What Repealing Obamacare Would Mean for My Daughter, a 2-Year-Old Heart
Transplant Recipient
Saturday, 19 November 2016 00:00 By Cole Gelrod, AlterNet | Op-Ed
While we never anticipate medical catastrophe to land on our doorsteps, it
can happen to any of us. (Photo: UMHealthSystem)
Watching the results of the 2016 presidential election unfold, I was struck
with the immediate fear that this will likely bring about the end of the
tumultuous ride that was the Affordable Care Act, also known as Obamacare.
Obamacare is far from the solution to our complex health care system. We all
have seen the projections regarding how much costs are going up -- 116
percent in Arizona and above 50 percent in six other states. I personally
know several individuals and families who, given this hike in cost, are
going to make the tough choice to take the penalty and live in the risky
world of the uninsured, because they cannot afford their new rates. This is
unacceptable and was the whole impetus behind the Affordable Care Act.
I understand why many Americans are frustrated and express the desire to
blow up the system. But let's not make the folly of forgetting all of the
amazing steps forward that this legislation made possible. No longer could
insurance deny coverage or hike up costs because of pre-existing conditions.
No longer could chronically or catastrophically ill patients reach lifetime
maximum payouts. More than 20 million Americans gained coverage who did not
have it previously. Medicaid was expanded and numerous waivers helped
families avoid the financial strain of medical costs, particularly poor
Americans (if their states accepted it).
When these features are spelled out, it is hard to imagine why anyone would
want to repeal the Affordable Care Act without a viable alternative. And
that brings me to my family.
In February 2014, my wife and I welcomed our first child to the world. In
the first days of her young life, our daughter Juniper appeared to be
perfectly healthy and happy. And then we took her in for her initial
two-week appointment. What started with the pediatrician noticing her
breathing was slightly deeper than normal quickly turned into our daughter
being admitted to the hospital and on the verge of death within days. She
was diagnosed with dilated cardiomyopathy, a relatively rare heart condition
in which the heart is structurally fine, yet does not function as it should.
This causes the heart to work much harder and become increasingly larger and
more ineffective.
After unsuccessfully treating it pharmaceutically, it was determined that
our three-week-old daughter would require a heart transplant. For the next
six months, we lived in the hospital and waited for a matching heart to
become available. Our daughter made it this long because she was surgically
attached to a giant live-saving machine, the Berlin Heart, which pumped
blood for her failed heart. She eventually received her transplant and is
now living the relatively normal life of a toddler. Unfortunately, a
transplant is not a cure, and she has to take numerous prescriptions daily
and will need another transplant at some indeterminate time in the future.
The pain of knowing the reality and existence our daughter faces hangs over
me and my wife every day.
The pain I haven't been forced to feel, though, is the pain of the financial
strain that traditionally comes with devastating medical diagnoses in this
country. Juniper's medical bills throughout the first year of her ordeal
totaled more than $3 million. Because of Obamacare and the fact that we live
in a state that embraced it, she qualified for a Medicaid waiver. Once this
waiver came through, our financial burden was mostly lifted. Additionally,
we did not have to worry about the fact that she might not ever get covered,
or be forced to pay ridiculous premiums, or hit a lifetime maximum payout
within the first few months of her life. The donor, donor's family, doctors,
nurses, specialists, and medical technology saved our daughter. Obamacare
saved our family.
Juniper, like many people across this country, did nothing to bring this
condition upon herself. Through testing, we discovered that she had a
completely random genetic mutation that caused her cardiomyopathy. My wife
and I do not share the same mutation. There's no way we could have known
about it or prevented it. Through sheer bad luck, Juniper entered this world
with the cards stacked against her. I am a teacher. My wife recently became
a nurse. Like most Americans, bills totaling $3 million and vital
medications that cost $1,000 a month would bankrupt us -- particularly
because one of her prescriptions isn't generic and another is a compound,
which allows her insurance not to cover either of them.
I have to think that most Americans want to keep these aspects of the ACA.
While we never anticipate medical catastrophe to land on our doorsteps, it
can happen to any of us. One takeaway from spending half a year living in a
children's hospital is realizing how many families face the reality of
chronic or terminal illness. I have to believe that nobody wants to see them
lose everything while dealing with tragedy. To ensure that we keep these
things, there must be a feasible and viable alternative in place.
