Health Insurance - I cut off parts of my body because insurance would cover it—but not the cancer I'm sure to get
This post was written and reported by freelance contributor Darlena Cunha through our new Daily Kos freelance program.
I am a 35-year-old mother of identical twin girls who are
now 10. And I just cut my breasts off, even though there was nothing
physically wrong with me. I didn’t want to do it. I had to. Because I
don’t know where our healthcare crisis is headed. Given my genetic
predisposition, I don’t know how long insurance will cover me. I don’t
know how safe I am from the dreaded sick pool. Worse yet, I don’t know
if my daughters will even get coverage at all.
I carry a BRCA 1 mutation, which doctors said put me at
an 87 percent chance of developing breast cancer. With two aunts and a
cousin having undergone cancer treatments in the past five years, and my
grandmother and many of her sisters developing breast cancer in their
late 30s and early 40s, I was told my best shot at surviving this
condition with the least amount of trauma was to surgically remove the
offending tissue before it could offend.
These new breasts, while they still look like me (my skin
and nipples were spared), are intruders: hard, unmoving balls on me,
preventing me from doing pushups, making it hard for me to even pull
open doors. Have you ever felt your pec tense on top of a water balloon
in your body? It’s a unique and disturbing feeling.
I wanted to wait. If universal health care hadn’t been
under attack, I would have waited. But with Trumpcare looming, I had to
get a procedure I didn’t want, and didn’t technically yet need.
Otherwise, I knew I might not ever be eligible for health insurance
coverage again. My genetic makeup isn’t yet a pre-existing condition (it
soon could be), but cancer is. And if I’m genetically predestined to
get cancer, what insurance company would take a chance on me if they
didn’t have to by law? I certainly couldn’t afford the treatment myself.
I love my body, and having to say goodbye to pieces of it
is hard. To have to do so preemptively, before there is anything wrong
with me, is harder still. To have to do so because of money is gutting.
In essence, getting a mastectomy was 80 percent covered
last year, guaranteed by the United Healthcare insurance we were covered
under through my husband’s job.
The Affordable Care Act specifically stated that pre-existing conditions as determined by genetic testing were protected.
Without that protection, my health future is up for grabs. At any
point, though it hasn’t happened yet, my genetic makeup could render me
ineligible for insurance coverage.
Think of it. To an insurance company, I look like a huge liability.
Sure, I don’t have cancer right now, but an 87 percent chance of
developing it does not make me a wanted bet. They know eventually
they’re going to have to pay up big, and now that my genetics are in my
file, I cannot hide that I am very likely to get very sick someday.
Right now, there is a 2008 law on the books called the Genetic Information Nondiscrimination Act (GINA).
It protects family history and DNA tests and genetic indicators from
health coverage discrimination. But only until you start developing
symptoms.
Let me give you an example of what this means. Last year,
I was doing cancer screenings every six months. I did a mammogram, a
transvaginal ultrasound, and an MRI every year. So long as these tests
came back negative, they were covered 100 percent. Then one day I had an
MRI come back positive for some sort of tumor. On top of the very real
scare that I now did have the cancer I’m supposed to get, that test, and
all others after it, changed from “preventative screenings” to
“diagnostics.” Under the insurance I held at the time, I still had 80
percent coverage. But if I’d had to switch to new insurance (which I
have now had to do, just months later), it would have been considered a
pre-existing condition, and the new insurance company would have been
off the hook. And I would have been left to fend off my intraductal
papilloma out of pocket.
Now, take that real-life example and pretend it had been
cancer instead of a benign cyst. I would have been done for. Once you
develop any symptoms at all, your genetic makeup becomes fair game for
discrimination under the new administration’s healthcare ideas.
GINA also does not protect life insurance, disability, or long-term care, and we have already seen genetic testing being used in those areas to deny coverage.
BRCA is not the only thing we have to worry about. There
are thousands of genetic conditions people carry around with them, and
we now have the science to see them. Twenty states are challenging the
ACA protections that allow patients to continue to be covered after they
develop symptoms, and the Trump administration agrees with those challenges.
This means that as soon as 2019, we could see insurance
companies dropping coverage of people with pre-existing conditions or
charging them higher premiums by far, if they even offer coverage at
all.
To me, all of this meant that I had to get surgery
immediately. I can’t have a pre-existing condition if I get rid of the
parts of me that could get cancer before they do. It’s drastic. And it’s
completely necessary. Otherwise, who knew how much coverage would be
offered in the future? I couldn’t take the chance because I know we
couldn’t pay out of pocket. I made the leap.
Without the marketplace, without the Obamacare staples in
place, with each new attack of the Republican administration, my entire
family will be left out to dry. Uninsured because we can’t afford it.
Uninsurable because our genes have been marked as sick.
I say “we” and “our” because of my two girls. The
insurance industry knows I have a BRCA mutation. They know it's genetic
and they know my girls have a 50 percent chance of having it. When the
twins turn 18, will they have to be tested for their pre-existing
condition? Will they be denied care even as teenagers?
As my twins grow up and have to navigate the world, I
worry about their ability to receive medical care. I worry about them
being sorted into the sick pools that are already forming, even though
they aren’t technically sick. I worry the screenings and preventative
care available to me may be too expensive for them as our insurance
system unravels.
Imagine a life in which I have taken these preventative
measures, and, because of this, I live cancer-free. Next, imagine that
the insurance rules change and the system crumbles, and my children are
not afforded the opportunity for preventative care. A future with fewer
choices, not more. A future where people like my children may end up with a deadly disease I was able to prevent in myself.
Trumpcare forced me to chop my boobs off for my own safety. And Trumpcare may prevent my children from being able to do so.
In response to the current situation, ten Republican senators have just introduced a bill
to preserve coverage of pre-existing conditions, should the courts side
with the 20 states that are challenging the ACA this very month. Their
hands were forced after the administration chose to rest on the side of
profit over people. These senators introduced the “Ensuring Coverage for
Patients with Pre-Existing Conditions Act” knowing the American people
disapprove of getting rid of the protections by a margin of 36-64
percent. They know their jobs are on the line.
The best thing we can do about it as citizens and
residents of this great country is to start calling them about it. We
are still in a place where we can do something about the dehumanizing
legislation coming down the pike. Let’s do it. It’s a whole lot easier
than major invasive surgery, and it would make a much bigger difference
to many more people.
source : https://www.dailykos.com/stories/2018/9/18/1796423/-I-cut-off-parts-of-my-body-because-insurance-would-cover-it-but-not-the-cancer-I-m-sure-to-get