In the early days after diagnosis, MS triggers are often a mystery. However, many find that the more time they have lived with MS, the more they know exactly what makes their symptoms worse.
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
“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.
“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.
- 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.