Some of the ABCs

Posted on January 12, 2022 by Angel Blair

Living with MS is a unique and different experience for each person it affects. No two people will have exactly the same symptoms or disease course, but many still find commonalities in their experiences and feelings when it comes to the condition. MS tries to bring a lot of baggage with it, but many find ways to cope and manage the disease in their own way that works for them. This is done with the help and support of healthcare professionals, family, friends, and others in the MS community. As we focus on some of the ABCs of MS this month according to each person’s view of it, I’ve highlighted some factors I’ve seen relate to MS below.

A: Some of the A’s I’ve seen correlate to MS include Acceptance, Adapting, and Adjusting. Hearing a diagnosis of MS brings a period of trying to accept the diagnosis and coming to terms with it. Acceptance is not an easy feat and can take time. It can come in waves and show up again at later points in the disease course too. So, it’s a step that individuals may find themselves faced with multiple times. Finding ways to help accept it can look different and change too and is unique to each person. Adapting and adjusting to some of the changes MS can create is something people find themselves doing often as well. Making changes and modifying things can help maintain balance and expectations. If routines/schedules/tasks need adjusting to help fit your needs better, take time to make these changes so they work for you.

B: B’s associated with MS can include Building and Backup. Building relates to the education and knowledge piece of MS. Building upon information about the disease and continuously learning new facts and resources is an important piece to the process. Continue to build upon your strengths and goals and finding what you enjoy too. Backup refers to the support you put behind you when dealing with MS. Whether it be your own skillsets and strengths, support from others within your circle, education and resources, and health information. It never hurts to have a little backup when needed.

C: The C’s related to MS incorporate Community and Care. Within the MS space there is a great sense of community that many individuals rely and depend on for support. It is vast and has many layers that consist of healthcare teams, MS organizations, peer and familial support, counseling help, and other pieces individuals connect with throughout their MS journey. Community support is a great tool in helping to manage the disease and finding assistance. Care is a crucial piece to the puzzle as well. Finding healthcare, personal, wellness, and emotional care aid is significant in helping cope with the disease and all its factors.

It’s hard to imagine that one disease can have so many differing views of it and be experienced in such vastly different ways, but MS can and does. But no matter how unique each person’s course of it is, there’s still so much to connect and relate to about it. No one is alone in this.

Common Healthcare Issues

Posted on August 10, 2018 by Angel Blair

Working on the MSAA helpline we often hear different types of client experiences when it comes to working with one’s healthcare team. Some rave about their doctors and specialists and cannot say enough good things about the care they receive. Others don’t have quite the same positive reviews in their circumstances. Continue reading →

The Financial Burden of MS

Posted on March 30, 2018 by MultipleSclerosis.net

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

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.

Medicare Open Enrollment is Coming!

Posted on October 11, 2017 by Angel Blair

On October 15^th Medicare’s open enrollment period begins and lasts until December 7^th. 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:

Switch from Original Medicare to a Medicare Advantage Plan and vice versa.
Switch from one Medicare Advantage Plan to another Medicare Advantage Plan or from one Part D prescription plan to another.
Join a Medicare Prescription Drug Plan (Part D Plan) if you haven’t done so.
Drop your Medicare Part D prescription drug coverage.

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 1^st to February 14^th.

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

What To Do If You’re Uninsured

Posted on August 17, 2015 by Angel Blair

We know that life can be very unpredictable at times and no matter how much we try to anticipate obstacles and changes, there may be times that we find ourselves in unfamiliar territory, not knowing how to navigate the shift. With these changes sometimes come circumstances where one might find themselves without health insurance coverage for much needed medical care. It’s important to know where to go to try and find help with continued medical care needs.

If you’ve experienced some type of life change, like the loss of a job, moving to a new location, or getting married or having children and you find yourself uninsured, you may qualify to enroll in a Special Enrollment Period through the Health Insurance Marketplace to see if you can obtain healthcare coverage outside of the open enrollment deadline.

