Since your site claims that you want me to share my ObamaCare story, and yet every time I try to submit, I get this lovely communique:
(Which, let's be honest, is an appropriate metaphor for the whole fucking election and the interaction between three branches of government and the proletariat for the next 4 years).
I'm going to post my letter to you here so that everyone can see it. Ready? Sit your ass down. You and your friends work for the fucking People of the United States of America and you are going to fucking listen to what I have to say.
My parents had me when my mother was 40 and my father was in
his mid-fifties, so by the time I had gotten to high school my father was already
retired, on Social Security and Medicare, and my mother moved into that bracket
as I graduated from college. Both of my
parents worked hard jobs, boot-strapping themselves up as immigrants because no
one would hire them because they were Chinese and didn't have sponsorships, or a
social network, or American teaching certifications or degrees (they were
teachers from Taiwan), and they didn't have time or funds to go to school while
raising 3 kids on minimum wage jobs in America, the land of opportunity. Regardless, they worked hard. They paid their taxes. They were conservative, Christian,
Republicans who raised their daughter to be an educated, honest, hard working
contributor to society who loved Jesus.
We lived on a busy inner city street between a wood working storefront
and a shipping facility in a gang-ridden, dilapidated neighborhood in
Chicago littered with antique shops that were going under, and the public park was a pile of rusty poles on top of gravel. All I ever wanted to do since I
was a child, was to be good and do good.
I was lucky enough that my parents provided for me well enough that
being good wasn’t difficult, but doing good requires excess energy that is
afforded to people who aren’t scraping by just to survive, and my life was about survival regardless of whether I knew it (the last 15 years of my life) or not (the first 14 years of my life).
My father was ill for a long time. After retiring from his job at a restaurant as a food prep, he suffered a massive heart attack that required a quadruple bypass, was diagnosed with chronic kidney failure due to uncontrolled diabetes that required dialysis 3 times a week, and hepatitis C. For seven years, the sole bread winner
in my family was my mother, who, in her sixties, bounced from job to job, and
finally worked as a homemaker for $8.25 an hour.
Yeah. We were well
into the economic freefall of the 2000’s.
Then, starting the summer of my senior year in college, in the span of 8 months, my father fell, hit his head, went into a coma, died 3 months
later, and my mother was diagnosed with stage 4 breast cancer requiring a total mastectomy, 8 rounds of chemotherapy, and included one very terrifying case of anaphylaxis and an equally terrifying brush with pneumonia. I graduated
from undergrad with a BA in Music (admittedly, I didn't really grasp the
consequences of majoring in the arts during a recession) into the open arms of The Great
Recession with hundreds of thousands of dollars of medical debt left over from
my father’s illness and no time to build up a clientele for private piano lessons. Lest we forget, music programs were being axed left and right during the recession, so I wasn't about to find employment at a school as a music teacher. I did what most of my cohort did at the time. I fled back into the familiar arena of academia, until the aforementioned breast cancer blighted mother caused me to reassess my life choices.
I dropped out of grad school and came home to take care of
my newly widowed, newly ill mother and I had to get a job--any job! Fast. I only had $800 left in my bank account, which I gambled on a CNA certification. I became a CNA and worked part time (without benefits, as benefits are only offered to full time employees) while
going to school full time to become a nurse because that was the only way I
could think of to make a good, honest living as quickly as possible. It took me almost 3 years to complete all of the nursing prerequisites with a 4.0 GPA. I finished the Licensed Practical Nursing program in 8 months, moved vertically in my company into nursing, and continued working part time (still without benefits) and going to school to earn my Registered Nursing degree. I started feeling more tired than usual, but by this time I had been working and going to school and accompanying my mother to her myriad of hospital follow ups for breast cancer for 5 years and being a little tired wasn't a radical side effect of being chronically overworked. But during finals week I was so tired that I finally decided I needed to see the doctor. I took my last exam, went down to the government free clinic at JH Stroger Hospital and began a 3 month journey of hospitalizations (with fevers and sweats and shakes and nausea and fatigue so intense I felt like breathing was too laborious and so many blood draws a doctor once looked at my arms and accused me of being a junkie) and tests and screens and biopsies.
I received my diploma in the mail at the same time I received news that I had a rare form of lymphoma that (on average) struck 100 people in the entire United States every year.
How special am I!
