Last April a baby boy was born to parents who had been wanting a
child for a long while. All the early signs indicated the pregnancy was going
well, and that their son would be a perfectly healthy child. Shortly before his
birth an ultrasound exam revealed that their child did not have arms from the
point just above where the elbow would normally be. His parents had some time
before his birth to prepare themselves to care for a child with this
disability. My daughter and son-in-law are friends with the parents, so our
family has known about this boy since the time before his birth. As you might
imagine, his parents have gone through a range of emotions, both before their
son’s birth and since. They have agonized over the choices that have to be made
concerning his care. A child with no lower arms or hands can’t sooth himself as
other children do. He cannot learn to hold a bottle or satisfy the developmental
urges his brain sends out to reach or grasp an object. He cannot learn to
balance or scoot using his arms to create movement. Because of this impairment
this boy is often very difficult to calm and comfort, and his natural
frustration requires much more parental effort than the monumental effort
parents would normally give a new baby.
Among the choices and decisions that needed to be made were
choices about how and when to introduce prosthetic arms to this baby. It is not
as simple a choice as you might think for a number of reasons, but his parents
chose to begin the process now in the hope that their son will learn to gain
utility from the prosthesis sooner rather than later. That choice was made even
more difficult by the costs involved. I know that in matters like this, and
other health decisions people make, costs should not be the deciding factor.
But sadly, it is a real issue. The issue of money gave me the opportunity to
meet this baby and his parents. My daughter and others have decided to assist
this family with the costs; and the parents began a web site to share their story and ask for help in
securing funds. It is called “Helping Hands Needed”
About a week ago we attended a pancake breakfast and
fund-raiser to support Helping Hands Needed for baby Jameson. My daughter, her
husband, his family, and other friends of the family put this event on. It was
very successful. One of their friends even arranged to get two local TV crews
to come out to do a news story about Jameson and put the donation information
out in the news cast. This was a wonderful out-pouring of generosity and
support for this family. A great deal of money has been raised and I know the
family was deeply touched by the heartfelt support.
Aside from the great efforts to help this family afford what
Jameson needs, and my personal admiration for all those who gave of their time
and their money, I still left feeling very badly about this situation. As I
said, this out-pouring of generosity was truly inspiring- but the problem is
that even with this effort, not enough money (needed for even one set of
prosthetics) was raised. Jameson’s prosthetics will cost approximately
$25,000.00 a year, every year while he is growing. The family has insurance-
but their policy covers well less than half the costs. I won’t go into all the
details about why the costs are so high, but it has to do with needing
different sets of prosthetic arms for different functions during his
development. Jameson’s father works, while his mom cares for him during his
dad’s work time. This is a responsible family, faced with a huge personal and
financial challenge through no fault of their own.
I have been thinking about this issue a great deal lately,
not just because of Jameson, but because of other situations close to me as
well. Over the last year I’ve written four essays about our dear young friend
Molly. (Molly’s Story, Parts 1,2,3 and 4) Molly is still dealing with Breast
Cancer as a young wife and mom. Her most harrowing challenge may be yet to
come. The latest chapter in her story is the financial burden her cancer
treatment has caused. She too has insurance through her husband’s employment,
but their portion of the bills will put them in to bankruptcy, and cause the
loss of their home, their possessions, and all they’ve worked for. Molly
recently put out a plea on a social network for help from her friends, so that
her little daughter could have a Christmas gift this year. Yes, it is that bad! It is heartbreaking to
see this young woman battling for her life, have to face the crushing and
humiliating financial burden she and her family now faces. In my immediate
family, my son-in-law went through cancer treatment some years ago. He was
forced to go bankrupt and has only recently been able to right his financial
ship after losing (literally) everything because of illness.
There are about 1.5 million bankruptcy filings every year.
62% of bankruptcies are due to medical expenses, having nothing to do with financial irresponsibility. Of those due to medical
expenses, over 75% of the filers had medical insurance. Those are the raw
numbers, and most of us are aware of these numbers to some extent. But I ask
that you think of those raw numbers in terms of people you know. In my small
circle, I know three families experiencing extreme hardship
because of health care costs. The plain truth is that most American families
would be ruined by the costs of health care if they have a serious illness,
accident, or chronic condition to deal with. The bankruptcy numbers don’t even
count the millions who struggle for years with these costs and can’t or don’t
file for bankruptcy. In spite of wonderful intentions, there are not enough
pancake breakfast fund-raisers, bake sales, or pleas for help on Facebook to
solve the problems so many of our neighbors face. Hands for Jameson will cost
$75,000 in just the next three years alone. Is it right that his family or
Molly’s family should have to go to bed every night not knowing where the money
will come from, and knowing that the costs will eventually overwhelm them
leading to life-long debt and deprivation? In the richest country in the history of the
world, this should not be happening.
There is a solution for these families and the millions more
across our country who struggle with the overwhelming burden of health care
costs. I hope that situations like the ones I’m describing cause us to start
thinking about government policy in terms of people we know; and more
importantly using our vote to promote new policies that change this horrible
health care system. Policies matter- the values of policy-makers (elected
officials) and political parties matter. We should conduct the business of
health care in this country on the premise that health care is a right. We can
and should decide, as a people, that our nation has an obligation to ban
together to care for its members-not only to provide the actual health care,
but to protect families from financial ruination. A financially ruined family
does not enhance the moral fiber or economic strength of this nation.
I know there will be those who will cry out that we can’t
afford to provide for everyone- they will sound the alarm bell of individual responsibility.
But I challenge that assumption. This country comes together to provide for the
defense of everyone- we provide for a sustenance for all our elderly members-
we come together for any number of things most of us take for granted. Our
nation is still the richest nation in the world- so we can choose what to spend
our wealth on. For instance we are now spending two billion dollars a week for
a forsaken war in Afghanistan. For reasons I cannot understand we have built a
health care payment system that relies on employer provided group insurance or
private pay insurance for the majority of us. The common feature of this system
is that is a financial enterprise with a fiduciary obligation to produce
profits for share-holders. In essence, we entrust insurance companies with
decisions about our health and finances knowing that they exist to produce a
profit with our premiums, by controlling what they will pay for. Their very
existence is based on a profit motive-not a health care motive! No other advanced country does this.
Those countries have seen the wisdom of using the collective power of their
societies (and yes, I mean slightly higher taxes) to provide for the common
good of their citizens. They have come to realize it is well worth it to have
single-payer systems that don’t need to produce profits. Families in those
countries don’t need fund-raisers to make sure their kids have medical care. These
systems cover all citizens, emphasize prevention, and have lower costs. We have
the highest quality health care in the world- but rank far down the list in health
outcomes because we leave too many of our fellow citizens without coverage or
with inadequate coverage. Our great health care should not be reserved for the
richest among us- but it is.
The last election demonstrated that a majority of us still
value the idea of community in this country. We have to continue that march. It
is important to remember that there are people in our lives who are directly
impacted by policies and decisions in government. That’s why government is ultimately you and me. You and I
need to think about Jameson, and Molly, and Landon when we consider what kind
of country we want this to be, who we will elect to run it, and how we treat
our fellow citizens.
Thanks for looking in.
P.S. Jameson’s parents are recording their lives on the link
below. If you have an interest in
following Jameson’s story, or wish to contribute to his family please go to:
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