Until I hung up the phone with Aetna, our insurance company, I didn’t think there was anything worth blogging about this week. But now I’m ALL FIRED UP.  Aetna has refused to refill my daughter Samantha’s prescription for Trulicity—even though the company filled it without a whimper (or pre-authorization) for an ENTIRE year.  Samantha—like many individuals on the autism spectrum—has struggled with weight gain as a side-effect from other drugs taken for anxiety and mood control.  Our daughter cannot take the drugs specifically designed for weight control because they interfere with her brain chemistry.  One of them caused a mini-breakdown and the arrival of a police car and an ambulance.  The break-down (about two years ago) required two other drugs to stabilize her, and these drugs caused her to regain all of the weight she’d lost, plus more and resulted in her cholesterol rising to 295!

Infographic on high cholesterol as a risk factor for heart disease.

Thanks to the creativity of an endocrinologist prescribing an off-label use of Trulicity—a diabetes drug—and Samantha’s enormous effort, she managed to lose over 25 pounds and substantially reduce her cholesterol.  But the last 10 -15 pounds have not come off and her weight is creeping up again, thanks to the holidays, her birthday celebrations and winter. As of January, Aetna abruptly changed the criteria for approving Trulicity prescriptions, limiting them to ONLY a diabetes diagnosis. No more off-label uses (AND no advanced warning to doctors or patients). I guess they thought Samantha would go off the drug cold turkey?  Or more likely, they gave the issue no thought at all. I can’t help but wonder how the robotic bureaucrats at Aetna who deny coverage of a hard-to-find effective drug would feel if their own child with autism became steadily more obese and unhealthy with each passing year.Our family pays top dollar for our Aetna “managed choice – open access” health insurance. (My heart goes out to all of the families with worse health care or none at all).  Still, we cannot afford to pay out of pocket for all of our family’s required drugs, which include off-label use of certain medications.  Back to our current nightmare.  I have tried three times to fill Trulicity in a race against the clock so she could continue taking it this week.  My efforts included calls to CVS, Aetna, the endocrinologist and the HR department at my husband’s law firm.  After two attempts at applying for pre-authorization, I received the following phone call from an Aetna representative:

“Hi, I’m trying to reach Samantha Elisofon? Are you Samantha?”

“No, I’m her mom, but I oversee all of her medical issues.  She’s a young woman on the autism spectrum,” I explain.

“Well, I really shouldn’t be talking to you since your daughter is over 21, but—”

“Samantha has signed HIPAA waivers with all of her doctors,” I interrupt. “What is it she needs to know?”

Pregnant pause. “Okay, I guess it’s okay to tell you that Aetna is turning down her appeal for Trulicity. She doesn’t have diabetes, so she doesn’t meet the criteria.”

My blood is boiling. “Good thing you’re talking to me and not Samantha,” I speak my thoughts aloud, “because she wouldn’t understand and would totally melt down. How can you deny her a drug she has been prescribed by her doctor and which you have approved for over a year? Trulicity is the only medication she has been able to tolerate that’s effective for her.”

“I’m sorry, Aetna’s policy as of January 1 … (blah, blah, blah). Not my decision…”

I’m trying not to lose my temper (but failing completely). The Aetna representative drones on about policy changes.  Outraged, I explain the idiocy AND absurdity of denying drugs to people who need them; I explain that this new policy will cost everyone more money, pain and suffering in the long run. How will it be profitable for Aetna to deny Samantha Trulicity, and then pay for her cholesterol drugs and other medications years from now when she develops illnesses associated with obesity (such as diabetes)?

“Ma’am, I’m just paid to make the phone call. You can always file another appeal.” She speaks in the infuriatingly neutral tone of a bored waitress suggesting a Cobb salad instead of Caesar.

“I realize you’re the messenger, but frankly, you sound like a robot. Do you understand that you are telling a mother who has struggled with her daughter on the autism spectrum for 27 years that you will not pay for a medication she needs?  Maybe someday you’ll be denied a  drug that helps someone you love, and then you’ll know how I feel.” I hasten to add, “Not that I’m wishing you a child with autism.”

“Actually, I do have a child with autism.” Again, the Cobb salad voice!

For once in my life, I’m almost (but not quite) rendered speechless. “Wow! I can’t imagine being paid to spend your days denying other autism moms the drugs they need for their children—without expressing ANY compassion or regret.”

Then we said goodbye.  But that’s not the end of my medication search—only the beginning. I have some Trulicity samples from the doctor to tide us over until we figure out a new game plan.

During that time, perhaps we can gather the necessary evidence and intelligent medical professionals to convince Aetna to approve Trulicity for Samantha.  Otherwise, why are we PAYING Aetna for “managed choice” and “open access,” if necessary drugs are denied because of “new criteria?”autism (!) Denying off-label drugs to patients with autism is not only discriminatory, but also kicks the can down the road.  What Aetna doesn’t pay for now, it will pay for later. Trust me on that.