My name is Emily, I'm 31 and I live in Seattle with my husband and young daughter. Three years ago, I was diagnosed with the genetic disease, cystic fibrosis. My lungs will never function like a normal person's. I will have my lungs slowly lose function until I die of this disease, barring any other circumstances. CF has a median lifespan of 37 years. I am a very unusual case to have made it to adulthood without diagnosis.
CF came into my life just a few years after the passage of the Affordable Care Act. During this awful time, it never even occurred to me that just a few years earlier, a diagnosis would have also led to extremely narrow, if not exclusionary, access to health insurance. For the rest of my life, I will have a pre-existing condition that will make me a liability to health insurers.
Incredibly, the same year that I found out about the disease, a new drug - the first to address the underlying cause of CF rather than managing the symptoms- was made available to a small number of CF patients who had a particular gene mutation. It is one of the two genetic mutations I have. This drug will slow the progress of the lung damage that exacerbates my condition. It costs over $300,000 a year. If I want to outlive my life expectancy, I will have to go on this drug in the next few years. It is not a cure- it is a daily medication that I will have to take for the rest of my life.
Meanwhile, I started receiving care at the local adult CF clinic in my city. There is no shopping around for care. There is only one place to go- because people with CF didn't used to live to adulthood. The cost is astronomical. As probably one of the healthiest patients they see, the sticker price for my annual care approaches $50,000. If the disease progresses, more frequent visits, more drugs, and potential hospitalizations could easily triple that figure in a single year. The good news is, with their care, my health is stable and I will likely long outlive the average lifespan- and even more likely if I start this new drug.
I took the protections of the ACA for granted, and so I only considered my stable health and our happy family when my husband and I decided to have a baby last year. I have a beautiful and healthy baby girl, thanks to the care of high risk specialists that I was able to access over the course of my pregnancy.