1/28/2013 9:15 PM ET|
My disease is bankrupting my family
A debilitating lifelong illness has changed the shape of one family's financial future. Sadly, they're not alone.
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 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 my diagnosis has completely reshaped 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's 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 of medication 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, as 81% of MS patients do, and can't work, it would mean that I'd no longer be covered by health insurance after 18 months of COBRA. As a result, we're now 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, along with $3,600 per month in 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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A person who averages $50K a year will make $2 million in 40 years of work, if they average that $50K. Before taxes, of course.
You are all the serf class whose job is to work until you die. If you are unlucky and get sick, too bad for you. Glad too we have an immigration reform that was easily worked out over so many other issue.
You are a piece of meat to be exploited until unusable. The people who keep you distracted make millions for nothing but making you buy stuff that makes you sick.
Most of the drug companies offer payment assistance programs for many drugs including MS drugs. I have been on Avonex for 8 years, have had no relapses (I'm 55, diagnosed with RRMS at age 47), and I pay $10 a month with the copay assistance from Biogen Idec. My insurance (which, thanks to my employer paying 50%, costs me $360 @ month).
You have to maintain a positive attitude about MS. You are letting it beat you instead of beating it. No you will never be cured of it, but the fact I have had no flareups since I was first diagnosed, along with proper diet, excercise (I've lost 30 lbs since my dx), and rest helps immensely.
I will NOT let this beat me. I will not end up in a wheelchair, will not lose my sight, and not let this dominate my life. I work 40+ hours a week, am an active musician, and do as much with my two boys as time allows. I know people who have given up on life who have MS and have turned to drugs and alcohol to kill the feelings of despair. BE POSITIVE!!
My son has Juvenile Rheumatoid Arthritis. He receives infusions every three weeks at Children's Hospital. His total costs for his treatments are about $200,000.00 each year. A few years ago due to a change in our insurance, we could not afford to cover our new percentage of his infusions.
After hearing him cry in pain so many times, I swear I would have done anything to get him the infusions he needed. But we had another son, I had to think of him, too. So, I spent days on the phone until I finally found another agency, to help fill the gap in the insurance and get his infusions. Persevere!
This is a tragic story shared by countless familes across the U.S.
I'm not sure that universal health care is the answer, though. It just means the costs continue to rise and all of us get taxed more and more every year to cover it. It doesn't control the costs at all. And the only effective way to cover the cost is to deny coverage, which results in stories like these as well.
Not sure there IS an answer where everyone wins
My child has three chronic illnesses which rule our lives. His father and I (we are divorced) spend many hours figuring out how much we need to pay, who gets what bill and how we are going to cover everything. Generally, his gross cost of care is somewhere in the neighborhood of $100,000/year and most of that is for condition-specific drugs which will never have generics. Last year we had two hospital stays which put us in the $150,000 gross cost range. While we do pay a fraction of that due to health insurance, it is still a significant hit to my overall budget. These conditions only deteriorate over time and we are well aware that this will mean higher out of pocket costs every year and eventual bankruptcy filings for both of us. In the greatest, richest country in the world, this should never happen. Anyone who thinks that the Health Care industry does not need to be revamped and the providers/insurance and big pharma do not need to be regulated has not really dealt with the industry. I am grateful that they haven't had our sorrows, but big money needs to be silenced and the rest of us who are footing the bill should rise up and demand change. We never thought it would happen to us, and I pray to God it won't happen to you. But when it does, the rest of us will be here waiting and nodding our heads when you tell your sad story.
How can this happen !
Didn't the heavens open up and Obama come down and wave his hand to save us all from the evil,mean and greedy medical people and corpations......come on you know he did, so how can this still happen now that we all have FREE INSURANCE and don't need to wear safety gear anymore!
Run with knifes,eat lead,cook with the microwave door open, Obamacare has you covered!
Now if only we can Ban AARP and its evil support for the NRA and guns, yes they invested money in guns and their hands are covered with blood, shame on your AARP!!!
Health care of any type is bankrupting everyone who is unlucky enough to need it and there is quite a list of people to blame: lawyers, pharmacy co's, claims cheaters who bilk the health system, hopsitals, nursing homes, politicians who make decisions based on campaign contributions rather than common sense, the smoker of two packs a day, the drunkard, the drug addict, the person eating 2 cheese burgers before they get home for dinner, it goes on and on. 99% of the high cost/bankrupting issues related to long term or cronic healthcare are a direct result of someone's conscious, poor decision.
Clear up the above personal choice issues the unfortunate folks who, by no decision or action of their own, honestly do need treatment, get it without the catastrophic financial aspect making them wish they would have just died.
Try cancer ... my wife felt fine and all of a sudden it's stage 4 cancer and she passed within 5 months of finding out. Now the cost...2 each.. 500ml of chemo $11k , rad. treatments 10 in all $2800 each... a blood transfusion $1800 (and I give blood free 0neg) so why when you say the C word does everything seem to double in price. Total cost with no insurance $106,000.00
We had just quit our jobs and moved to our retirement home and started looking for new insurance.
So my point is health care is very broken the prices are very high I foresee only the Rich will be able to afford to get sick.
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