On December 18, 2012, I was 36 years old and sitting in a doctor’s office learning that either I had a rare eye cancer with up to 5 years left to live, or an equally rare and incurable autoimmune disorder that would result in a long-term chronic illness. Idiopathic orbital pseudotumor with a cranial extension, would soon be a phrase I would learn to memorize along with, I am allergic to azathioprine. I have had 11 rounds of radiation to my brain and right eye. I was on an average of 90 milligrams of prednisone for five years. I’ve had an IVIG transfusion. I now have pernicious anemia from the medicines I’ve taken and have to inject B12 into my leg every three weeks. I had cataract surgery in both eyes due to all the medication effects. I am post menopausal at an early age because all the chemo killed my ovaries. My immune system is constantly compromised because not letting my body fight itself is how I stay alive and keep full eye and brain function. I recently finished my 40th chemotherapy infusion and will probably have 300 of them by the time I die. That is, if I don’t die of cancer before the age of 73. I am considered one of the "lucky ones" because I have health insurance. But the truth is that even with insurance I have to be prepared to pay $7,800 all all at once every July to pay for my treatments. Our medical year begins in July and just one of my infusions costs $20,000 (so that puts us at the end of out of pocket max immediately). With the current Affordable Care Act I have a lot of protections as long as I stay on my wife's insurance, as long as she works full time and as long as I stay married to her. We had to fight with the insurance companies after being twice denied just to get access to the chemo medicine in the first place. We would undoubtedly have to fight again and again if we ever switched insurance. Without my medicine the tumors would continue to grow, slowly and painfully ending my life. I currently live in constant gut wrenching fear about both an end to ACA protections and the long term debt these health care costs incur.
Trump's Broken Promises: Preexisting Conditions
July 16, 2019 • Center for American Progress Action Fund