Cover last hope FDA approved cancer medication for 8 year old with Ependymoma!
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I've started this petition for my friends Robin and Greg Hoyt and their sweet daughter Campbell from Bernardsville, NJ. Please read their story below!
We have found ourselves in the middle of a major problem with Campbell's health insurance. Greg and I are grasping at straws and in our brainstorming ways to get Cam the medication she needs, we thought of reaching out to the news. Of course, you came to mind.
Here's the situation: Campbell has had major disease progression. There is no known cure for multiply recurrent anaplastic ependymoma, what Campbell has. When Cam first recurred in 2011, we were thrust into unchartered waters. Since then, we have tried a total of five clinical trials, one multiple drug protocol, one experimental usage of a drug based on research being done at St. Jude, and one compassionate usage of an adult medication. We have tried all clinical trials available to Campbell. Only one worked for about 11 months. The others have failed miserably, with massive growth in her brain tumors. This year alone, Campbell has tried three other treatments, without luck. She has now had a total of nine major brain surgeries and one spine surgery. We have had full gene sequencing done on all of her tumors ever removed, to help guide treatment choices. We have one last protocol available to try to kill Campbell's cancer. This protocol has not been arbitrarily chosen. Sick Kids hospital in Toronto, Canada, a premier center for ependymoma treatment and research, found that these two drugs when sprinkled on posterior fossa primary ependymoma cells (what Cam's are) in a lab, had a remarkable death rate. This rate was increased when the two drugs were used in combination. I am not being melodramatic when I say, this is our last hope. Cam's tumors are growing rapidly, including one that has now infiltrated her brain stem, rendering it inoperable. Both of these drugs are FDA approved for use in children. Azacitadine, an IV chemotherapy, has been approved by Anthem Blue Cross, our insurance company. The second agent, Vorinostat, an oral chemotherapy, has been denied. The reason given is that it is not FDA approved for treatment of ependymoma. Here's the catch - nothing is. There is no known effective chemotherapy for ependymoma. Using that argument, they would be denying all non-clinical trial treatments, which they have not until now! It is ludicrous! Not only do we have the Sick Kids research data, and also two other patients who have successfully used this therapy for disease stabilization, but we have Campbell's gene sequencing. This sequencing provides extra evidence that this two drug combo is a good choice for Campbell. Good is almost irrelevant. It is her only choice at this point; that or death.
By not allowing her take this medication, Anthem is giving Campbell a death sentence. We do not have time to waste on the lengthy appeals process, which can take months. She is declining rapidly. Campbell is supposed to start this oral chemotherapy tomorrow. We need your help to put pressure on Anthem Blue Cross to approve Zolinza for Campbell so she can start treatment tomorrow, 7/16/14.
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