by Patrick Appel

A mother describes her family's struggle to keep their daughter Sophie insured:

In fall of 2005, we decided to switch from our private, self-employment insurance that we had used for years to Blue Cross. There was a week long gap between the policies - something that we didn't think anything of, because we simply did not know better. Just as our Blue Cross plan was set to start, we received a notice from them stating that they considered Sophie to have a pre-existing pulmonary problem (due to the amount of doctor's visits for pneumonia), and that while they would cover her in general, they wouldn't cover any pulmonary/respiratory issues until she had gone two years without needing medication or problems. Our reaction: OMG. Actually I believe it was OMFG. All of a sudden, Sophie was without coverage for pulmonary problems. This was absolutely terrifying. What if she got sick?! What if she needed to be hospitalized?! We spent the next couple of months researching every insurance company that we could, begging them to take Sophie. Nope, it wasn't going to happen. And then our biggest fear came true: Sophie got very, very sick.

Since that horrible October in 2005, Sophie has needed hundreds of thousands of dollars worth of treatments, hospitalizations, surgeries, medications, testing, and interventions in order to stay strong and healthy, and in some instances, to stay alive.

She has required three bronchoscopies, the middle section of her lung removed, extensive genetic testing, cardiology work ups, dozens of x-rays, CT scans, and a two week trip to a pulmonary hospital in Denver. When she's healthy, she requires three steroids, twice a day, and when she's sick she is usually on five steroids, twice daily. She's been diagnosed with right middle lobe syndrome (though not anymore, since she had it removed), a genetic mutation of cystic fibrosis, severe uncontrollable asthma, and severe sinus disease.

And while we'll gladly continue to live at the poverty level in order to provide our daughter with the healthcare that keeps her alive, we SHOULDN'T HAVE TO. We would happily pay outrageous premiums and co-pays, and do whatever else it took to get Sophie covered by regular health insurance. But you know what they all tell us?

She has to go two years with no pulmonary medications and no doctor's visits because of respiratory problems before anyone will accept her. Sophie can't go two DAYS without her medications, let alone two years.