS. While some community members recommend asking your healthcare provider about less expensive or generic medications, other suggest calling your provider’s office to see if they have any drug samples for your medications. Other patients recommend researching financial assistance programs or looking for drug coupons (often available on pharmaceutical company websites), or even ‘shopping around’ for the lowest costs for prescription drugs, tests, and procedures.1</sup

Overcoming Stigma

“I overheard a coworker saying openly, ‘All sick people are costing healthy people too much’.”

“It’s an absolute disgrace to work all your life and pay into Social Security and then have ignorant fools saying we don’t deserve it like we’re getting billions of dollars a month…One diagnosis can change your whole world, but they don’t think it can happen to them.”

“We are sick and cannot work!”

For many patients, one of the most difficult financial burdens of MS comes in the form of shame, stigma, or judgement from other people. As many of our community members know, public benefits, such asSupplemental Security Income (SSI) and Social Security Disability Insurance (SSDI), often fall short of the considerable costs of treating and managing a chronic condition. However, possibly due to the politics of government assistance programs, as well as a general lack of knowledge about MS, many of our community members have experienced ignorant remarks about the costs of public assistance programs, and even comments about what sick and/or disabled people do and do not “deserve”.

While it can be frustrating, angering, and downright hurtful to hear these stigmatizing remarks, only you and your family truly understand your financial situation, the challenges of MS, and what it’s like to rely on public benefits. While it’s unfair for anyone to discredit your symptoms and experiences, you may prefer to block-out these comments in favor of listening to the people who actually understand what you’re going through, such as family, friends, and fellow MS community members.

“Retirement”

“I was diagnosed in 2001 and worked up until 2013… I worked hard all of my life and loved every job that I had”

“Every day I wish I had the capacity to work”

“MS took my career and the ability to support myself… I worked hard to get an education and my career”
“I had to take early retirement due to my MS”

“Within one year of diagnosis, I was forced to quit my job. I couldn’t afford my medication because my insurance copay for it was too high and I have had severe reactions to other medications.”

For many people with MS, “retirement” has a different meaning than it does for the general population. As described by some of our community members, your MS symptoms forced you to work less or even stop working earlier than you had wanted or planned, leading to frustration, as well as financial strain. Along with the loss of income to cover your out-of-pocket medical expenses, many patients share that they miss being able to go to work and accomplish something every day, leading to emotional challenges, as well as financial ones.

If you are no longer able to work due to MS, it is important to apply for SSDI as soon as possible, given the process can take some time (see below). If you’re experiencing feelings of frustration or isolation> due to no longer working, you can also reach out to the MS community for additional help and support.

Getting Disability Benefits

“I’ve been waiting 3 years for my disability… it’s been 2 years waiting for my court date”

“SS ROUTINELY denies ALL 1st time requests – you have to hire a lawyer.”

“A confirmed diagnosis of MS should be enough [to get SSDI]”

“It took me two years to get my SSI disability benefit… I had a lawyer, but it still takes a super long time…. I was in front of a judge just to argue to get my own money”

For some of our community members, one of the biggest financial challenges of MS has been applying for Social Security disability benefits. Typically, applying and being approved for SSDI or SSI requires gathering and organizing all of your medical records, as well as coordinating with your healthcare provider so that he/she can sign-off on your request. After applying for SSDI or SSI, several community members initially received a denial, requiring them to start an appeals process. If you need to appeal a SSDI/SSI denial, many of our community members recommend hiring a lawyer or advocate to guide you on the appeals process, which usually includes a court hearing to plead your case. While your lawyer or advocate will charge a fee, many do not send a bill until after your appeal is granted. According to some of our community members, you can also contact your senator or congressperson to (hopefully!) speed up the appeals process.
For people living with MS, financial burdens can come in all shapes and sizes. While some of you are dealing with unexpected or underappreciated costs, others are facing the need to stop working, or the ignorance of others who stigmatize public benefits. If you’re experiencing financial difficulties related to MS, we encourage you to contact the MS community for help and support, and share your story today.

Works Cited

  1. Editorial Team. “Show Me (more than) the Money! Results from the Cost of Care Survey.” MultipleSclerosis.net, Health Union, 30 Jan. 2017, multiplesclerosis.net/infographic/cost-of-care-survey-results/. Accessed 29 Mar. 2018.
Share

Insurance Resources

Dealing with insurance of any kind can be a stressful experience for anyone if you aren’t familiar with the language and jargon used on the forms.  Health insurance is no different – particularly when you are trying to make sure that the health insurance you have covers all of your health needs, including any regular therapies, durable medical equipment, specialist visits, and regular tests.