I received my diploma in the mail at the same time I received news that I had a rare form of lymphoma that (on average) struck 100 people in the entire United States every year.
How special am I!
I was 28 years old, had been unable to perform my job for 3 months (the job that paid $23 an hour with NO BENEFITS
because part timers did not receive benefits) and had lymphoma. I resigned from my position.
Let's take a small detour from my story. If this had occurred under "Better Way" I would have a preexisting condition for which I would be penalized for not having continuous coverage--or really for not having coverage at all. BECAUSE WHO THE HELL EXPECTS TO GET A RARE AND DEADLY CANCER AT 28 WITH NO FAMILY HISTORY OF LYMPHOMA AND NO HISTORY OF DRINKING OR SMOKING AND A LONG HISTORY OF EATING WELL AND BEING ATHLETIC?! Luckily for me, I had ObamaCare, which, let's be honest, you and your ilk use the nickname "ObamaCare" as a pejorative. It's the Affordable Care Act. Stop trying to piss in my coffee and convince me it's sugar.
Okay, back to my story. So I had a rare lymphoma. The social workers that worked with JH Stroger hospital in Chicago (the setting of a great book "Cooked" by Carol Karels which describes to a T, the hospital into which I was born and the same hospital system where I received life saving cancer treatment) expedited my paperwork so that I could begin treatment the next business day.
Let's take a small detour from my story. If this had occurred under "Better Way" I would have a preexisting condition for which I would be penalized for not having continuous coverage--or really for not having coverage at all. BECAUSE WHO THE HELL EXPECTS TO GET A RARE AND DEADLY CANCER AT 28 WITH NO FAMILY HISTORY OF LYMPHOMA AND NO HISTORY OF DRINKING OR SMOKING AND A LONG HISTORY OF EATING WELL AND BEING ATHLETIC?! Luckily for me, I had ObamaCare, which, let's be honest, you and your ilk use the nickname "ObamaCare" as a pejorative. It's the Affordable Care Act. Stop trying to piss in my coffee and convince me it's sugar.
Okay, back to my story. So I had a rare lymphoma. The social workers that worked with JH Stroger hospital in Chicago (the setting of a great book "Cooked" by Carol Karels which describes to a T, the hospital into which I was born and the same hospital system where I received life saving cancer treatment) expedited my paperwork so that I could begin treatment the next business day.
Chemotherapy causes a woman’s eggs to be dumped from her
ovaries making her 1) go into menopause early, and 2) become infertile. I was 28 years old and I was faced with the
fact that I didn’t have the money to get some fancy surgery to excise an ovary,
and I didn’t have time to undergo IVF because the amount of weeks it would take
to harvest eggs would give the cancer the upper hand in an already very
advanced time table. The ACA allowed me
to get hormone treatments, which cost a total of over $10,000 for $10. And before you balk at how much water taxpayers had to carry for me, remember, most medications can be produced for a
fraction of their cost by companies who send lobbyist to line your pockets, which is an entirely different discussion. I digress.
The point is: For a girl whose whole life savings was a grand total of $4000, and was earning $23 an hour--or rather earning $0 an hour since I had resigned due to my inability to perform my duties-- paying $10 instead of $10,000 to
retain her fertility after being delivered the worst news of her life was a
miracle.
Let’s expound on the cost of my cancer treatment. Do you know how much one infusion of CHOP
costs? About $20,000. I had 6 infusions.
There are people who receive chemotherapy with minimal side
effects. I was not so lucky. I threw up so much blood and fluids in the
first 16 hours after my first infusion that I nearly died from hypovolemia,
which is when the blood volume in your body is so low that not enough blood can
travel to your brain, and your brain suffocates. The ACA made it possible for me to be
hospitalized for 3 days after each infusion so I could get IV infusions of
fluids so I wouldn’t die of the side effects of chemotherapy. Do you know how much one night in the
emergency room, and then 3 to 5 days times 6 sessions as an inpatient
costs? Hundreds of thousands of dollars. It is the cost of multiple single family
homes in Chicago.
The medication that allowed me to keep from throwing up at
home?
Meclizine, Zofran, metoclopramide, Dronabinol, Ativan,
dexamethasone… They threw the sink at me
trying to help me keep my insides inside.
