I know it's been a long time since I've posted, and this is quite a post to come back with. I've been focusing my writing on this open letter to the President of the United States thanking him for the Affordable Care Act, a.k.a Obamacare. It's been several months in the making.
I know I'm getting into too long; didn't read territory, but I've already cut out 1,500 words, and I don't think I can paint the picture of a life lived according to health insurance without telling the whole story. Telling my story is important to me.
I've added subheadings to this version of the letter to help guide you.
So as we approach the election, I'd like to share with you why Obamacare is important to me, why I volunteer to make calls for the campaign and why I tend to get carried away with this issue on Facebook.
Introduction
November 4, 2012
President Barack Obama
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500
Dear Mr. President,
I’m writing you today to thank you for the
Affordable Care Act and share my health insurance story, in the hope that it
could help you and your administration defend the law and your presidency.
This is an open letter that I plan to share. It is written as much for the entire country as it is to you.
I am not better off than I was four years ago, but
not because of the economy or anything the government could have prevented. In
November 2010, I pinched nerve in my cervical spine that triggered fibromyalgia
and changed my life.
I had just gotten a new job, and four days into
training I resigned to stay in good standing with my new employer. My plan was
to return for the January training class when I was better. I was never able to
return.
Now that I can’t work, Obamacare is more important
to me than ever. As a person with a pre-existing condition, Obamacare has eased
my concerns about getting health insurance if I am unable to work full time
again. If I am able to work full time, I know I can pursue something meaningful
without giving up coverage.
To truly understand why Obamacare is so important
to me, you have to hear my story. It’s a long story, but it illustrates many
different points. I think the sum total of my experiences paints a picture of
how health insurance has affected every major decision that I have made in my
adult life.
You’ve probably heard lots of stories about people
with pre-existing conditions who don’t have coverage. My story is about the
sacrifices and work it has taken for me to maintain coverage without gaps.
My Story
My story actually begins five years before I was
born in 1974. That year my mother graduated from college and my parents got married.
After she graduated, Mom worked for the Graduate School of Library Sciences at
the University of Texas while Dad finished up his teacher certification and
tutored. It was also the year my Dad began to suffer from what turned out to be
a kidney stone.
Around Christmas of that year, my Dad’s pain became
unbearable. My parents went to the hospital, where they were shocked by the
large upfront payment they had to make.
They didn’t have health insurance.
My father’s job didn’t offer health insurance. My
mother started her job in August, and the enrollment period for insurance was
in September. The deadline came up so quickly that she missed it, a mistake she
blames on her youth. At the time, they didn’t think it would be such a big
deal. She planned to enroll the next time around.
My Dad’s kidney stone wiped out all the money my
mother had saved from her part-time jobs in her senior year of college.
After this incident, my parents never went without
health insurance again, and over time my mother became the family health
insurance expert. Mom told me this story over and over again to illustrate the importance
of maintaining health insurance, something that would prove to be a challenge
for me.
When I started college, I still had problems with
moderate asthma that started as a teenager. I was also taking an antidepressant
that was making a world of difference.
I was already well aware that I had a pre-existing
condition, and that maintaining health insurance coverage would be extra
important for me.
In 1998 I started going to college out of state at
the University of Oklahoma, away from my home in Austin, Texas for the first
time. In October 2000, I dropped out due to the first of several major
depressive episodes. The mild antidepressant wasn’t cutting it anymore. My
grades had plummeted. I missed class because my sleep was erratic. I was
constantly worried.
Back then I could stay on their parents’ insurance
as long as I was a student. Now that I was not a student, how much longer could
I stay on my parent’s insurance? I was only 20.
The months that followed are a blur of anger,
sadness and calls to the insurance company about extensions and grace periods. If
I didn’t go back to school soon enough, I would be kicked off my parents
insurance, and I needed a plan.
At one point I considered putting off college,
getting a job and moving out on my own. I got a part time job at a clothing
store, and I looked into a full time position that would have provided health
insurance. However, I would have been stuck with lifetime limits on mental
health visits that were more stringent for people with “severe mental illness.”
