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.

Comments

brain tumors

Submitted by Anonymous (not verified) on 07/13/2012 05:26 am

After 4 yrs of fighting the VA that my husband was physically ill not just depression, they diagnosed a sub-frontal meningioma brain tumor that was the size of a large man's fist. It affected his personality, memory and motivation. He is also type 2 diabetic and was not keeping his sugars controlled. He almost died at a VA hospital, even tho the doctor admitted she knew he was going downhill. They had to give him steroids for a week before transferring him to Dallas to a private university hospital for the 8 hr surgery. Now 11 yrs later, he is on Depakote to help mellow his mood out - even tho he never had seizures. He did change from the man I married in 1973. He is a 100% disabled vet. We still use the VA system for his medical care and love the one we go to in Shreveport. His neurologist talks to my husband and if I am there it is because I am worried about something and he will ask me afterwards. Due to the tumor, we almost divorced before our 25th anniversary. Now we just celebrated our 39th. He has some frontal lobe issues and lost 2 yrs before the tumors were removed. He volunteers helping alzheimers patients at an adult day care not knowing the staff consider him a volunteer/client. With his type 2 diabetes, arthritis (anklosying spondilities), stage 4 renal failure and frontal lobe issues, we would be broke if not for the VA. It is a managed care health group but some of his health issues can be related back to his time in service in Vietnam. I hope we can keep Obama in office. I gringe is Romney gets in. I hope we can elect a democrat to take Kay Bailey Hutchison's place instead of another Republican. It was the Republicans - Reagan and all - who "borrowed" against the Social Security in the late 70's. Held the paychecks of military and federal employees hostage for almost 2 weeks - but not their checks of course. They never repaid it and January of this year we finally got a pay raise/cost of living raise for the first time in 3 yrs even tho our B Medicare went up every year.

Steffanie

Submitted by sharon rousseau-risdon (not verified) on 07/12/2012 08:27 pm

Just want to tell Miss Steffanie that I'm praying for her & her family. Her calm strength in the interview amazed me, & she has my admiration & prayers for the best long & healthy life & tons of love, sharon

Brain Tumor

Submitted by Shellie Miranda (not verified) on 07/12/2012 06:39 pm

In mid March of this year, I had what I thought was a stroke but after an MRI, my doctor told me I had a large brain tumor and had to have it removed immediately. Because my county accepted an Affordable Care Act grant this year, everything has been paid for from tests to surgery to rehab. I was unable to work more than half time for the last five years (because of the tumor as it turns out) and took early Social Security Retirement a year ago so I have had no health insurance for several years. I have one more year until I qualify for Medicare so Obamacare has literally been a life saver for me. I had a mammogram last week and got a shingles vaccine two weeks ago, important medical care I could not have afforded on my own.

"numbers game" article

Submitted by Barbara Shine (not verified) on 07/12/2012 04:15 pm

Mr. Dreier's comments about pre-exisitng conditions are cruel and unconscionable. My heart goes out to Steffanie, along with my hopes that she is able to continue receivng the care she needs. I am among the many who have suffered in the past when insruance companies turn down applications or accept them only with unreasonable limits (exorbitant premiums, unreasonable deductibles, and crippling ceilings on benefits). My husband and I had to use all of our savings when I had either poor coverage or no insurance at all. Now I benefit from the Medicare program and a supplemental policy, so that most of my medical bills are fully paid. Even so, the monthly premiums for those insurance plans and my out-of-pocket costs for prescripton medicines consume fully 50 percent of my Social Security income each month. Necessary over-the-counter medicines take another 5 to 10 percent. I cringe in sympathy for the families of both children and adults with congenital or chronic, long-standing diseases. When health care costs consume all of a family's assets, what chance do they have for the pursuit of happiness? When there is no way to pay for health care, what chance does a chronically ill person have for life and liberty? These are constitutional rights that can be denied by state and federal government's failure to adequatly promote the welfare of all the people.