#KYSays: Political Jockeying About Health Coverage is Creating Anxiety

By Kentuckian Amy Shir.

Preparing for a colonoscopy is not fun. I’m 53 years old, have had Crohn’s Disease for thirty years, and have probably had 20 colonoscopies. My brother has Crohn’s, too. It’s hereditary and we have cousins on both sides of our family with the disease. My mother had colon cancer as did my paternal grandfather, who died at the age I am now. We’ve got genes that predispose us to this disease. Ours is one of many pre-existing conditions that has nothing to do with whether we are “people who lead good lives,” or have “done things the right way,” as Alabama Congressman Mo Brooks suggested in an interview last week about the Republicans’ callous and wholly inadequate “replacement” to the Affordable Care Act.

I was diagnosed with Crohn’s Disease in my early twenties. I had been an athlete and was running during college. I started having diarrhea after every run. After college, I developed pain, had blood in my stool, and received my diagnosis. I had been very active, maintained a healthy weight, but found myself with a chronic disease as a young adult. This was pretty depressing, which is not an uncommon feeling for people suffering chronic illnesses.

With Crohn’s, there are several drugs to try, and every individual is unique. I had to try several different medications before I went into remission. In order to assess the efficacy of my medication and to monitor potential side effects, I have to get blood work quarterly to ensure that my liver isn’t being damaged. My annual colonoscopies are necessary to biopsy polyps and check for intestinal cancer. Over the years, I’ve been on drugs with serious side effects. After a few years, I’ve had to try new drugs to keep my symptoms in remission and prevent liver damage. I’ve been on flagyl, pentasa, purinethol, remicade infusions, and Humira. These drugs would be cost-prohibitive without health insurance and under the new GOP health care legislation.

So, fast forward to my colonoscopy this past January. My gastroenterologist didn’t like the way my colon looked so he took me off of Humira and put me on mild steroids. Unfortunately, my symptoms flared and I was told to get a CAT scan. The scan showed that my appendix and the surrounding area were very inflamed. I was sent to the hospital because it looked like I had acute appendicitis and might need surgery immediately – to remove the appendix and resect the diseased part of my colon. Fortunately, the surgeons at the hospital took a good look at my scan and thought that my appendix was inflamed because it was in a bad neighborhood. Instead of cutting, they prescribed high doses of prednisone and had me stay in the hospital a couple of days to hydrate and stabilize.

The good news is that the steroids worked and I was released without needing surgery. Another piece of good news is that my husband and I bought health insurance on the federal exchange. Although we took a big hit early in the calendar year and had to pay the maximum out of pocket expenses - $9,000 within the first two months of the year - our costs would have been much higher with the GOP American Health Care Act that Congress has sent to the Senate.

Because my husband and I are self-employed, our current health care expenses total almost $30,000 per year WITH health insurance. If you think that’s outrageous, the AHCA would be much worse. A recent analysis by the Center for American Progress estimated premium increases for common pre-existing conditions. While Crohn’s Disease didn’t make the list, colorectal cancer, at which I’m at much higher risk for contracting one day, would add a 700% surcharge to our current rates. We are worried sick about the impact of this bill for small business people with pre-existing conditions like us.

All of the rhetoric by GOP lawmakers that I caused my chronic disease, should move to a state with better health benefits, and be in a higher-cost risk pool make me depressed and anxious. We have two children in high school and want to be able to help them go to college. We would also like to be able to save for our retirement.

For us, and too many of our fellow citizens, health care is the only thing standing between us and the American dream. The GOP’s plan removes the guaranteed protections my family relies on to maintain our health and has allowed us to be successful entrepreneurs. Without these protections, my husband or I will almost certainly have to shutter our business and work for a large employer that offers health insurance.

My husband and I pay taxes. All of this political jockeying about our health insurance has millions of people just like us, stressed out. My husband and I (and millions of others like us) think it is (past) time for Congress to pave the way for single-payer health care for all Americans.

We implore our fellow citizens to call your Senators and ask them to enact legislation that guarantees health care for All Americans. Ensure that our health care legislation doesn’t discriminate and punish individuals and families for pre-existing conditions. Call your Senators today.