Medicare Nightmare for an Autism Family

My mother once said: “Growing old is not for sissies.”  Boy was she right—especially when your family gets dubious advice about selecting a Medicare plan. Bad enough to suffer arthritis, hearing loss and scary large birthdays. But the ultimate indignity in changing to one of many Medicare “supplemental” plans is signing up for the wrong one and paying even more only to learn that nothing is covered.

After multiple emails and many hours on the phone, our insurance consultant signed us up for Humana. Humana turned out to be COMPLETELY inappropriate for us (and anyone else who lives in Manhattan). Humana is called an “advantage plan”. What a misnomer!  Even doctors who told us they accept Medicare don’t accept Humana. The (dis)advantage plan ended up costing us a few thousand dollars in just two months because we were forced to pay out of pocket for just about any drug or physician we needed.  We learned the hard way—all Medicare plans are NOT created equal.

Unlike Humana, United Healthcare turned out to be the best supplemental coverage for Samantha, despite being worse than expected. The good news is two of her four prescriptions are covered. The bad news is that UHS does not cover Mounjaro (or Zepbound) despite the fact that Medicare covers Zepbound for weight loss as of July 1^st. To qualify for the drug, a patient must have a BMI of at least 27 and a co-morbid condition like diabetes or heart disease.  Samantha’s BMI is 22 and hasn’t exceeded 27 in nine years, and she is otherwise physically healthy.

After struggling with her weight since high school (due to medications), Samantha finally reached and managed to maintain her current ideal weight under 120 pounds.  Over the years, my daughter cycled through many drugs, including Saxenda, Trulicity and Ozempic, before she finally achieved success with Mounjaro and Zepbound.  At last, she stopped yo-yoing. She was able to fit into her clothes, and our family saved the money it cost to constantly purchase new clothes in different sizes. It was a wonderful, hard fought victory for Samantha. And that brings us to now.

Nowadays, everyone knows that if you go off the weight loss drugs, all of the weight will be regained.  The drug companies know this better than anyone. And yet, Samantha is not covered for maintenance because she already lost the weight. Really?! Is it fair for us to have spent thousands of dollars for our daughter to achieve a healthy weight only for the coverage to stop? Are the drug companies and government insurance really saying that successful patients must regain all of their lost weight and develop a co-morbid condition in order to qualify for coverage?

Even more frustrating is the fact that autism is not considered a co-morbid condition, although many people in the autism community are significantly overweight. Overweight people on the spectrum don’t qualify for coverage even with prior authorization from a doctor, and they can’t afford to pay $599 per month.  Our family is currently paying $350 for a compounded version of Mounjaro which is much more difficult to administer for a disabled person.  Instead of the easy one step process of injecting herself with a pen, Samantha now has a multi-step process: 1. take the syringe out of the fridge 30 minutes before using, 2. apply alcohol to the area, 3. carefully take the syringe out of its plastic package, 4. insert into the plunger, 5. tap to get rid of air bubbles, 6. push out a drop to be sure, 7. pinch the flesh where you plan to inject, and 8. give the shot.  None of these steps are daunting for a neurotypical patient, but for a person with autism, severe anxiety around needles and below average motor skills, these extra steps add to her anxiety (and mine)!

Speaking of anxiety, UHC also would not approve coverage for guanfacine, an old-line drug that has been used for many years for ADHD in and anxiety in children and which Samantha has been taking successfully for 8 years. The insurance company rejected her doctor’s pre-authorization attempt, because it’s an off-label use.  Instead UHC recommended she try heart and blood pressure drugs that her doctor says are completely inappropriate for her! Apparently, the FDA has not approved the drug for an off-label use, no matter that it was covered by private insurance and safely helped to manage her anxiety.

What will we do? Paying out of pocket for guanfacine–which fortunately is only $27 per month– is the only solution since she must continue on the drug. But what happens to all of the autistic people and their families who can’t afford these and other drugs? Most people on the autism spectrum are unemployed or under-employed. Nobody—especially in our current government—seems to care what happens to these autistic adults, dismissing them and predicting they will “never date or pay taxes.” (Horribly insulting and untrue).

Once upon a time when Samantha was born in 1990, only one in 250 babies were on the autistic spectrum. Now it’s one in 31. Tremendous numbers of children are growing up with autism.  Many of them (including Samantha) and their families are voting for government that will support their needs.

I’m hoping that over time the autistic community will grow so large and vociferous that their medical and emotional needs can no longer be dismissed or ignored.