How My Disease Is Bankrupting My Family

Via LearnVest 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.

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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 $3,500 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.

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.

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