So someone asks me, _"What’s the hardest part of living with multiple sclerosis, Lisa?" _
I would have to answer INSURANCE!!
"Really? Not the blindness, not the numbness or persistent tingling, not even the weakness or lack of coordination, or the overwhelming fatigue?"
Yes, it’s the constant, overwhelming, bring you to your knees, lack of financial security or protection from catastrophic costs, otherwise known as my insurance coverage.
I am a freelance musician, meaning I am self-employed, the sole proprietor of my own business, and have all of the fiscal responsibilities of an employer and employee.
I am available to perform in various organizations around the Washington DC area when a personnel contractor calls. I choose whether to take the job or pass on it. However, if one passes on a job, it is very likely that the personnel contractor will move your name further down his roster of potential players for next time.
I am an independent contractor, responsible for all necessary taxes. As such, I have much experience with filing Federal tax forms - 1040, Schedule C, Schedule SE (Medicare, FICA, etc), and more.
But unlike an employer with employees, I can not deduct the cost of health insurance from income used to calculate Self-Employment tax (approximately 15% of gross income). And unlike a business with employees, I am not eligible to participate in group health insurance plans. Some states allow a ‘group of one’ when it comes to insurance plans, but Virginia is not one of those states.
So where does that leave me? Participating on the individual health insurance market in purchasing the very best plan available. That plan, which I researched and purchased years before I received the diagnosis of MS, comes by way of a non-profit BCBS company right here in the Nation’s Capitol.
I like the 90% coverage I have on medical services, the $25 copay for PCP and specialist office visits, even the $100 copay for each emergency room visit which doesn’t result in hospitalization.
What plagues me most is the $1500 cap (limit) on pharmacy drug benefits. Just how far do you think $1500 goes in paying for one of the disease-modifying drugs in treatment of MS? The answer is about three (3) weeks or about 6.25% of the year - and that’s just for one (1) medication.
This leaves me personally responsible for greater than 93.75% of drug costs at the outset and 100% responsible for additional pharmacy requirements throughout the year.
Patients in my situation are often referred to the appropriate Prescription Assistance Program (PAP) which, for the medication I use, is administered by the National Organization for Rare Disorders (NORD). There are all kinds of rules established to determine eligibility (which is another topic entirely) and it’s not as easy as it sounds to receive assistance.
So the answer to the original question remains - INSURANCE!!!
What’s the hardest part of living with multiple sclerosis in your life?
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.