I don’t even know the costs of all the CT scans, PET scans,
the baseline tests to see how my heart would do before they injected me with
medications that would destroy the cardiac muscle but would maybe save my life,
the two surgeries I had to just diagnose the cancer, the surgery to put in a
port-a-cath, the myriad of blood tests and cultures and—I’m sure I’m forgetting
something. Thousands of dollars.
I am cancer free for one year. I started working full time as a nurse 4
months after my last chemo treatment. I
am back in school pursuing my BSN, and my goal is to become a Nurse
Practitioner specializing in Women's Health and Community Outreach to help
women in neighborhoods like the one I grew up in to boot strap their way up the
same way I did. Except this time, with
me on their team, maybe they'll have the benefit of actually having boots. In a 50 year career (should I be so lucky to live so long), how many billions of
dollars do you think I’ll save the country by keeping entire neighborhoods
healthy? When I become a professor and
train classes of nurses to go forth and serve the public—how much do you think
I’ll have infused into our economy?
I am alive today because of the ACA. My patients have an excellent nurse because the ACA existed and I got chemotherapy for an aggressive lymphoma no one could have predicted I would get.
But you know what? I know, and you know, that you KNOW the ACA saves people's lives. You're asking us to tell you our stories as if those of us who use the ACA haven't been screaming our testimonials and our fears of losing access to healthcare. And you know that you don't really give a flying fuck whether or not we're protesting, or calling. In fact, your friend Paul Ryan actively blocks letters from protestors and hangs signs saying "Only scheduled appointments will be admitted." How much you want to bet those of us in favor of the ACA will never get an appointment? This inquiry into the mind of the public is one big pony trotting facade as evident by your "Access Denied" page.
I am alive today because of the ACA. My patients have an excellent nurse because the ACA existed and I got chemotherapy for an aggressive lymphoma no one could have predicted I would get.
But you know what? I know, and you know, that you KNOW the ACA saves people's lives. You're asking us to tell you our stories as if those of us who use the ACA haven't been screaming our testimonials and our fears of losing access to healthcare. And you know that you don't really give a flying fuck whether or not we're protesting, or calling. In fact, your friend Paul Ryan actively blocks letters from protestors and hangs signs saying "Only scheduled appointments will be admitted." How much you want to bet those of us in favor of the ACA will never get an appointment? This inquiry into the mind of the public is one big pony trotting facade as evident by your "Access Denied" page.
But let’s get back to the ACA and how it saves lives. There's more information you need to know about my cancer. I may die in 4 years
without the ACA. This is why:
There is an 80% chance it will return in the first 5 years of remission, and my lymphoma is so rare there is no protocol for treating it because there aren't enough subjects to test a protocol on, which means the next time I could very likely die without seeing my 35th birthday because there's no actual treatment for it and doctors are trying to hit a moving target with a pea shooter in the dark.
There is an 80% chance it will return in the first 5 years of remission, and my lymphoma is so rare there is no protocol for treating it because there aren't enough subjects to test a protocol on, which means the next time I could very likely die without seeing my 35th birthday because there's no actual treatment for it and doctors are trying to hit a moving target with a pea shooter in the dark.
But my cancer will be back.
I am terrified for that day, not just because cancer and dying is scary,
but because I know with the the ACA being dismantled I won’t have that safety
net for my next battle with lymphoma.
And frankly, don’t pander that shit about Republicans having
an alternative to the ACA and ask me to swallow and smile. I have read the proposals to replace the ACA
and the least shitty option is "Better Way." Not the best option. The. Least. Shitty. Option.
This is why:
Yes, under Better Way insurance companies are required to provide for people with preexisting conditions, but they can price gouge you on your monthly bill and your deductible if you leave your company’s insurance (which will eventually happen should I get sick again because I can’t COBRA forever and fighting cancer can take a really long time) and have a lapse before signing up for private health insurance. What happens if you get laid off and are finding it hard to get hired? What if, for some reason you find your work situation untenable and you have to leave? What if an emergency situation forces you to leave? What if you find it too overwhelming to go to school and work full time so you drop to part time but you can't afford to pay your bills and tuition and deductible and copays so you don't pay for insurance and hope for the best? What happens when you run out of savings and can’t afford to buy private health insurance at sky high prices? What if—for whatever reason because life happens, like 28 year old triathletes suddenly getting cancer out of the blue—I something really crazy happens and I end up in a coma for months on end and have a lapse in coverage between my employer insurance to my own policy? Or what if, like I said earlier, this had happened to me exactly as it had except this time around I had Better Way instead of ObamaCare?
