I have always avoided politics on my blog because, honestly, I just don’t feel the need to debate my ideals. I hold no contempt for the views of others that don’t match my own. I may not understand the views of others, but I respect their choice. Today, I’m going to talk about a politician because what is going on in Washington is going to directly affect my life and the lives of millions living with chronic illness.
Pennsylvania Senator Pat Toomey has been interviewing the Human Health and Services secretary nominee Congressman Tom Price. They were discussing that Pennsylvanians who purchased insurance through the Affordable Care Act only had one choice of a provider. He then goes on to discuss pre-existing conditions. I’m going to copy/paste the exact transcript from phillymag.com to make sure I get it right.
Senator Toomey says:
“When we talk about repeal, sometimes I hear people say we’ve got to keep coverage of pre-existing conditions. When I hear that, I think we are missing something,” Toomey goes on to say. “There’s obviously a number of Americans who suffer from chronic, expensive health care needs. They have had these conditions all their lives or some other period of time. For many of them, the proper care for these conditions is unaffordable.
“I think we agree that we want to make sure those people get the health care they need. One way to force it is to force insurance companies to provide health insurance coverage as soon as they show up, regardless of what condition they have, which is kind of like asking the property casualty company to rebuild the house after it has burned down. ” (Link here: http://bit.ly/2j9zXcc)
Wait…..what???? Did my senator just compare my chronically ill body with a burned down house? Why yes, he did! Wow. Is my body is similar to a burned down house? A worthless pile of rubble?? An eye sore? A useless entity that must be “rebuilt”? Now to be fair, he went on questioning how to provide affordable insurance to people with pre-existing conditions. His interviewee, Congressman Price, never really responded that there was an affordable means to accomplish this. His lack of response scares me more than Toomey’s comments, but I digress. Don’t we all wish our job interviews allowed us to provide incomplete answers and still get the job??? I also can’t tell if Toomey is for protecting people with pre-existing conditions or not, because honestly, he didn’t push for a response.
Later on, (after people took offense to Toomey’s ill-spoken terminology) his spokesperson said the analogy of a “burned down house” was used to describe how insurance markets work and the increasingly high prices of healthcare. Well, I’m sorry but Senator Toomey didn’t say INSURANCE markets were like a burned down house that needs to be rebuilt. He said that people who get insurance, regardless of what condition they have, are like a burned down house. Just another way of blaming the sick person for being sick instead of blaming the system for making a fortune off of the pain and suffering of millions. By the way, don’t we have insurance to rebuild our homes in the case of fire?? Isn’t that what insurance is supposed to do?? Isn’t that why we have it?
Well, Senator Toomey, you think I am a burned down house, well let me tell you what this burned down house can do. I am a speech-language pathologist who works both a full and part-time job to make ends meet. I also work full-time in the summer to help provide extra for my family when most teachers are off from work. I volunteer by advocating for both patients and speech-language pathologists in my “free time”? I am a well-educated, employed, law abiding, tax-paying, independent woman. I’m not worthless. I do not need to be rebuilt. I am a person living with disabling diseases who strives daily not to become disabled. I want to be a productive working citizen. I want a career. I want to live my life to the fullest. I want to receive a treatment that makes my pain manageable enough to keep doing these things. But mostly, I want to know that I can’t be dropped from insurance or charged an exorbitant fee that I am unable to afford, then left to suffer while my diseases progress and disable me completely.
As a resident of Pennsylvania, I have twice been to Senator Toomey’s Capitol Hill office in Washington DC. The first time I visited was in 2013. I was representing my state for the American College of Rheumatology (ACR) . I met with one his liaisons and was asking for Senator Toomey’s help to regulate the cost of Tier III drugs set by insurance companies. Some of these drugs, like the one I take, cost $8,000 and higher and are thus unaffordable to many people who may benefit from the medication. Without these drugs, many people do become disabled. His representative looked at me and said, “I’m sorry, but there just aren’t enough of “you people” for Senator Toomey to get involved in this fight.” In other words, I wasn’t worth it nor were others like me living with chronic illness. Medication and insurance costs have spiraled out of control, and we the patients, have paid dearly with both our money and our bodies. At the same time, insurance and pharmaceutical companies continue to make profits, while patients and doctors go bankrupt. Don’t get me wrong, I know that we need the insurance companies to insure us and we need pharmaceutical companies to develop drugs for us. What we don’t need is to be bankrupted for being sick.
I did not ask to live the chronic life, but I plan to live it well. I will not sit idly by as the political and corporate worlds try to dictate what is best for me. I may be one small voice, but it will be heard. Why? Because I am NOT a burned down house.
Let your voice be heard. Contact your representatives to make sure they hear what real constituents want and need in terms of health care. Your needs may differ from mine, but it’s time to stop Washington from making decisions for us and start making decisions with us.
//www.c-span.org/video/standalone/?c4651662
asmyjointsturn.com 
I burned down my house in 1974, and for fun, I burned it down two more times after that. I have been fortunate that for all my life except two years I have had health insurance. Those two years I was in college. But when I think of what separates me and those without insurance I realize a simple truth. It is not very much. It is true I have worked hard and I have been well educated, but I know those without health insurance who are the same.
Then I look at Senator Toomey and I realize what I think he does not. What separates me from him? It’s the same, not much. I wish he realized that.
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Well said! He simply does not get it at all. My fear is always that I can no longer work and will lose my home. I have no idea how I would keep it. My cousin said it to me years go. Losing your health shouldn’t mean losing your home. I feel like Toomey clumps “sick” people together as a whole. He doesn’t see the spectrum of the chronic life. People with my same diagnosis are completely disabled while others are way more mobile than I am. We are not the same. I also feel like he thinks we are all trying to sponge off the system. That is so not true. I prayed he would be voted out, but he won.
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