Local hospital systems sometimes offer financial assistance programs called ‘charity care’ to help those who are uninsured with medical costs accrued through the hospital. You can contact the hospital’s financial billing office for information on this assistance to see if you qualify to receive care from doctors and services provided through the hospital.

You can also try to access primary/general medical care follow up through federally qualified health centers in your area that work with individuals who are uninsured. These centers offer different services that include primary healthcare, dental care, women’s health services and routine immunizations, and physical exams. For those without insurance, a sliding fee scale payment option (based on your income and ability to pay for services) is sometimes available through the centers.

For possible help with medication costs, you can contact the manufacturer of the medication directly for information on any prescription cost assistance programs they provide. The MS Disease Modifying Therapies also have patient assistance programs that help uninsured clients by providing information and guidance for cost assistance they may qualify for with the treatment. By working with these different resources, uninsured individuals can try to continue maintaining their medical care and follow up.

Insurance Enrollment and the MS Community

Posted on December 3, 2014 by Samantha Schech

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.

The Empowered Patient: Your Greatest Resource Lies Within

Posted on August 29, 2014 by MSAA

By: Jeri Burtchell

I remember feeling like I’d stepped through the looking glass that day in the hospital. My world became distorted and unreal as the words “you have multiple sclerosis” echoed in my brain. I couldn’t make sense of it; this couldn’t be happening. Suddenly my life as I knew it was over and I could either live in the past, or look to a new future.

It may have been over 15 years ago, but I haven’t forgotten that day. Anyone living with MS was once “newly diagnosed.” We’ve all been there.

So this month, in keeping with MSAA’s theme of finding resources, I’d like to introduce the newly diagnosed to what will become their greatest resource of all. It’s the mental approach we take toward living our best life despite MS. I’m talking about being an empowered patient.

The term “empowered patient” has no clear-cut definition, however it encompasses an overall set of characteristics that sets one apart from the average patient. Empowered patients take an active role in making health care decisions, learn all they can about their condition, compile resources, take notes, and strive to improve their own quality of life. There is no set way to accomplish this; each empowered patient discovers their own path.

For eight years after my diagnosis, I was anything but empowered. I felt helpless, overwhelmed, and despondent. My medication wasn’t working for me even though my doctor insisted it was. I had no idea I could get another opinion, and I trusted him when he said I needn’t try any other medicines.

Then one day my neurologist had a stroke. I was suddenly fighting my MS battle alone. That’s when my journey toward empowerment began. My first step was finding another doctor.

I’d never been very sick before MS, so doctor shopping was uncomfortable for me. I had my primary care doctor pick my new neurologist instead. (My path to empowerment began with baby steps.) It turned out the doctor he chose was the lead investigator for a clinical trial studying a pill for MS.

When I met with him we discussed the drug trial, weighing the risks and benefits. He also told me of all the other available options. Again I had to choose. I was terrified of making the wrong decision, and all of the medicines seemed so scary. But I was more afraid of not being on one of the drugs since my MS was so aggressive. I took home the paperwork to read up on the clinical trial. Three days later I took a huge leap. I decided to join.

Up until then I had been miserable, relapsing 3-4 times a year. Really big relapses that had me in a wheelchair, on a walker, or using two canes. The whole time I suffered, I never thought things could ever change. I thought I was destined to be miserable forever.

But the trial changed my life. I happened to get the real study drug and it worked so well for me, it would be another six years before I had a new relapse.

The positive outcome of my choices reinforced the importance of playing a more active role in my health care.

I learned all I could about my disease and took notes about what others found effective for treating the symptoms of MS. I questioned everything and sought to find the answers. As they say, knowledge is power.

But being an empowered patient isn’t just about making treatment decisions and getting second opinions, it’s also about owning your lifestyle choices, too. I took a long hard look at the things I could change. I gave up smoking and junk food and began exercising more. I saw real improvements. My goal is not just to live life, but to feel as good as I can at the same time.

But if giving your whole life a makeover seems like an impossible task, just take baby steps. Find one thing you can do that positively impacts your health and focus on it. If you need help, reach out for support.

