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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This issue of hard working people who save and do all the right things just to be devastated by a disease that they could not have prevented has long bothered me. But my question is, actually my concern is, that under the new health care law that one could still max out their insurance for some horrible disease and still be left going bankrupt and being denied critical medical care. I am not concerned about paying for birth control pills or for my routine health care bills. I can cut back on cable TV and eating out to pay for those things if need be. But if the health care law pays for the every day bills I could find money for but does not cover me in case of a catastrophic health problem, then this new health care law gives me no comfort.
Does anyone know the answer for sure?
...Thank you for the story Stephanie. I see at this time there are only 254 comments. This story is indeed just a `small’ story within the larger financial tragedies of health catastrophes. Yet any life crisis remains within the gravity of life-threatening. This is then the opportunity for those others who have commented to share their stories....They certainly do not have a MSN/Money `blog’ access.
There is hope for people with MS. for example: Stem Cell therapy for patients with relapsing-remitting multiple sclerosis disease who have failed Interferon A treatment. Refer to
Let me tell you a TRUE story. My spouse can have and does have serious asthma attacks once or twice a year that requires a emergency room visit. Next to us (behind a thin curtain) was a Hispanic couple using the emergency room as a doctor's visit to make sure her pregnancy was going smooth.
They brought in a interrupter to question them about health insurance. We can't help but hear the entire conversation. They claimed they had none. No ID's. Then, they brought another person in that told them that because they had no insurance, the bill would be taken care of. Everything for free!
A week later we received our bill $8523.00 for emergency services. Our insurance paid $6392.25 and we had to pay the $2130.75 out of our pocket. First, how does any hospital justify $8523 for an asthma treatment and the doctor? It's insane and highway robbery. This is after our $1223 a month premium! Took us five months to pay it off. Second, how does the Hispanic couple (assuming they are in the country legal) get all their emergency room visit for free? Month after month? It's because in that $8523.00 bill for us, WE helped pay for their bill. This is one of the biggest reasons medical bills are sky high, to help pay for the folks like the Hispanic couple. We are learning spanish, so next time we have to go to the hospital, we will say in spanish, "No hablan Ingles. No tienen identificacion. No tienes." "Ayudanos a cruzar la frontera ilegalmente y no tienen."
It's worth a try since we don't have much money on a fixed income!
But !.......... if you were a slack **** deadbeat like much of the country...... it would be free to you !
The responsible suffer and the irresponsible reap the benefits that you pay for..... just doesn't make sense!!!
Why do we provide free healthcare for president and former presidents and senators etc and they dont give a **** about us !!!!! It must stop we the people need it more than them . The USA most declare that healthcare provided to us the people is rank like a 3 world !!!! Where people live in poverty and die from malnutrision!!!!
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.
When my father passed away suddenly, and I got the hospital bill, the insurance had paid everything -except an $89.50 phone bill. $89.50 for the phone which he never used ! After waiting for the hospital to reconsider and say it was a mistake, I finally had to pay the bill.
The same hospital over a year ago, charged me ~$1000 for an ambulance ride. The cat-scan which I did not ask for either, was covered by insurance. I think the ambulance ride will be covered, but $1000 is far too steep for an ambulance ride.
Obama care is not going to cure that for your MS, or my heart condition. Increasing premiums will mean more cost of premium from your employer and probabably a higher deductible. If you go into the exchange you will have four choices of coverage. If you can't afford the best you will pay more out of pocket. I am sorry for your condition. But this article is to make people think Obama care is going to cure it. It will not. Premiums will increase dramatically in the first few years as those with pre-exisiting conditions get treatments.
The Bill was not about controlling health premium costs, it was about allowing access to coverage by more people. And we are about to add all the illegals that will qualify as new citizens and it will break the back of they whole system As it sits with current estimates the GAO estimates it will be either unaffordable to most people or collapse under it's own weight in 5 years.
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