Friday, June 28, 2013

No Trial

What a day. Words cannot express the mix of emotions we have experienced. We walked in to MD Anderson today, ready to begin this trial. Ready to start treatment and then to go home. Little did we know we would have a major roadblock in front of us. The past 3 weeks MD Anderson has been going to battle with our insurance . This clinical trial is with FDA approved drugs and the drugs are already paid for by a pharmaceutical company. But, to be in trial you need approval from insurance for standard MRIs , blood work etc. You also need approval if you were to encounter any hospital stays during this trial. We have been denied, denied , denied. They do not want to cover any sort of trial. This is very frustrating considering we have done two years of the standard treatment ( which we also had to fight to get covered) and David is a physician for Scott and White Health program and can not get coverage with their health care system. I am so thankful to Glenn Robinson, Jim Morrison, Robert Greenberg and Dr Keith Stone who have spent the last several hours trying to get a yes for us. The lady we need to say yes ( who has said no) was in a meeting till 5 today and unreachable. Hearing David on the phone with her assistant , was so disappointing. Her saying refusal because of potential complications from trial and David basically saying, I have brain cancer, trial or not I will have hospital stays. This is not something we have asked for in our lives , which sometimes fighting insurance you want to say to them.

We now leave with no medication , but with hopes on starting something Monday. If we can not begin trial we will pursue the other option of Avastin and Lilustim (sp?). This is a promising option and also received phone call from Duke today. They said to fight insurance and get in trial ( they even offered to contact 60 min) and that we are in good hands at MD Anderson. That the trial is a good option because David does not have significant side effects currently . When we do experience those then Avastin with a complimentary drug is promising.

So now we wait till Monday. I believe with all my heart God is trying to give that clarity that we are asking for. When it comes Monday, we have two promising options , both confirmed by duke and Md Anderson. the one we take depends on if we have insurance approval or not. Insurance will cover the Avastin route. I think we will have our clarity.

I am very disappointed in what we went through this afternoon and hope we can be a voice to others that may have to deal with this side of insurance. I am not done fighting or having a voice for this cause.

Who knows, maybe you will see me on 60 min one day:)