Eventually, I went back to school before I got
kicked off of my parents’ insurance. I majored in print journalism at Texas
State University in San Marcos, Texas, and I spent my entire last semester
applying for reporting jobs all over the country. I wanted to move away from
home and have more adventures, and I was determined not to move back home after
graduation in May 2003.
I don’t know what would have happened if I had not
been able to move. Would I have found newspaper work that offered insurance?
Would I have had to put off my career to get insurance? Would I have been able
to get any job that offered insurance?
I took a job at a newspaper in a Florida retirement
community. My health insurance kicked in after just 60 days, which was better than
some employers, but it was still a challenge. We weren’t sure if I’d be kicked
off of my parents’ insurance right away, so we decided to act like I didn’t
have insurance. Then we hoped that nothing would go wrong in that 60-day
period. If something did happen, maybe I’d still have coverage.
I didn’t fill any prescriptions during those 60
days. Fortunately, my doctors back home understood my situation. I had
appointments with all of them before I left home, and they sent me home with
paper bags filled with samples.
Luckily, those first 60 days went smoothly. I
didn’t have to file any claims.
I stayed at that job until February 2005. I left
because of a complicated combination of local politics and office politics. The
paper I was at was not practicing good journalism.
However, I wanted to leave the paper on December
20, 2004. It was my 25th birthday, and it was the day my editor decided
that she couldn’t take it anymore. She tendered her resignation.
We’d both been planning to leave. I admired my editor
and I wanted to be loyal to her. I consider her to be a friend. I had written
my letter of resignation a long time ago. I’d been applying for reporting jobs
all over the country for a couple of months by then. Just like my last semester
of college, I was ready to move anywhere in the country.
For a while, I convinced myself that I could get
coverage without a job lined up. If my editor could live without insurance, so
could I.
I called my mother to tell her I was about to quit.
My income was mentioned, but our conversation revolved around health insurance.
Mom succeeded in talking me out of quitting that day.
After I accepted a job at a different paper a few
hours away I finally submitted my resignation. My former editor drove the
moving truck.
At first I was excited about my new job. I thought
I was moving up in the world. But I grew to hate working at that paper. It
wasn’t until years later that I admitted to myself that I was bullied, and I
wasn’t the only one.
I felt trapped because of my insurance. I didn’t
take my complaints to human resources or report the bullying and discrimination
my coworkers endured because I couldn’t afford not to have health insurance. Aside
from the usual worries about coverage gaps, I worried about being accused of
“gross misconduct” if I were fired in such a volatile work environment. “Gross
misconduct” would have made me ineligible for COBRA altogether.
I got more and more depressed. The more depressed I
got, the more my worked suffered. The more my work suffered, the more I was
bullied. The more I was bullied, the more depressed I got.
Eventually, something snapped and I experienced the
worst bout of anxiety and depression I’ve ever experienced.
One day I left work early and checked into the
hospital. I took several weeks off after that. My Mom flew in several times to
care for me. Finally, after an unsuccessful attempt to return to work, I was
terminated under the Family Medical Leave Act in August 2006. After being
absent 12 weeks, the company was no longer obligated to hold my job. This
wasn’t “gross misconduct,” and that was all I cared about. I moved back to
Austin.
In January 2007 I got a job (with insurance) as a
telemarketer focusing on lead generation.
I didn’t have any major incidents until a Sunday
night in December 2008. My parents took me to the emergency room because I
thought I had food poisoning. It turned out I had pancreatitis. We still don’t
know what caused it. I was discharged three days later, and I recovered without
any complications.
A few weeks later I got the main hospital bill. The
couple of thousand dollars I had to pay out of pocket was enough of a burden,
but if I had not had insurance, the hospital stay would have cost well over $20,000. That number doesn’t include subsequent bills
for things like the emergency room, lab tests, ultrasounds and doctor visits.
In 2009, my old problems came back, including the
scary anxiety. I took several weeks off work.
