ADELANTO – A 10-year-old Adelanto girl is fighting for her life against the Cystic Fibrosis, that has taken any chance of normalcy from her. Allissa Gabriel’s smile is infectious, making her look like a normal healthy child her age, but the medical trials she faces on a daily basis are something most adults can not fathom.
Allissa’s mother says that the one thing that can not only save her daughter’s life, but also give her a more normal life is being denied to her by their health insurance. Three doctors that treat Allissa feel that this medication being denied to her is necessary for her health.
The main reason the insurance is giving for the denial is that Allissa, who will be 11 years old on October 20th, is not yet 12 years old. Orkambi is FDA approved for children 12 and over, but children as young as 10 years of age have benefited from this drug. Mary Gabriel worries that her daughter will not make it to her 12th birthday without this medication.
Allissa’s infections are becoming resistant to all Cystic Fibrosis therapies and within days of stopping the IV therapy, she ends up back in the hospital. The insurance also says that Alissa’s lung function is not bad enough to make her a candidate for the drug. They also say that it does not cure her pancreatic deficiency, which she now has due to complications from Cystic Fibrosis.
Mary Gabriel, Alissa’s mother describes Cystic Fibrosis as a genetic condition that causes a thick sticky mucus throughout the body. The mucus traps and breeds dangerous infections that can be life threatening. This disease has taken away Allissa’s Pancreas function,has damaged her liver and severely damaged her sinus structure.
Although Allissa’s lung function is still not showing the severity needed for the insurance company to approve the medication, she is suffering from several other life-threatening conditions as a result of the Cystic Fibrosis.
So far, she has had 16 sinus surgeries, months of hospital stays and numerous infections. Gabriel says that a recent sinus infection nearly killed her when it spread to her eye socket and then to the bones in her face and skull.
“In the past 4 months she has endured more than 240 doses of home IV therapy, 29 days in the hospital, 16 port access needles in her chest, 6 surgical procedures, 3 CT scans, 2 MRIs, countless specialty doctor appointments and more than half of the school year absent (causing her to drop off of honor roll)”, said Gabriel.
The medication she needs costs about $20,000 a month, this amount sounds excessive, but her mother says if you consider all her recent care that the insurance has covered it would amount to much more. The state will allow only one appeal through the county of San Bernardino and the county does have the authority to overturn the state’s denial.
The family has went to Vertex, the company that created the drug, but they can not help until Allissa is 12 years old. The family will do anything to save the life of their child, they said if the appeal is denied, they will be forced to sell their home in order to save Allissa’s life.
Orkambi works to thin the thick infection-causing mucus causing the persistent sinus infections that is making Allissa so ill. “From the recurring sinus infections drainage, Allissa has experienced drastic decline in lung function, paralyzation of the stomach and inability to live a “normal” life. She is exhausted from simply trying to breath,” said Gabriel.
Allissa just wants to get back to rock climbing, rollerblading and school, but she needs to be freed from the constant infections caused by the Cystic Fibrosis. Allissa’s mother feels as though this drug is the only hope for her child to not only survive, but live. “We are simply asking for a three month trial for Allissa. We need to try Orkambi. We need to give her the chance that it promises,” she said.
The family has started a go fund me account in hopes of raising enough for three months of the medication. The family would appreciate any assistance from the community and also has a page called Allissa’s Fight to follow her story.