I would be, without a doubt, dead. This happens to Americans all the time. I know. I work in healthcare, and this was the case before ObamaCare in a lot of red states. It's too bad I can't write "lack of access to affordable healthcare" in the blank space for "cause of death." Insurance companies don't have a billing code for that!
Look. In all seriousness, when you’re unemployed because of a crippling acute disease process or a chronic disease an $800, or $2000 deductible may as well be a 1 billion deductible. For someone who earned $75 dollars a day after taxes as a CNA, the choice is, either die from being buried in debt and having to declare bankruptcy or buy a Saturday night special and blowing your brains out because at least that will save your family the money of trying to save your life.
This is why:
Yes, under Better Way insurance companies are required to provide for people with preexisting conditions, but they can price gouge you on your monthly bill and your deductible if you leave your company’s insurance (which will eventually happen should I get sick again because I can’t COBRA forever and fighting cancer can take a really long time) and have a lapse before signing up for private health insurance. What happens if you get laid off and are finding it hard to get hired? What if, for some reason you find your work situation untenable and you have to leave? What if an emergency situation forces you to leave? What if you find it too overwhelming to go to school and work full time so you drop to part time but you can't afford to pay your bills and tuition and deductible and copays so you don't pay for insurance and hope for the best? What happens when you run out of savings and can’t afford to buy private health insurance at sky high prices? What if—for whatever reason because life happens, like 28 year old triathletes suddenly getting cancer out of the blue—I something really crazy happens and I end up in a coma for months on end and have a lapse in coverage between my employer insurance to my own policy? Or what if, like I said earlier, this had happened to me exactly as it had except this time around I had Better Way instead of ObamaCare?
I would be, without a doubt, dead. This happens to Americans all the time. I know. I work in healthcare, and this was the case before ObamaCare in a lot of red states. It's too bad I can't write "lack of access to affordable healthcare" in the blank space for "cause of death." Insurance companies don't have a billing code for that!
Look. In all seriousness, when you’re unemployed because of a crippling acute disease process or a chronic disease an $800, or $2000 deductible may as well be a 1 billion deductible. For someone who earned $75 dollars a day after taxes as a CNA, the choice is, either die from being buried in debt and having to declare bankruptcy or buy a Saturday night special and blowing your brains out because at least that will save your family the money of trying to save your life.
Yes. It is that
desperate. Yes, I had those
thoughts. Yes, I still do have those
thoughts even though I have a job and insurance now because I had to quit my
job the first time I was diagnosed with cancer.
I was in and out of the hospital so often, and I was so
immunocompromised I couldn’t possibly function in a health care setting where I
would be exposed to patients with communicable infectious diseases.
When the cancer comes back (remember 80% probability it will
be back within 5 years), I won’t have a job because I won't be able to hold a job while I'm puking my guts out and unable to walk 200 yards without passing out. (I tried walking to the end of the block for some exercise during the period between my third and fourth round of chemotherapy and I was so weak I couldn't make it back home. I just sat on the sidewalk and tried to keep breathing. Can you imagine what it was like to be a triathlete and suddenly not be able to walk 200 yards?) I will run out of funds to pay for COBRA before my treatment is done and
should I slip up and make a single mistake in transferring to a Better Way, I
will be price gouged to the point where suicide will seem a better option than
treatment. Suicide. That is the “Better Way.” That is what a “block grant” program will
do. Millions of people, people like the
younger me—smart, hard working, training to go into jobs as civil servants but
who haven’t quite made it yet—will be tossed out into the cold. That is what scrapping the ACA will do to
millions of hard working, God-fearing, tax-paying, honest American citizens who
just want to live decently, humanely, with dignity, and make our country a
better place.
And people who rely on the ACA are productive people who want to build and contribute to society. I went into nursing because a full time nursing job provides me with enough money to support my family and to pay off my crippling college debt, to pay my taxes (and I LOVE PAYING MY TAXES if they actually go to providing public service for legitimate reasons and not because rich assholes like the Walton’s don't pay their employees a livable wage or building a fucking wall between the U.S. and Mexico--DON'T GET ME STARTED ON THIS OH MY GOD WHAT A DUMPSTER FIRE), and to have insurance that allows me to get the screening that I need to see if my lymphoma has returned so I can stop using medicaid.
