Not just a numbers game; there are real people in the health care fight
By Alison McQuade on
July 12, 2012
On Monday, Republican Congressman David Dreier said, during a House Rules Committee debate, that he thinks someone who is diagnosed with a brain tumor should not have access to health care. He said:
And I believe my state of California has a structure in place to deal with pre-existing conditions. It’s a pooling process, which I think is one worthy of consideration, because while I don’t that think someone who is diagnosed with a massive tumor should the next day be able to have millions and millions and millions of dollars in health care provided, I do believe that there can be a structure to deal with the issue of pre-existing conditions.
It’s both an abhorrent and heartless proposition. As Matt Miller opined for the Washington Post yesterday and Jamil Smith analyzed on the Melissa Harris-Perry blog, Dreier is among an astounding number of Republican lawmakers who are more than willing to dismiss the health needs of millions of Americans to make a political point.
What Republicans, like Dreier, forget when they’re spewing off these extremist and thoughtless remarks is that they’re playing with real people’s lives. I decided to chat with my friend, Steffanie, who knows all too well what living in David Dreier’s world could mean. (All emphasis is mine)
EMILY’s List: So can you tell me a little bit about your diagnosis?
Steffanie: Sure. I found out something was not right the week before Thanksgiving in 2010. One evening after working my desk job, my legs were tingling. I attributed it to sitting most of the day. I ignored it, mostly because my husband was on a business trip and I didn't want to deal with it. The next day, it didn't stop and spread to my arms and I got cold. So very cold.
I went to work and by the end of the day it hadn't stopped. Joel, my husband, was still in Chicago. I didn't have a PCP at the time so I got the information of a friend's doctor so I could call first thing in the morning. At 9am on the dot, I called. As soon as I told the receptionist what was going on, she said the word stroke, and I lost it.
So, she told me not to come in and to go straight to the ER. I had just switched to Joel's insurance because we had gotten married that March. I didn't know how much it would cost to call 911 so I drove myself to the ER. I have been given many lectures by every doctor I've met about how I endangered myself and those around me by not calling for help. At the time, I didn't know what my insurance covered and how expensive an ambulance would be - now I know to call.
They did a full run up at the ER and determined that I really needed a neurologist. They saw something, but that they wanted me to see someone special. I was released. Fast forward a few weeks: I had a load of tests. I had many, many, many tests.
The diagnosis is that the lower portion of my brain is 3 times the size it should be. It is called Arnold Chiari Malformation. Because it is large, it compacts the spinal stem causing Syringomyelia which are basically cysts in the spine.
There is no "cure" for the malformation, only treatment. They don't know a lot about it right now.
I've done my own research, become my own advocate since learning about Chiari and learned that I have displayed symptoms since I was in grade school, we just didn't know to look for it.
EMILY’s List: I bet that's the case with a lot of people who have it.
Steffanie: It is. It isn't exactly something that doctors are trained to look for either since it is so rare. Actually, our vet knows a lot about it because it is common in Cavalier King Charles Spaniels (also why we got Bertie).
EMILY’s List: Ha! I didn’t know that.
Steffanie: Surgery is a treatment option for quality of life purposes. Decompressing the brain helps relieve some of the symptoms for SOME people.
EMILY’s List: So there's really no silver bullet...
Steffanie: None at all. Basically after meeting with a surgeon in February, one month after diagnosis, we had surgery lined up for March 21st. I'm on forums talking to people who have had 5+ brain surgeries trying to correct and make room for their large brains. But we are so lucky because we are on Joel's PPO. So so so so lucky.
EMILY’s List: How much does this type of surgery cost?
Steffanie: All totaled, pre-insurance, if you add everything up for the surgery: MRIs, scans, every post-op visit, (not including the lawyer for the wills, etc) the hospital has billed our insurance between $30-40K.
EMILY’s List: That’s overwhelming.
Steffanie: Now, for the clinics who do JUST Chiari surgeries who don't take any form of insurance: $100K to walk in the door out of pocket. That doesn't include my monthly medicine, the MRIs that I have on a routine visit; those are $5K each, or the follow up appointments I have with my local doctor
EMILY's List: And you said some people have to have multiple surgeries. That's insane. So do you know if this is genetic or just random bad luck?
Steffanie: They aren't sure, but from the new research I've read, it seems like my case is most likely genetic. Chiari can be caused if you are in a car accident, or have a traumatic brain injury. But it seems like those cases are more rare or people with it just aren't on my forums.
EMILY’s List: So you read the article yesterday where GOP Rep. David Dreier from CA said that insurance companies should be able to discriminate against people with brain tumors? And I know your Chiari isn't a tumor exactly, but it's the same idea – inoperable (Ed. note: The brain malformation is inoperable. In Steffanie’s surgery, she had part of her skull and neck removed to make room), not preventable, high-risk, long-term, right?
Steffanie: Yes, exactly. There isn't anything I could have done to prevent this. I sure did not ask for it. My idea of a fun day is not Chiari symptoms. My brain changed my life.
EMILY’s List: What would be the repercussions for someone, like you, if Rep. Dreier got his way?
Steffanie: Oh, dear. Bankruptcy. I would hate to think about. We are so lucky we aren't in more debt because of this already.
EMILY’s List: Right. You and Joel are relatively young and still getting on your feet in terms of careers, being married, etc.
Steffanie: We've only been married 2 years, we rent, and we are still trying to pay off our student loans and trying to afford living in D.C. Our parents understand that we struggle and when I had to stop working for 3 months to recover they had to pay our rent. I can't imagine asking them to help pay a $100K hospital bill.
EMILY’s List: And you're lucky you were in a position where your parents could help you out.\
Steffanie: Yes, that is part of why we are very, very lucky. The worst part is, I know they wouldn't hesitate, but my dad is retired, my mom owns her own home-based business. I want them to actually retire, not support their grown, married child.
I am doing what I am supposed to be doing. I've been dealt a hand of cards that kind of sucks, and I'm playing them the best that I can. [I want to say to politicians] ‘Please don't make it any worse for me or my parents.'
How can someone be pro-life but say I can't get the health care I need? I want to live and work and enjoy my time.
EMILY’s List: And I'm sure the Obamacare provision of not discriminating against people with pre-existing conditions means a lot to you and Joel, since this is something you'll have to deal with your whole life.
Steffanie: YES! It does. On top of having a uterus. Thank goodness.
I don't know what we would do without it.
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