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Health Reform Opponents to the Desperately Ill: Need Money for Treatment? Hold a Bake Sale!

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I had to choose between tires and treatment for stage 4 Lymphoma this winter. Needless to say, my jeep has been skidding around out of control all winter. Now I need new tires, replacement windshield wipers, and a new tail light.

And amidst a recent chemo-induced illness, one that had me babbling incoherently with a temperature of 102.1, I never stopped keeping tabs on my fate being decided for me beyond my bedroom walls in the meeting rooms in government buildings all over the country. It seems like everything so many have worked for to protect the sick is being torn apart piece by piece. Maybe these people have forgotten that there are actual patients and lives attached to these bills.

New Hampshire, my home-state, is seeking to repeal the state's high risk pool, and the authority to implement federal health care reform. They're seeking to reinforce insurance maximums that would cut off treatment possibilities for people like me who are very sick, and close to our lifetime caps.

In response to one cancer patient's testimony, a representative interrupted to state this: "Americans are generous people..when someone in their community has cancer and no insurance, they're going to rally, they're going to fund-raise, and they are going to get the treatment that person needs."

Well, yes, I have been very fortunate to have a fabulous community that has supported me throughout my illness. However, I have never had, say, a bake sale, that collected $813,890, the amount hospitals submitted for my care during 2010. I've never had a party raise $580,262, the amount my insurance company actually paid during 2010.

How much would a cupcake cost at that bake sale? And where would the rest of my health care costs, my co-pays, my travel expenses, food, housing, etc. come from? How many bags of coins would my neighbors have to donate to help me out on this part? That amount has totaled upwards of $20,000 yearly since my diagnosis.

I've had my current insurance two and a half years. An educated, conservative, guess is that $1.4 million has been spent so far. At this rate, I will run out of funds within a year. If this bill is repealed, I will hit my lifetime cap. I will be forced to stop treatment or to alter my treatment. I will find a way to continue and survive, but who is going to pay?

I have done everything I can to stay afloat. I have budgeted. I have cut coupons. I've foregone treatments. I've rationed medications. I've forced myself to work. My husband works incessantly. This week, during my illness, I tried to alter my treatment schedule so I could sell my jewelry knowing that is my only source of income.

Yes, we've been helped through fundraisers, but we are still not comfortably able to have both health care and the American Dream. We have an American Nightmare, and we are not alone. Not everyone is as fortunate as us to have close family to babysit, cover medications, or take days off work to be a caretaker. Some Americans have nobody.

Just like the sick are forgoing treatment, waiting until their tooth aches turn into abscesses or their strep throat turns into rheumatic fever before running to the emergency room more sick and needing more expensive care, our representatives are waiting until the situation is catastrophic to make a plan and implement change. Just like a trip to the ER instead of a clinic or Primary Care Doctor, this fix is going to be far more expensive and less effective. And when elected officials blithely suggest that I hold small-town fundraisers while I'm struggling to stay alive, this is what the comfortably healthy are saying to the very sick: let them eat cake.