Navigating the world of health insurance can be daunting, but our Client Services team here at MSAA has a couple of resources that can help get you started on resolving your questions and issues:

  • Patient Advocate Foundation – The PAF provides case management for patients who are dealing with insurance, employment, or other legal issues related to their medical condition.
  • State Insurance Departments – This link will take you to a map of the United States with a link to each individual state’s insurance web page that can offer more information about the insurance laws and the insurance marketplaces available in your home state.
  • Life Happens – This non-profit provides information and resources to find life insurance, disability, and long-term care insurance policies/plans, and they can help you find a local agent to assist you with those plans.

You can also visit the main website for Medicare and Medicaid to find additional information about these two government-funded health insurance options.

This is just a short list of resources that you have at your disposal to help you work your way through your insurance questions.  For more information about your particular question or issue, please feel free to reach out to our Client Services Specialists at (800) 532-7667, ext. 154 or at MSquestions@mymsaa.org.

Share

Dealing with Insurance Denials

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/

Share

Insurance Open Enrollment is Fast Approaching

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/

Share

Insurance and Planning with Multiple Sclerosis

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.

Share

Dental and Vision Insurance

This month as we focus on health insurance, it is also important to discuss two of the often underinsured areas of healthcare, dental and vision services. While we understand the importance of dental hygiene and multiple sclerosis, many individuals still don’t receive the much needed care.

Dental insurance plans can be purchased through the health insurance marketplace as a stand-alone insurance during open enrollment OR if you are planning to make changes to your health insurance plan for the 2016 year, a plan can be selected that includes dental care. Unfortunately, if vision coverage isn’t part of your health insurance plan, it cannot be purchased through the marketplace. To learn about available stand-alone vision plans, contact your state’s Department of Insurance, or a local agent or broker.

Check out the following tips on how to find dental care for the underinsured:

  • Check for a local federally qualified health clinic which offers dental services. To search for a health clinic, use the HRSA website.
  • Look into local dental schools. Most of these teaching facilities have clinics that allow dental students to gain experience treating patients while providing care at a reduced cost. Experienced, licensed dentists closely supervise the students
  • Dental Lifelines Network offers information about free dental services in the area for those that qualify. You can look up information about your state’s program on the program’s website: http://dentallifeline.org/
  • Dial 2-1-1 and connect with your local United Way. You may be directed to free or reduced cost dental services

Check out the following tips on how to find vision care and eyeglass services for the underinsured:

  • VISION USA, coordinated by the Optometry Cares – The AOA Foundation, provides free eye exams to uninsured, low-income workers and their families. For more information about VISION USA, call 1-800-766-4466.
  • Lions Clubs International provides financial assistance to individuals for eye care through its local clubs. You can find a local Lions Club by using the “club locator” feature on the organization’s website.
  • New Eyes provides free eyeglasses to more than 8 million people in the U.S. and around the world. For more information about New Eyes, call 1-973-376-4903 or visit the New Eyes website.
  • EyeCare America, a public service program of the Foundation of the American Academy of Ophthalmology, provides free eye exams for qualifying seniors. To see if you qualify, please visit the EyeCare America website.
Share

Battling the Health Insurance Appeal

Insurance companies are like a business. They are out to make money and with that being said, they are looking out for their assets. If insurance companies approved every claim that came through, they would burn through their resources very quickly. This is why insurance companies work the way that they do. By providing a set list of covered benefits, they control the amount of claims that come through and can control the amount of money spent on those benefits.

With that being said, it does not mean that an individual cannot receive coverage for a needed device or treatment. It is just that the insurance company wants to know that this device or treatment is really needed AND is going to be helpful.

For example, the Bioness or WalkAide device used for the treatment of foot drop. For many, if they were to contact their insurance provider and inquire as to whether the device was covered under their plan, they would be told ‘no’. This can be very discouraging and can spark some anger in those who struggle with foot drop. But if we look at ‘why’ the insurance companies deny this device initially, it can make sense.

The Bioness or WalkAide devices have not been FDA approved for the treatment of foot drop in MS, meaning that there have not been clinical trials to prove that this device is clinically effective for those with MS. Unfortunately, without the FDA approval insurance companies may have the upper-hand. They are trying to protect their assets and don’t want to provide an expensive device and have that device not be effective.