I went into the hospital at the beginning of my
time off. A couple of days in, my doctor came in and told me that my insurance
wanted to send me home even though she thought I needed to stay in a safe place
to make faster medication changes. The hospital could monitor me physically and
mentally as I made the transition. The insurance company said I wasn’t a danger
to myself or others, so I didn’t need to be in the hospital. My doctor was
unable to convince my insurance company that I needed to be in the hospital,
and I left early.
About a week later, I had to be hospitalized all
over again.
After my second hospitalization I participated in a
very helpful Intensive Outpatient Program. At one point my therapist talked
about starting her own practice. Things were going well, but as her COBRA ran
out, she realized she that no independent insurance company would take her. The
reason? She had taken an antidepressant
in the past.
She ended up taking time away from her private
practice to work part-time at the hospital, where I was participating in group
therapy with her. Her story broke my heart and made me worry about my own
future.
I realized that unless I married the right person with
the right job, I’d only be able to work at jobs that offered insurance until I
was eligible for Medicare. Any of the other career moves I had dreamed about,
like starting a small business, freelance writing, using my knitting experience
to sell yarn, publishing a book or going to graduate school would have to
happen around a full time job, no matter how successful I was. Up until then, I
hadn’t realized absolutely no insurance company would give me an individual
policy.
After a while, I stopped dreaming altogether.
Insurance blocked me at every turn.
Then, on February 12, 2010 I was laid off from my
job at the call center.
At that point I wasn’t too worried. This was my
chance to move on to something bigger better. I knew I had at least 18 months
of COBRA, and I was sure I’d have a new job by then.
And thanks to your policies, COBRA subsidies saved
me quite a bit of money.
In November 2010, I got the job I mentioned earlier
that only lasted four painful days. I
would have been eligible for a great insurance policy had I been able to
return.
I should have healed in a couple of weeks, but as time
passed my recovery stalled. Physical therapy helped some. I’m definitely stronger
than I was in 2011. For now, the pain and the fatigue prevent me from working.
I’m waiting for the results of my disability hearing.
The Texas Health Insurance Pool: My Only Option Until 2014
In March of 2012, I exhausted my COBRA, including a
six-month extension. After much back and forth and contradictory information, I
discovered that I was wrong before. I was eligible for one health plan even if
I didn’t have a job.
The Texas Health Insurance Pool is a high-risk pool
only for Texas residents with health problems. When I started my premium was
$517 a month.
On top of sky-high premiums, my most effective pain
medicine was not covered by the new insurance. It’s about $140 for 40 days of
pills. I save money by getting a higher dosage and cutting the pills into
quarters. The price is a burden, but until 2014 I don’t have the option of
shopping for a plan that covers this medication.
However, I got good news about my premium recently.
It was lowered to $486 a month. It was lowered because my premium is based on
twice the average premium that major insurers around the state are charging for
individual plans. This is a sign that premiums aren’t skyrocketing the way my Republicans
friends have said.
There are still problems with the plan that won’t
be rectified until 2014. Currently, a man in my same age group, on the same
insurance plan, living in the same area of the state, who also does not use tobacco,
pays $365 a month. Yet my insurance doesn’t cover maternity care. I had to reread
the paperwork several times before I believed it. What am I paying extra for if
I don’t have maternity coverage?
Also, you must have proof of continuous coverage,
or the insurance won’t cover any pre-existing conditions for the first year. People
with coverage gaps are paying a lot of money for insurance that won’t cover
treatment that they need the most.
The Pre-Existing Condition Insurance Plan is a much
better deal. I don’t qualify for it because I do not have a six-month gap in
coverage. I understand that this plan is
an emergency measure to cover more people until before 2014. I’m glad you
created this program so more people could be covered while we wait for the law
to go into full effect.
The Moral of The Story
I know my story is long and complicated, but I tell
it to make multiple points.
First, only the richest of the rich can afford to
pay for their health care needs out of pocket. Everyone hits the wall at some
point. My primary care doctor charges a patient without insurance about $100
for an office visit. A lot of people can’t afford this. In 1974, a kidney stone
was enough to wipe out the savings of a young newly wed couple. My
hospitalization for pancreatitis, including all the charges from different
departments, would have cost me close to a year’s income if I had not had
insurance. A coma or serious brain injury requiring months or years of
inpatient care could bankrupt a family with a six-digit income.
