This story is by Stephanie Casey, as told to Libby Kane.
Four 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.
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.
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 $3,500 per month medication.
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.
To prepare for this possibility, we took our daughter off my health insurance and put her on my husband’s. It’s inferior to mine, but it will disassociate her from the disease, so she’s less likely to be rejected from health insurance based on her family history of MS.
Today, my daughter understands only that mommy has to give herself a shot every day, and I have to wear a special vest in the heat (it has cooling packets in it, to keep me from overheating and my symptoms from flaring). I’ve planned to talk to her about why her mother has a “special doctor for her brain” when she’s old enough to understand that she might inherit my need for said doctor. There’s a 9 to 10% chance that she’ll develop MS, compared to the average person’s .001% chance.
We’ve taken other preemptive measures, as well. For example, all of our retirement savings are now in my husband’s name, so they can’t be seized upon declaring bankruptcy. I also maintain a handful of high-limit credit cards with no balance, in case I ever have to pay for my medication in cash when I no longer have insurance to cover the cost.
And if and when our house exceeds $75,000 in equity and no longer qualifies for the California Homestead Exemption, a law that says it can’t be seized in bankruptcy as an asset), it will go into a trust in my husband’s name, and will eventually be given to our daughter. (For the record, we’ve been told by our accountant and by The National MS Society that these measures are legal.)
We plan not to have any more children, not only because I don’t want my daughter to have to help raise a sibling if I’m incapacitated, but because we’ll be best able to care for her financially as an only child.
We don’t want to file for bankruptcy, but it’s our safety net — our embarrassing, scary, horrible safety net.
It isn’t uncommon for married couples in our situation to get divorced and then continue living together in order to file a single income and be eligible for lower taxes and more benefits. My husband and I are prepared to do this.
Our Last Resort
I feel lucky that I was diagnosed so quickly. I feel lucky that those $120 syringes are slowing the progression of my disease.
But I’m also terrified.
Being diagnosed with MS feels like being hit by a train. I always point out that women are disproportionately susceptible to life-changing autoimmune diseases, and the best thing that you can do is to be prepared. Was I prepared? Of course not.
Some people who don’t understand the all-consuming, endless cost of a disease like MS think that we’re being flippant by even considering declaring bankruptcy. They truly don’t understand that the costs for my medication, my annual MRI, my rehabilitation therapy and the occasional hospitalization (I’ve been admitted twice so far for suspected strokes) are nearly double my mortgage.
We don’t want to file for bankruptcy, but it’s our safety net-our embarrassing, scary, horrible safety net. We want to pay our own way and continue to be the self-reliant family that we were in the past. It feels like the biggest failure in the world, after putting myself through college and doing everything right, to think that we might not be able to take care of ourselves.
Above all else, I’m fighting to preserve our home, my daughter’s college savings and our assets. We can’t risk losing everything to an illness that’s never going away.
This piece originally appeared on LearnVest, the leading personal finance site for women. Need help managing your money? Our free Money Center will help you create a budget. Our free bootcamps will help you take control of your money, cut your costs or get out of debt. And you might even be interested in one of our premium financial plans–managed by LearnVest Certified Financial Planners.
Image: Fotos Gov/BA, via Flickr
MORE FROM LEARNVEST