The little boy in the photo above is my son, Eric. This picture was taken when Eric was 18 months
old. A week after it was taken, Eric was in the emergency room with a condition called diabetic ketoacidosis. Unknown to us,
in the preceding weeks Eric had developed Type 1 diabetes. Without treatment, he would have had convulsions, become comatose,
and possibly died. There is no cure, and he will require insulin injections for the rest of his life unless a cure is found
during his lifetime.
On that day in October, 2008 when I took Eric to his pediatrician,
I suspected what the diagnosis would be. I was praying I was wrong. But I wasn’t.
Eric’s diabetes has meant that my family has had to learn a lot of new things: how to read his blood sugar
six or seven times a day, how to inject him with insulin anywhere from four to six times daily, and how to measure the carbohydrates
in his food so we can give him the right amount of insulin. We’ve had to learn how to handle crisis moments—like
the time his blood sugar dropped so low, he almost became comatose—without panicking so that we can bring him back from
the brink of disaster. He’s too young to do any of this himself, although someday he’ll have to.
But as my family’s sole breadwinner, the person who handles all the finances for our household, there
is another lesson that I’ve learned that has me very discouraged for Eric’s future.
For families with a chronically ill child, the healthcare and social services systems
only work if you’re very very rich, or very very poor.
see, if you’re very, very rich, you can afford comprehensive insurance coverage for your whole family, and any out-of-pocket
expenses don’t impact your overall budget. If you’re very, very poor, there are programs and services available
to you that support your healthcare and medication expenses.
Unfortunately, my family
falls in the middle of these two extremes—as so many families do. I’m not rich by any means—I make less
than $70,000.00 per year to support my family of five on our small farm in Maine. My salary and retirement account are great
enough to put me above the income cap for Medicaid, but not great enough to afford a decent insurance policy. My family is
covered by only very basic insurance—a catastrophic policy that doesn’t cover prescriptions. Since Eric’s
diagnosis, I have cursed it and blessed it. Cursed it, because the coverage is so limited that I still have to pay thousands
out of pocket to get him the care he needs; blessed it, because without it, I’d be bankrupt by now.
That’s the bare truth: caring for my son is something I just can’t afford.
I can’t pay for it out of pocket, and I can’t afford an insurance policy that would cover the costs, and I don’t
qualify for government help. And yet, if I don’t pay those expenses, Eric will sicken and die—and that’s
I’d like to make a very important point: my retirement savings
and my salary level are what they are because I’ve worked hard all my life and saved my money responsibly. I’ve
paid my taxes year after year, always held a full-time job (sometimes, I’ve held two, even three jobs), paid my bills,
and avoided irresponsible debt. And yet, when I need help for my son, it’s those same prudent, responsible habits that
put government assistance out of my reach. Please tell me, in what way does this make sense?
My retirement savings are all but gone—I sold off more than half of my holdings as the stock market plummeted so that
I could pay the hospital bills and keep my debt load down, and the economy is making what’s left dwindle still more.
I don’t dare think about whether my sons will be able to afford college, even though they aren’t yet in preschool.
And this is where my finances are at after only six months of Eric’s illness; I dread to think of what my financial
picture will be a year from now. This whole experience has been agony, as I fight to avoid sacrificing everything I’ve
worked for while also struggling to care for Eric.
My experience as the mother of a
chronically ill child has opened my eyes to the depths of the healthcare problem. I’ve realized two things:
Healthcare reform will never happen as long as health care is regarded as a for-profit industry, where the bottom line is
as important, or more important, than the well-being of patients and families
2. Our current healthcare
system, based on the for-profit model, is irretrievably broken. It’s time, not to try to fix it, but to replace it with
a model that truly values public and personal health above profit. And that’s not a partisan issue for Democrats or
Republicans—that’s an issue that ALL of us need to support.
I am only one
person, a lone voice inside a noisy argument on this subject. But on behalf of my son, my family, and all the other families
struggling with the same burdens I carry, I’m begging you, as one of our elected representatives in government, to put
the interests of the public first as you take up the healthcare debate. To be specific:
1. The insurance industry and drug companies will be lobbying you to do things their way, but they’re
out to protect their profits, not the public. As your constituent, I’m asking you to stand up to the industries that
have pushed healthcare costs into the sky. People are more important than profits.
2. Please work with members of all parties to create a new healthcare system that will help lower costs
for individuals and businesses so that parents no longer have to raid college or retirement savings when a child get sick—sacrificing
their family’s future to support the child’s health. The best investment you can
make for our economic health is an investment in the health of our families.
best solution for healthcare costs is to prevent disease, but for those diseases you can’t prevent—like Type 1
diabetes—the next best solution is to cure them. Please support efforts to fund research
and development of new treatments for diabetes in all its forms—and make sure that the end products of this research
are kept low-cost and readily available to the public. It makes me absolutely nuts when I learn that drug
companies use the cost of R&D as an excuse to put a high price on medications and treatments that were developed, in part,
with government research money or in government-funded facilities. And please, PLEASE, undo the ridiculous restrictions on
embryonic stem cell research that were put in place by the Bush administration.
that this letter provides you with information and motivation to act in the best interests of our nation. If you want more
information about what obstacles are faced by the families of children with diabetes, visit www.tudiabetes.com. It’s
a web site for people with diabetes, and there you’ll find many stories of what life is like with this condition. My
own page is www.tudiabetes.com/profile/Elizabeth37.
Thank you very much for your attention.