If Obamacare is repealed without setting up an alternative that places
similar regulations on the health insurance field, what is to stop insurance
companies from returning to the same nefarious, calculated practices of
denying coverage or payment that prompted President Obama to act? What will
families like mine, and those who are less fortunate, do if the Medicaid
expansions and waivers disappear? Even if something as seemingly innocuous
as the personal and employer mandate -- which is actually what earns the
most scorn from the ACA's opponents -- is scrapped, that would render
Obamacare financially insolvable, as many more millions of Americans would
simply choose to leave the system, placing the financial burden on fewer
people.
Whatever route is taken in the months after president-elect Donald Trump
takes office will give us all insight into what kind of leader he will be.
In the recent past, he has advocated for a single-payer government-provided
health care system. However, when pressed on it during the primaries, he
disavowed that notion. He has proposed changes as simple as allowing for
insurance trades to occur across state lines, which probably wouldn't be
enough to satisfy the Repeal Obamacare crowd. More recently, once news of
the 2017 rate hikes hit, his talking point moved to unequivocally
dismantling it. In which case, he will instantaneously cause conceivably
millions of his voters and their family members to lose coverage.
Simultaneously, he will further ostracize Hillary Clinton voters, who boast
a 71 percent approval rating of Obamacare. GOP senators and representatives
will also show us if they really think their constituents want Obamacare
gone, or if their repeated efforts to repeal it were political theater aimed
at pandering to voters while banking on the knowledge that President Obama
would always veto their efforts.
Meanwhile, I, like many of my fellow Americans, may be on the cusp of
financial ruin, simply for trying to keep my two-year-old daughter alive.
This piece was reprinted by Truthout with permission or license. It may not
be reproduced in any form without permission or license from the source.
COLE GELROD
Cole Gelrod is an educator and writer. He lives in Denver with his wife and
two daughters. Find him on Twitter @cole_rod.
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What Repealing Obamacare Would Mean for My Daughter, a 2-Year-Old Heart
Transplant Recipient
Saturday, 19 November 2016 00:00 By Cole Gelrod, AlterNet | Op-Ed
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reference not valid.Error! Hyperlink reference not valid. Error! Hyperlink
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. While we never anticipate medical catastrophe to land on our
doorsteps, it can happen to any of us. (Photo: UMHealthSystem)
. Trustworthy journalism with integrity is more important than ever.
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Watching the results of the 2016 presidential election unfold, I was struck
with the immediate fear that this will likely bring about the end of the
tumultuous ride that was the Affordable Care Act, also known as Obamacare.
Obamacare is far from the solution to our complex health care system. We all
have seen the projections regarding how much costs are going up -- 116
percent in Arizona and above 50 percent in six other states. I personally
know several individuals and families who, given this hike in cost, are
going to make the tough choice to take the penalty and live in the risky
world of the uninsured, because they cannot afford their new rates. This is
unacceptable and was the whole impetus behind the Affordable Care Act.
I understand why many Americans are frustrated and express the desire to
blow up the system. But let's not make the folly of forgetting all of the
amazing steps forward that this legislation made possible. No longer could
insurance deny coverage or hike up costs because of pre-existing conditions.
No longer could chronically or catastrophically ill patients reach lifetime
maximum payouts. More than 20 million Americans gained coverage who did not
have it previously. Medicaid was expanded and numerous waivers helped
families avoid the financial strain of medical costs, particularly poor
Americans (if their states accepted it).
When these features are spelled out, it is hard to imagine why anyone would
want to repeal the Affordable Care Act without a viable alternative. And
that brings me to my family.
In February 2014, my wife and I welcomed our first child to the world. In
the first days of her young life, our daughter Juniper appeared to be
perfectly healthy and happy. And then we took her in for her initial
two-week appointment. What started with the pediatrician noticing her
breathing was slightly deeper than normal quickly turned into our daughter
being admitted to the hospital and on the verge of death within days. She
was diagnosed with dilated cardiomyopathy, a relatively rare heart condition
in which the heart is structurally fine, yet does not function as it should.
This causes the heart to work much harder and become increasingly larger and
more ineffective.
After unsuccessfully treating it pharmaceutically, it was determined that
our three-week-old daughter would require a heart transplant. For the next
six months, we lived in the hospital and waited for a matching heart to
become available. Our daughter made it this long because she was surgically
attached to a giant live-saving machine, the Berlin Heart, which pumped
blood for her failed heart. She eventually received her transplant and is
now living the relatively normal life of a toddler. Unfortunately, a
transplant is not a cure, and she has to take numerous prescriptions daily
and will need another transplant at some indeterminate time in the future.
