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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I agree that health care costs are out of control.
I was in the hospital for 2 nights in ICU because of congestive heart failure. I was laid off about 2 years ago and lost my health insurance.
Luckily my issue wasn't serious but I received a bill for about $35,000.
For ICU it was just shy of $8,000 a night.
I'm diabetic so they gave me insulin injections 3 times a day and charged $200 per injection. For $200 I could buy enough insulin to last me at least 4 months.
An aspirin was $8.00. My other medications they charged more for 1 pill than I pay for a 90 day supply. The ER doctor billed me $1500; I saw him for 15 minutes. I could go on but I think I made my point.
I have found that the morons like the first commenter who bash Obama's health care plan are usually republicans with a nice health care plan who have never had to worry about paying a whopping hospital bill. Even when I was was working and was offered insurance, the cost to the company per 1 employee was $650 a month, and it wasn't a very good plan.
If you wanted your spouse and children covered multiply by $650 a person.
I don't expect a free ride and I'm willing to pay a reasonable amount but this is a license to steel!
If I had insurance the hospital would have been paid about $4,000. or less.
We are the only industrialized nation in the world where you can lose everything you own because of an illness or accident.
We need to somehow cap what providers can charge and make heath insurance affordable and available to everyone.
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.
This story shoud be read by president.
This problem is more important then immigration.
President have to think how american can survive first,
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.
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.
It's really disturbing the number of comments I see making jokes about this, bashing the President and criticizing people who didn't buy disability insurance. What is wrong with you people? These folks in the article did everything right, and they still lost everything.
And not all doctors are rich with lavish lifestyles. Most of them work incredibly hard after years of schooling and residency with eighty plus hour workweeks. But yes, the costs of health care are most definitely out of control.
We need change in health care, no doubt. The problem is that every time someone comes up with a good idea there are cries of socialism, and no one wants to pay for it. Yet they can't come up with anything better.
And why should employers pay for health care? Why not? Do you really want employees who are ill because they can't pay for the cost of health care on their own? Isn't the idea of healthy employees with fewer outside concerns weighing on their minds worth something? Isn't the thought of less turnover saving you costs in the long run worth something? And there are other benefits as well.
We are all one serious illness away from bankruptcy....There needs to be some competition in the health insurance industry and in the medical field...they have us over a barrel.
So, I'm a doctor... And I was diagnosed with MS during residency. (During which time I was making $58k for >80hrs/wk of work... so nothing spectacular.) I was admitted to my own hospital, and the nurses would ask "where's the patient?" And I'd wave and say "its me!"
Lying in that hospital bed, the most important thing anyone told me, is "Never let yourself become a victim. Never let this disease be an excuse for what you can and cannot do." This disease is all about attitude... and I can see you are depressed and being a bit fatalistic right now, but the statistics are changing. These new medicines that have come out in the last 10 years are changing the battlefield.
But this disease was also my first exposure to the exorbitant costs of healthcare. Forget Avanox. that was a year from hell... but cheap compared to Tysabri. My hospital (which insures all its resident physicians) was paying itself $17,000 a month to administer me a medication it bought from the pharmaciutical company for less than $3,000. So $14,000 to have a nurse place an IV and have me sit in a chair for an hour? That's $250,000 a year.... but it put me in remission, enough so I can still be a doctor... So I'm grateful, but still shocked.
I hope you are a long way from being disabled... MS is a reminder to live every day to the fullest. And to NOT stress too much about life. It's completely out of your control. If the worst does happen... if my mind deteriorates so much that I can no longer function, then a bottle of tylenol is a particulary cheap and effective way to go... But I have hope that it will never come to that... And until then I am very grateful that God gave me a disease that forces me to see the big picture more often, and reminds me to never take a second for granted, and to try as be as happy as possible living in the moment... one can neither predict or change the future, so why worry about it.
If the medical bills get outrageous, get an on-paper divorce and give him (and thus your kids) everything, and then get on medicaid or medicare.... And try Gilenya (new oral MS med) if possible. It's pretty awesome, it works, and it's oral. They also have patient assistance to make sure it never costs you more than $120/month.
Hugs to you and your family! You'll be okay.
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