(Yes! Believe or not, people don't like the stigma of being so poor they have to rely on Medicaid. You think people have self esteem when they're sitting on a corner begging for handouts? Are you delusional? You think people who are so sick they can't work are kicking back in hammocks sipping mojitos? Are you kidding me?
Ahem. I digress.)
In the year since I had my last chemotherapy infusion, I have paid off my grad school loans. I’m almost done paying off my undergrad loans. I am actively paying tuition out of pocket for further schooling. I can support my family (not enough for savings, but then again, I may die from cancer so why bother with a 401K). I am more than happy to pay my taxes. I have insurance, and I have a PCP so I don’t unnecessarily clog up our ERs and cost my insurance company extra money for illnesses that are easily preventable with annual flu vaccinations and checkups. I spend money at restaurants and have bought myself new clothes and new electronics—something I haven’t done in a decade—thereby stimulating our economy. I am a productive member of society. I have achieved my goals.
Don't get me wrong. I am well aware the ACA is not perfect. But it is head and shoulders above all of the alternatives so far.
And people who rely on the ACA are productive people who want to build and contribute to society. I went into nursing because a full time nursing job provides me with enough money to support my family and to pay off my crippling college debt, to pay my taxes (and I LOVE PAYING MY TAXES if they actually go to providing public service for legitimate reasons and not because rich assholes like the Walton’s don't pay their employees a livable wage or building a fucking wall between the U.S. and Mexico--DON'T GET ME STARTED ON THIS OH MY GOD WHAT A DUMPSTER FIRE), and to have insurance that allows me to get the screening that I need to see if my lymphoma has returned so I can stop using medicaid.
(Yes! Believe or not, people don't like the stigma of being so poor they have to rely on Medicaid. You think people have self esteem when they're sitting on a corner begging for handouts? Are you delusional? You think people who are so sick they can't work are kicking back in hammocks sipping mojitos? Are you kidding me?
Ahem. I digress.)
In the year since I had my last chemotherapy infusion, I have paid off my grad school loans. I’m almost done paying off my undergrad loans. I am actively paying tuition out of pocket for further schooling. I can support my family (not enough for savings, but then again, I may die from cancer so why bother with a 401K). I am more than happy to pay my taxes. I have insurance, and I have a PCP so I don’t unnecessarily clog up our ERs and cost my insurance company extra money for illnesses that are easily preventable with annual flu vaccinations and checkups. I spend money at restaurants and have bought myself new clothes and new electronics—something I haven’t done in a decade—thereby stimulating our economy. I am a productive member of society. I have achieved my goals.
Don't get me wrong. I am well aware the ACA is not perfect. But it is head and shoulders above all of the alternatives so far.
Do not gut the ACA.
Build on it. If we destroyed every building that wasn't perfect, we'd still be living out, exposed to the elements. You don't sit naked in middle of a thunderstorm because your only option at the time is a house has a leaky roof! You get inside the freaking house and put a pot under the leak, and then you try to fix the goddamn leak. And you definitely don't tear down the roof with one leak and put up only half a roof because the leaky roof was not working well. What kind of ass-backwards logic is that?
You and your cohort are wealthy, white, privileged men, with educations and the luxury of time most of us couldn’t dream of having access to. You have employees capable of generating hundred of thousands of hours of legislation, and the best plan you can come up with as a party is “Better Way?” You're mad that Obama riffed off MassHealth and Mitt didn't get to shine. Get over it. What is wrong with you? Shame on you for forcing me to spend time explaining something that should be so obvious to you when I should be studying to help sick people. Shame on you for trying to cut the legs out from under millions of Americans. Shame on you for calling yourself a senator—a representative of the people. You know better. Do better!
You and your cohort are wealthy, white, privileged men, with educations and the luxury of time most of us couldn’t dream of having access to. You have employees capable of generating hundred of thousands of hours of legislation, and the best plan you can come up with as a party is “Better Way?” You're mad that Obama riffed off MassHealth and Mitt didn't get to shine. Get over it. What is wrong with you? Shame on you for forcing me to spend time explaining something that should be so obvious to you when I should be studying to help sick people. Shame on you for trying to cut the legs out from under millions of Americans. Shame on you for calling yourself a senator—a representative of the people. You know better. Do better!
