July 16, 2014 at 6:19 AM
BERNARDSVILLE, NJ - Campbell (Cam) Hoyt has been battling Ependymoma, brain and spine cancer, since Aug. 20, 2009. She was just 3 years old when she was diagnosed.
In the last few weeks, Campbell has had major disease progression. There is no known cure for multiple recurrent anaplastic ependymoma.
But there is one possibility to try to cure Campbell's cancer. However, it is costly and the Hoyt's insurance carrier has denied coverage. Friends of the Hoyts have set up two ways to help--a petition to the insurance company and a donation website.
Since Cam's recurrence in 2011, she has 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. They 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 treatments, without luck. She has now had a total of nine major brain surgeries and one spine surgery. Full gene sequencing has been done on all of her tumors that were removed, to help guide treatment choices.
On the website, the Hoyt's say,"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 PF 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. The second agent, Vorinostat (also known as Zolinza or SAHA), is 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.
Not only do they have the Sick Kids research data, and also two other patients who have successfully used this therapy for disease stabilization, but they have Campbell's gene sequencing. This sequencing provides extra evidence that the two drug combination is a good choice for Campbell.
Good is almost irrelevant. It is her only choice at this point; that or death.
They do not have time to waste on the lengthy appeals process, which can take months. Cam is declining rapidly and is supposed to start the oral chemotherapy this week. The cost of the medication out of pocket is $5,000 per month. $10,000 is needed to cover the first two cycles of medication and then Campbell will have scans to determine if the medications are working.
To help by donating go to:
To sign the petition to help to put pressure on Anthem Blue Cross to approve Zolinza for Campbell so she can start treatment go to: