How My Disease Is Bankrupting My Family

the cost of msFour years ago–seven days after my 30th birthday, and three months before my only daughter turned 2–I got a cold.

Along with the cold, the left side of my face went numb. When I still couldn’t feel my cheek a few weeks later, my doctor sent me to the emergency room. I laughed at the time, thinking of those news stories about people who take up seats in the E.R. because their doctors don’t want to see them.

But once I was given a CAT scan that showed suspicious but inconclusive results, and then admitted to the hospital overnight, things were less funny. Only an hour after getting an MRI, my neurologist came in and told me that, without a doubt, I had multiple sclerosis, an autoimmune disease that affects the brain and spinal cord, causing such symptoms as loss of balance and hearing loss.

When the doctor left the room, my husband turned to me and said, “Don’t let this moment define the rest of your life.” So far, I haven’t. But what I didn’t realize was how much my diagnosis would completely reshape my financial life.

I got a $2,500 bill for that hospital visit–and that was just the beginning.

Why My Illness Is So Expensive

Once I researched the medication that my doctor wanted me to take, I realized that it would cost $2,800 a month. Every MS drug is around this price–and there are no generics available now or in the foreseeable future.

The author and her 6-year-old daughter.

At the time, my health insurance through work covered most of the cost. I was responsible for $500 of it, while living in a small apartment, and trying to save for a down payment on a house.

To make ends meet, my husband and I changed our budget and our plans immediately: Instead of the two-story house we’d been eyeing, we purchased a one-story home near my in-laws that could be altered in the future to accommodate my eventual need for a walker or a wheelchair. It would also make it easier for my husband’s parents to help care for my now 6-year-old daughter.

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The thing you need to understand about MS is that there is no cure. There’s no getting better–there is only slowing down the progression of the disease. Statistically, my life expectancy is about average, but the last years of my life will look different from other people as my disease progresses. I’m lucky that I now have full mobility, with only the occasional muscle twinge–and I keep it that way with a daily self-injection.

As the years go by, the price goes up. Since I was diagnosed, the prescription for the injection has risen from $2,800 to $3,600 a month. If I didn’t have health insurance, which covers all but $250 a month, it would cost me $43,000 a year.

These numbers sound insane–but what would you pay to be able to see? Or walk? Or swallow? It’s all relative. I look at my syringe every day, hoping that the $120 dose is working.

How Our Financial Health Has Changed–for the Worse

Until that fateful MRI, my husband and I were in great financial shape. We maxed out our IRAs, we were saving for a house, we amassed a sizable emergency fund and we had no debt.

But if I lose my vision, like 81% of MS patients do, and can’t work–this would mean that I’d no longer be covered by health insurance after 18 months of COBRA–we’re prepared to file for bankruptcy. If I don’t have insurance, and I lose my income, our family would be functioning on my husband’s salary alone to cover a $2,200 a month mortgage–and my $3,600 per month medication.

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We’d be bankrupt within a few months of running up credit card bills to pay for the drugs, so it would be better for me to file individually, get down to no income and qualify for disability insurance and patient assistance programs from the drug manufacturers.

My situation isn’t exactly unique–depending on the studies you reference, anywhere between 17% and 62% of bankruptcy declarations are largely caused by overwhelming medical bills.

  • PhilChance

    Thank you so much for the story.  I think there are many people who have these problems but are afraid to tell their stories.  I wonder if the Affordable Health Care Act will help you?  It is sad that you might have to divorce to get help but I’ve heard of others doing the same. 

    It also brings up another good point and that is having children.  I think you are being very responsible in your decision to not have more children.  I wonder if we will ever get to a point where we can have a test pre conception and see what we are likely to develop.  I think many people would plan their families differently.

  • Ffsteveff

    Please know that in this current economic uncertainty, mainy hardworking people will be declaring bankruptcy for many reasons.  I hope that your MS will progress slowly, and you will have many wonderful years with your family.

  • Redd

    For what it’s worth, I’ve had MS for 21 years (and probably 4-8 years before that) and am still entirely intact.  Although I have a “flare” (relapse/exacerbation) every couple of years, I always have full recovery.  I have been able (most fortunately) to continue to work part-time while receiving partial disability payments. 

    Since I’ve not had any clearcut loss of function for ten years, I now fall into the category known as “benign MS”  with an excellent prognosis — less than a 5% chance of ending up in a wheelchair, etc.

    In addition, the chance of anybody with MS going blind is in the single digits (I’m not sure sure where you got the 80% number but it’s erroneous), and since I haven’t had any eye symptoms since diagnosis, my chances for anything going bad with my eyes are even lower.

    So just a different point of view:  there’s MS, and then there’s MS.  Let’s hope yours is like mine!

  • ROZA

    I read when I read your post; I have MS since 13 years and due to a firing at my work(cause of my desease) I had to claim banckrupcy. I am finally arriving to finish paying for my debt(in france you have to pay depending on your situation) I am lucky I don’t have to pay for my medecine cause I KNOW HOW PRICEY IT IS; Good luck to you and keep hope

    • roza lee

      I meant I cried    sorry

  • Guest

    There is a very big assumption that people who file bankruptcy and use assistance are “mooching” or feel “entitled” by those who don’t know or care to know what is really going on. Those people should be ashamed for judging and feel lucky that they have their health. NO ONE can prepare for the financial ruin of a major illness and the health insurance nightmares that come with it.

    Your story brought tears to my eyes. I watched my parents go from comfortable to dire straights and file bankruptcy and apply for assistance when my mother fell ill. Multiple hospitalizations with long stays added up and they couldn’t afford to pay for it, despite my dad’s decent salary at the time. She couldn’t work until she recovered and my dad had to take over all living expenses plus all of the new ones. She was eventually given the correct diagnosis and treated, and resumed a somewhat normal life afterward, but like you, has to take expensive medication for the rest of her life.

    I too can relate. My family had savings, plans, budgets, etc. We were able to save enough and adjust our expenses so that I could stay at home to raise our children. After my 2nd child was born, an extremely rare but extremely serious (fatal to 1/3 of mothers who experience it) complication occurred. There was a hospitalization that included ICU, lots of imaging tests, labs, and medications. A genetic mutation was discovered through that testing that put me at risk for it, but it’s not something that ever would have been tested if this didn’t happen. After being released from the hospital, there were frequent doctor visits with more testing and medications. It adds up SO quickly and can ruin you in no time! It’s horrible! We had an independent insurance plan that wouldn’t renew us because of this and couldn’t get anyone else to cover us unless we paid for sub-par coverage at a higher cost per month than our mortgage, so we ended up un-insured. I went back to work less than a year later because we’d used up all of our savings and the medical bills kept coming in. We were fortunate that I was able to quickly find a job that offered group coverage after a few months of employment.

    Even though I fully recovered, the risk of it happening again will never go away. Our dreams of starting our own business have been changed. One of us will always have to be an employee of a big company that offers insurance, at least until the new laws go into effect, becuase insurance companies look at my history and see the dollar signs. That means they either deny us altogether or quote us extremely high, unaffordable rates. I feel like we’re being discriminated, because like race or gender, you can’t control what your genetics will do to your health.

  • Moonpiewoman

    The most difficult thing I have found about this condition, as well as others; is that one has to ACTUALLY have the needed ENERGY to fight the good fight! Providers; basically all providers, treat us as if we are cogs in THEIR wheel. I’m not judging them, I’m beyond that point. The stories I could tell… The lower half of my face is almost completely numb, and I can’t smile! Or I would! If we don’t find a way to make things happen (I live alone) it doesn’t get done. I can’t afford to pay a private, medical case manager. I live on SSDI. I was able to work part time, until this fall… I still volunteer at a thrift store. I can stay on my feet, by holding on to the shopping carts, so I put out merchandise. It cracks me up, when people ask me if I am “afraid I will become too dependent on my cane! The amount that I receive each month, disqualifies me from the “extra help”, from the state, OR the drug companies. I am about 150.00 “over”..I finally got a copy of the book (at a thrift store), “How your Doctor thinks.” It is an excellent read’ although it confirmed my worst fears. I also recommend the M.S. newsletter, at about.com. The admin. there finally got diagnosed with M.S. after many years.  It has really helped me; to interact with members there in the forums. I hold an advanced degree and worked in my field for over 25 years. Thanks for listening! The woman who’s article we are all responding to really is doing EVERYTHING she should be doing, in my book! I don’t know her, but I am proud of her!

  • Sailor_solaris66

    Thank you for sharing. I’ve been in a somewhat scary place as well. A year ago I was diagnosed with Type 1 diabetes (even though I worked out and had a relatively heathly diet). The first thing I thought was “how much is this going to cost me?” The same week, my employers decided they couldn’t afford to cover our insurance premiums and we would have to foot some of the bill.  I’ve managed it well and try to find various ways to cut my healthcare costs like getting gift cards for my pharmacy.

  • Marawash

    Thank you for sharing your story with us. When disease hits a family, their financial health suffers as well. I am glad that you and your husband are being proactive and taking the necessary steps to provide a great future for your daughter.

  • Francesca Petrizzo

    Thank you very much for sharing your storyì I don’t think anyone who has an ounce of sense and has read this would ever believe you are flippant for considering the possibility of divorce for financial reasons or bankruptcy. For what it’s worth, I believe that by the very action of planning carefully for the worst you are showing that you are a responsible, hard-working, and above all brave person. I hope your disease stays the slowest and least obtrusive it possibly can. Good luck.

  • Ryan M. Kealy

    I hate hearing these stories. My wife passed away from Hodgkin’s this past year. Even with “good” health insurance, I still owe 40-ish thousand dollars to various health agencies. Even though I have a good income, by the time I pay all of her medical bills each month, there really isn’t much left.

    The moral of the story is this:
    Don’t get sick in America. Even with health insurance, you’re pretty much fucked.