Here is the letter I wrote to my senator today:
June 13, 2017
Dear Senator,
I am writing to you today to express my concerns about the proposed
healthcare legislation currently begin considered by the Senate. My concerns are many
and very personal.
My seven year old son Caleb was diagnosed with cystic fibrosis when he
was three weeks old. As you may know, CF is a genetic condition that affects
several body systems and has a current life expectancy of forty-one years. In
the 1950’s children born with CF were not expected to survive long enough to
attend elementary school; now people with CF are living into adulthood, having
families and careers of their own. These incredible improvements are the direct
result of improved access to preventative care and cutting-edge therapies.
There are only 30,000 people currently living with cystic fibrosis in
the United States. As you can imagine, the financial cost of keeping Caleb
healthy is very high. In fact, without insurance, my husband and I would be
completely unable to cover even one year of Caleb’s medical bills with all of
the savings (including retirement) we have been able to accumulate since
entering the workforce almost twenty years ago. Even basic preventative care
for Caleb would be impossible outside of health insurance and one hospital
stay, an inevitability in the lives of most with CF, would bankrupt us.
Caleb is currently very healthy and we have tremendous hope for his
future. Without access to his daily medications and treatments, however, CF
becomes a death sentence. While Caleb remains healthy, my husband and I can
both continue to work and Caleb can attend school. Changes in his access to
quality healthcare threaten more than just his health.
I will be honest, Senator; I am afraid. I can’t imagine knowing it is
possible to extend and improve the quality of my child’s life and not be able
to afford it. High-risk pools for the chronically ill are not the answer; even
the most generous subsidies would not make the cost of Caleb’s medical care
within our reach. Lifetime limits scare me to death and I hope we never go back
to the dark days of pre-existing conditions.
My husband and I are both educated professionals, working hard to
support the economy of this great state. We are conscientious in our
decision-making, save for the future, and try very hard to “play by the rules”.
We did not ask for our child to arrive with these special needs. We pray for a
cure, and in the mean-time, we do all we can to keep Caleb healthy.
Please consider carefully the
decisions you are making in the coming days. Your actions will have the
greatest impact on your most vulnerable constituents. We have no way of protecting our son’s
access to affordable, quality healthcare. For that, we are counting on you.
Sincerely,
Caleb’s Mom
If this doesn't hit them right in the heart, then we have truly lost this country to people who no longer have our best interests anywhere remotely in their mind...
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