Insurance Update

Many have been asking how we are coming along in our insurance battle, and unfortunately we don't have too much to report.  Max's expensive infusion drug is still being denied and we have been through several rounds of appeals.  The issue isn't that we are involved in a clinical trial but that Max's condition is so rare and there is no medical evidence to show which drugs really work, the best cases show that this drug has the best outcomes, but there is not enough cases out there to actually prove it. .  The drug Regence won't cover is a very common drug that is covered for tons of other autoimmune conditions, but it seems that any drugs that we try to treat Max with will all be experimental because there isn't any protocols out there to follow. Last week the neuroblastoma expert at Children's had a peer to peer review with the insurance company to which no progress was made. We should be receiving a hearing date soon, where Josh and I and our doctors will be able to argue our case, hopefully it will be close to home so that we all don't have to travel. Both Josh and I are in the process of preparing a written statement and a statement that can be delivered at our hearing.  Our doctors are trying to compile more information and medical evidence on Max's condition to provide to Regence. The problem is there isn't any! A response I received from a rep from Regence was that " we have never seen a diagnosis like this in all of our years and we will probably never see another diagnosis in our careers, so chances are we aren't going to change any policies."   I think we will just have to pray otherwise =).

We are also trying to work around our insurance issues with Max's outpatient therapy.  We maxed out all of our outpatient therapy benefits by January 15th of this year =).  We have been working hard the last few weeks to get into a government subsidized program called Birth to Three, it's through our local school district. We have been approved and evaluated in all of the disciplines. This week we will start Max's Physical Therapy in this home based therapy program.  Next week we will start receiving Speech Therapy and Occupational Therapy.  They will provide one day of therapy each week for all three disciplines to supplement his other therapy. We will still be followed weekly by the Speech and Physical Therapists at Children's as they are specifically trained in pediatric oncology therapy and will work with our team of doctors. It feels good to start getting into a routine it has been tough juggling all of this and trying to figure out what will work best for Max.