By Joan Chang, Senior Attorney, Community Legal Aid SoCal Health Unit

My client is a nine-year-old child, Jackie (fictitious name), who suffers from Periodic Fever syndrome, a rare genetic disorder. Jackie was covered under her parent’s Anthem Insurance employer plan and came to us for assistance when she was denied critical further genetic testing by the insurance company.

Initially, CLA SoCal drafted a request to Jackie’s geneticist requesting for the doctor to address Anthem’s guidelines on genetic testing; however, the doctor refused to get involved. Thus, we filed an Independent Medical Request (IMR) with the California Department of Managed Care (DMHC) and argued the following:

  • Anthem alleged Jackie is not at risk to have a “gene change for a serious medical disorder.”  We stated that this is simply untrue. She suffers from Periodic Fever Syndrome, which is a genetic disorder that has caused serious impairment causing chronic school absences and serious episodes of recurrent pain, ulcers, and rashes since age three. We pointed out that though Jackie had initial genetic testing, it was medically recommended to obtain additional testing for her and her parents in order to get a complete diagnostic evaluation. We also noted that the geneticist and Jackie’s pediatric immunologist confirmed the medical necessity.
  • We performed extensive research of prior DMHC IMR decisions and found support for genetic sequencing. Such genetic testing may help distinguish between other diagnoses, and genetic sequencing is likely to be more efficacious than standard methods of evaluating Jackie’s periodic fever syndrome.
  • Lastly, we performed extensive medical research of recent clinical studies demonstrating genetic testing can prevent “irreversible complications” such as organ damage from Periodic Fever Syndrome

Ultimately, the DMHC IMR agreed with our analysis and found the genetic testing medically necessary, overturning Anthem’s prior denial. Anthem then authorized the testing and sent us letters to confirm.

CLA SoCal’s advocacy removed the barriers to genetic testing that will better inform Jackie’s future treatment and hopefully improve her quality of life.

Jackie’s mother expressed her gratitude and relief when I notified her about the outcome. Both she and Jackie stopped by the office and delivered a beautiful orchid potted plant along with a card in which she wrote, “Thank you for helping me grow.“; “You are a breath of fresh air!  I finally feel like I can breathe knowing I have you in my corner. Thanks for helping me fight the fight so I can focus and comfort my kids when they need me.“; and “Thank you a million-trillion times over!“.