Hi Jennifer,

My husband is self employed and our insurance company would not cover my son after his diagnosis.  We live in Texas and have insurance that is called Texas Health Insurance Risk Pool.  It is a PPO Blue Cross plan.  It is for people that have been denied health insurance due to pre-existing or other medical conditions. We pay $240.00 month for his premium.  It has a $1000 annual deductible and covers 80% after the deductible is met.  We pay a $15.00 co-pay for his prescriptions. 

Any independent insurance "broker" should be able to tell you if there is such a risk pool in your state and how to go about getting coverage.

Best of luck.  Lisa