Thank you for tackling this issue and making real
reforms. Thank you for removing lifetime maximums on insurance coverage.
My story shows how complex insurance is. It takes a
lot of work to even understand what it takes to be covered. I wish more people
understood that the Affordable Care Act is long and complex because the health
insurance industry has made its policies and rules complex. To fix all the
issues I’ve faced, not to mention problems like rescission that I’ve never
dealt with, it takes a long bill.
Thank you for seeing the hoops people have to jump
through to maintain coverage, and thank you for not brushing it off as a matter
of personal responsibility when so many people miss those hoops.
My story shows how young people were forced off
their parents’ insurance during one of the most transitory times in their
lives. I’m lucky my parents’ insurance included a grace period, but I would
have been in trouble if I had not been well enough to return to school on time.
At one of the Organizing for America phone banks I
attended, I spoke with a woman who worked at Texas State University. Part of
her job is talking to students after their grades had dropped. She said some of
the students said their grades had suddenly plummeted because they were forced
off their parents’ insurance and couldn’t afford their antidepressants anymore.
Thank you for helping young people maintain their coverage
while their lives are in flux by allowing them to stay on their parents’
insurance until age 26. My 23 year-old sister just got married in August. This
provision allowed them to marry without worrying about insurance or sacrificing
their fledgling careers.
My story demonstrates the power insurance companies
have over our healthcare choices, like my shortened hospital stay in 2009.
Decisions about what is covered, what is medically necessary, what is
experimental and when to rescind a policy are made by people who get big
bonuses based on how much care they deny. I wish more people would realize that
they need to be worried about the decisions private insurance companies make as
much, if not more, than government oversight.
Sarah Palin did a great disservice to the nation
when she perpetuated the myth of government death panels. She imagined horrible
scenarios of disabled children and seniors being denied care that have no basis
in reality. Now the concept of death panels won’t die, and so many people have
an unreasonable fear of the government making health decisions for them.
I know Obamacare doesn’t give the government the
power to make healthcare decisions for individuals, but I would trust the
government to make that decision before I’d trust someone motivated by profit
and bonuses.
Thank you for making it harder for insurance companies
to deny coverage.
Most of all, my story shows the sacrifices it has taken
for someone with a pre-existing condition to maintain coverage before
Obamacare. In my case, I had to carefully time a break from college, stick with
employers who were unethical, keep quiet about workplace bullying, pay sky-high
premiums for COBRA and high risk pool insurance and ignore opportunities and
dreams.
I thank you most of all from freeing me from the
prison that was created by my pre-existing condition. I don’t know what the
future holds now that I have fibromyalgia, but I’m optimistic. In 2014, if
everything goes as planned, I’ll get to shop around for a good insurance plan
through insurance exchanges. I won’t have an excuse not to dream. Obamacare is
my hope and change. Obamacare helps me move forward.
I wish more people would take the time to
understand Obamacare, and I wish less people would fall for the ridiculous
rumors and lies.
Before Obamacare health insurance companies were increasing their profits by creating cheaper, inferior products. They stayed in lockstep with their policies so their customers would have no other choice. Rather than catering to their customer base, insurance companies refused to sell their product to the people who needed it most.
We also forget that Obamacare was a true compromise. Both sides sacrificed. Thank you for truly reaching across the aisle to make it happen.
And thank you for reading my letter, Mr. President.
Sincerely,
Sally Villarreal
Before Obamacare health insurance companies were increasing their profits by creating cheaper, inferior products. They stayed in lockstep with their policies so their customers would have no other choice. Rather than catering to their customer base, insurance companies refused to sell their product to the people who needed it most.
We also forget that Obamacare was a true compromise. Both sides sacrificed. Thank you for truly reaching across the aisle to make it happen.
And thank you for reading my letter, Mr. President.
Sincerely,
Sally Villarreal
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