So what can you do?

Insurance companies require what is called a ‘burden of proof’, meaning that you must provide enough proof and evidence to the insurance company that the device or treatment is helpful to you in your situation. Using the example of the Bioness or WalkAide, by locating a physical therapist that works with this device, or one that can assist with receiving a trial, you can help to build your case against the insurance company. Physical therapy reports of the devices effectiveness can be used in the appeal process to provide the burden of proof needed for the case.

While insurance appeals can be a challenge and possibly delay treatment or assistance from a medical device; decisions can be overturned and won. By understanding the system and how and why an insurance company requires this information, you give yourself the advantage in the appeals process.

 Have you won an insurance appeal? What steps did you take to ensure your success?

Share

Health Insurance Marketplace: Special Enrollment Period

As individuals prepare their taxes for the 2014 year, many who did not purchase or enroll in a qualified health plan may be facing the penalty fee. According to the HealthCare.gov website, if you did not have health insurance coverage in 2014, you will be responsible for the higher of these two amounts:

1% of your yearly household income. (Only the amount of income above the tax filing threshold, about $10,000 for an individual, is used to calculate the penalty.)
$95 per person for the year ($47.50 per child under 18). The maximum penalty per family using this method is $285.

On February 15th the Marketplace closed for enrollment in 2015 plans, leaving those who did not enroll to face a penalty again when filing taxes next year. The Health Insurance Marketplace is providing individuals and families who owe the fee when they file their 2014 taxes with one last chance to get covered for 2015 to avoid a future penalty for the 2015 tax year.

While the fee for the 2014 year cannot be avoided, this special enrollment period offers individuals another chance to possibly avoid a future fee.

For those interested in enrolling, visit The Health Insurance Marketplace website at https://www.healthcare.gov/screener/. This special enrollment period is only available through April 30th.

References:
https://www.healthcare.gov/fees-exemptions/fee-for-not-being-covered/

Share

Insurance Enrollment and the MS Community

While the 2014 year slowly comes to an end and individuals start to make their end of year plans, there are still two important dates to keep in mind in regards to open enrollment for health insurance. For those who are uninsured, or who possibly want to make some changes to a pre-existing Medicare plan, open enrollment allows individuals to make changes without penalty.

Medicare open enrollment ends Sunday, December 7th. Up until this date, changes can be made allowing an individual to switch from Original Medicare to a Medicare Advantage Plan, or vice versa. A switch from one Medicare Advantage Plan to another Medicare Advantage Plan or to a plan that offers different drug coverage can be made as well. This is especially important to the MS community as medications can often change. If the doctor prescribes a medication that is not covered under a drug formulary, other drug coverage options can be explored that may be more suited to your prescription needs. To explore options, contact Medicare directly at (800) 633-4227 or visit www.medicare.gov.

For more complex issues with Medicare, the Medicare Rights Center offers a helpline to answer your questions about insurance choices as well as Medicare rights and protections. You can reach the Medicare Rights Center at 1-800-333-4114 or visit www.medicarerights.org.

The Open Enrollment Period for individuals eligible to enroll in the Marketplace for a Qualified Health Plan for coverage starting in 2015 is now through February 15, 2015. Individuals can enroll in a plan in the Marketplace by visiting www.healthcare.gov, or by calling (800) 318-2596. These plans are available to those who are uninsured, losing insurance, or who would like to make a change to their existing plan. If you purchased a plan in the previous Open Enrollment period and were not happy with that plan, now is the time to review other options and make a switch if available.

For more information regarding insurance, MSAA’s My Health Insurance Guide is aimed at assisting the MS community with understanding the many details surrounding today’s health insurance options.

Share

If you need health insurance…

Don’t forget that Open Enrollment for purchasing health insurance through the new Health Insurance Marketplace ends this year on March 31st. 

If you need health insurance_blog

If you need health insurance and have not already visited the website www.healthcare.gov or called an Insurance Navigator at (800) 318-2596, do it now! Give yourself time to make an informed decision about the best options for you. Five million Americans have already enrolled.

Remember, once the 2014 Open Enrollment period closes, you will not be able to purchase insurance until 2015 Open Enrollment begins, unless you have a qualifying life event (such as the loss of a job or the birth of a new baby). 

Need more information? You can also review MSAA’s website for important information about how the ACA impacts you.

Learn more button

Share