The pain of knowing the reality and existence our daughter faces hangs over
me and my wife every day.
The pain I haven't been forced to feel, though, is the pain of the financial
strain that traditionally comes with devastating medical diagnoses in this
country. Juniper's medical bills throughout the first year of her ordeal
totaled more than $3 million. Because of Obamacare and the fact that we live
in a state that embraced it, she qualified for a Medicaid waiver. Once this
waiver came through, our financial burden was mostly lifted. Additionally,
we did not have to worry about the fact that she might not ever get covered,
or be forced to pay ridiculous premiums, or hit a lifetime maximum payout
within the first few months of her life. The donor, donor's family, doctors,
nurses, specialists, and medical technology saved our daughter. Obamacare
saved our family.
Juniper, like many people across this country, did nothing to bring this
condition upon herself. Through testing, we discovered that she had a
completely random genetic mutation that caused her cardiomyopathy. My wife
and I do not share the same mutation. There's no way we could have known
about it or prevented it. Through sheer bad luck, Juniper entered this world
with the cards stacked against her. I am a teacher. My wife recently became
a nurse. Like most Americans, bills totaling $3 million and vital
medications that cost $1,000 a month would bankrupt us -- particularly
because one of her prescriptions isn't generic and another is a compound,
which allows her insurance not to cover either of them.
I have to think that most Americans want to keep these aspects of the ACA.
While we never anticipate medical catastrophe to land on our doorsteps, it
can happen to any of us. One takeaway from spending half a year living in a
children's hospital is realizing how many families face the reality of
chronic or terminal illness. I have to believe that nobody wants to see them
lose everything while dealing with tragedy. To ensure that we keep these
things, there must be a feasible and viable alternative in place.
If Obamacare is repealed without setting up an alternative that places
similar regulations on the health insurance field, what is to stop insurance
companies from returning to the same nefarious, calculated practices of
denying coverage or payment that prompted President Obama to act? What will
families like mine, and those who are less fortunate, do if the Medicaid
expansions and waivers disappear? Even if something as seemingly innocuous
as the personal and employer mandate -- which is actually what earns the
most scorn from the ACA's opponents -- is scrapped, that would render
Obamacare financially insolvable, as many more millions of Americans would
simply choose to leave the system, placing the financial burden on fewer
people.
Whatever route is taken in the months after president-elect Donald Trump
takes office will give us all insight into what kind of leader he will be.
In the recent past, he has advocated for a single-payer government-provided
health care system. However, when pressed on it during the primaries, he
disavowed that notion. He has proposed changes as simple as allowing for
insurance trades to occur across state lines, which probably wouldn't be
enough to satisfy the Repeal Obamacare crowd. More recently, once news of
the 2017 rate hikes hit, his talking point moved to unequivocally
dismantling it. In which case, he will instantaneously cause conceivably
millions of his voters and their family members to lose coverage.
Simultaneously, he will further ostracize Hillary Clinton voters, who boast
a 71 percent approval rating of Obamacare. GOP senators and representatives
will also show us if they really think their constituents want Obamacare
gone, or if their repeated efforts to repeal it were political theater aimed
at pandering to voters while banking on the knowledge that President Obama
would always veto their efforts.
Meanwhile, I, like many of my fellow Americans, may be on the cusp of
financial ruin, simply for trying to keep my two-year-old daughter alive.
This piece was reprinted by Truthout with permission or license. It may not
be reproduced in any form without permission or license from the source.
Cole Gelrod
Cole Gelrod is an educator and writer. He lives in Denver with his wife and
two daughters. Find him on Twitter @cole_rod.
Related Stories
Trump's Dystopia Is Coming -- but It Will Destroy Itself
By Nafeez Mosaddeq Ahmed, openDemocracy | Op-EdTrump Wins, What Now?
By Michael Edwards, Francesc Badia i Dalmases, Thomas Rowley, Natalia
Antonova, and Adam Ramsey, openDemocracy | News AnalysisConsumers Should
Keep Enrolling in Marketplace Coverage
By Sarah Lueck, Center on Budget and Policy Priorities | Op-Ed
Show Comments