Becoming an empowered patient doesn’t happen overnight. It’s a process that evolves over time.

So if you’re newly diagnosed and feeling overwhelmed, don’t despair. Know that there is an ebb and flow to relapsing MS and if you feel bad now, there are better times ahead. Focus on learning all you can and actively participate in your treatment decisions. If you don’t like your doctor, find another one. Don’t wait for them to have a stroke before you start thinking for yourself.

You’ll find that being your own advocate might be your greatest resource of all.

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

Adding Up MS: Hey, What Does That Number Mean?

Posted on August 1, 2014 by MSAA

Did you know that estimates indicate that as many as 2.5 million individuals across the world may be living with MS currently? MS is generally referenced as a “rare” disease, but that number doesn’t seem small to me!

Where you are living in the world will determine a number of factors, including what diagnostic tools are available to accurately evaluate and diagnose a person with MS. After all, those figures might be harder to estimate in countries that do not have trained neurologists, MRI equipment, and other supportive medical testing. If people are not diagnosed or seeking medical care, then they are unlikely to be “counted” or projected into estimates.

Another major challenge is that many countries – including the United States – do not have an official MS Registry, which is a legislated or mandatory accounting of each person diagnosed with a particular condition within a particular country (or other geographic area such as a state). Without a registry, scientists and epidemiologists must rely on other factors to try and “guestimate” how many people in any particular area may be diagnosed with MS. These types of disease registries do exist in the United States for other conditions, such as ALS (Lou Gehrig’s Disease).

Countries such as Denmark do maintain an MS registry. Since the 1950’s Denmark has collected specific information on anyone diagnosed with MS. This type of registry has provided Danish researchers and scientists of other countries valuable information for clinical research and prospective studies. Hopefully someday the United States legislature may agree that a national MS registry could bring many benefits to individuals living with MS.

So, when you see that 2.5 million number, think of all the people who don’t see a doctor because they can’t access one or cannot afford medical care. Think of all the people who are diagnosed with something else because their physicians don’t have appropriate diagnostic equipment. Yes, researchers have tried to extrapolate an “accurate” number, but who is being left out?

When I hear that figure, I think, what does that number really mean, and how does that number impact the MS community? Does the lack of a registry leave researchers without critical information which could be collected to better understand the MS process and who is diagnosed with MS? Is less funding spent on MS research, including causes, treatment options, and individual quality of life and well-being because MS is perceived as “rare”? These are questions that cannot be answered because the true number of people living with MS is unknown, but it is still important to pose the questions.

For more information regarding projected figures of individuals living with MS around the world see the Atlas of MS 2013.

If you need health insurance…

Posted on March 19, 2014 by MSAA

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 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.

Self-Advocacy for People with Multiple Sclerosis

Posted on March 3, 2014 by Angel Blair

Different thoughts may come to mind when you hear the word ‘advocacy.’ Some may not be familiar with the term or others may have a very vivid description of what the word means to them. Advocacy can be defined as active support, pleading or arguing in favor of something or for some type of cause. Individuals advocate for themselves in different ways, sometimes without the knowledge that they’re engaging in self-advocacy. When you visit your doctor and ask questions, this is a form of self-advocacy. You are supporting your healthcare by requesting more information to make the best informed decisions you can regarding your care. Some individuals have others assist them with this task at times; family members, friends and caregivers have been known to advocate for care when involved in the healthcare process. Sometimes it’s helpful to have another voice or set of ears advocating for your health needs when interacting with your medical team, and there can be different forms of this advocacy presented.

Here are some ways the MSAA can help you remain an advocate in your healthcare:

My MS Manager™: a mobile-phone application to track disease activity, store medical information, generate reports, and assist individuals with their treatment plan
MSAA’s S.E.A.R.C.H.™ Program: tools to help individuals with learning about the approved long-term treatments for MS, along with questions to discuss with the patient’s medical team
My MS Resource Locator: an MS-specific, online database offering targeted information and unique support services, including detailed guides

What are some ways you advocate for your care?

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