I went on a mind-boggling journey to get my son’s ADHD medication covered by insurance — twice

Last January, I went to fill my son’s ADHD prescription and was handed a bag with an unfamiliar drug name on it. No mistake, the pharmacist tech said, it was just the generic version.

I had a sinking feeling. As a former editor for diabetes publications, I knew that insurance companies regularly switched people from one brand of insulin to another, or from a name brand of insulin to a generic. I’ve heard stories from people with diabetes who said the switch completely upended their blood sugar management. However, I had used generic medicine for my blood pressure without a problem, so I hoped for the best with this switch.

The first day that my son took the generic, he was OK. The second, he was irritable. The third, he was sobbing.

His pediatrician wasn’t surprised. Before we had landed on an ADHD medication that worked, we had cycled through several others that failed spectacularly. Some children are extremely sensitive to the variations in ADHD medications, and my son was one of them. I filled his prescription for the name-brand medication with my credit card, and started the process to appeal the insurance company’s decision.

What followed was a frustrating and costly process that took a couple of months and several dozen hours on hold to straighten out. But by the time I convinced the insurance company to cover the name-brand medication, I had switched jobs and insurances, so I had to start the process over again.

The mind-boggling experience lasted a full year, but it gave me a framework for any future fights with insurance companies. Health care advocates have long argued that U.S. insurers employ a secretive and complicated process for deciding what treatments and drugs to cover, a process that too often skews toward saving insurers money over patient outcomes. And according to recent reports, that process has become more automated than in the past. For example, a 2023 ProPublica report found that Cigna created an algorithmic process that allowed a single physician to issue 60,000 denials in a month.

The only way to combat this process is to be organized and create a system that allows you to push back while maintaining your sanity. Here are some steps that worked for me:

Inertia is your enemy. I lost at least two months with my insurance appeals because of dread and procrastination. Find a way to make that first phone call or fill out that first form, and then break the process into bite-sized, daily pieces. Enlist a partner to help manage the tasks or a friend to be an accountability buddy as you push forward.

Don’t go it alone. The first call you should make is to your health care provider, who may have staff who specialize in appealing sketchy insurance decisions. The doctor’s office may directly appeal for you, or they may provide you the records to do the appeal yourself. If they appeal for you, you still need to follow up with insurance on your own. I lost several weeks waiting for the insurance company to respond to information the doctor sent, only to learn that the insurance company had “lost” the documentation. You also can enlist your employer’s human resources department or a state helpline. Pull all the levers you can because you won’t know which will work.

Know that it’s not your fault. You may find yourself feeling guilty or dumb during this process, especially when you receive a letter telling you that you filled out a form incorrectly or forgot to include a receipt. It’s not you; this process doesn’t work well for anyone.

Be organized. Case and file numbers are your friends, and this process is too complicated to rely on memory or narrative. Create a document and log each call, along with each archaic number they give you to use for the next call. In addition, if you are sending something by mail, make a copy of the information you will send, and send any correspondence with tracking information. If you pay out of pocket for the prescription and want to be reimbursed by the insurance company, they will want those colorful receipts attached to the bag at the pharmacy. (If, like a normal person, you didn’t save those, go to the pharmacy at a non-busy time and ask them to reprint it.)

Leave the emotion out of it. This was perhaps the most difficult step for me, but it’s necessary. You will be talking to a different person every time, and they likely will have very little power to change the situation. You will be tempted to blow up at them, but it will leave both you and them worse off. You absolutely have the right to be mad, but find a way to vent to loved ones or to policymakers who may be able to change the system. Leave the call center workers or pharmacy techs out of it. We are all caught up in a terrible system, and there certainly are people to blame, but you won’t be talking directly to them.

Don’t ever expect the situation to make sense. The insurance company will blame the pharmacy benefit manager, and the pharmacy benefit manager will blame the insurance company. Or no one will know what to do to help you. Or they will ask you for a form that you already sent. It will always be a jack-in-the-box of bad surprises.

My second appeal ended as absurdly as the situation had begun. They refused for weeks to pay for the name-brand medication. Then we upped the dosage, and the name-brand medication was magically covered by insurance with no explanation. When I told a friend who works at a customer service center about this seemingly random turn of events, he said, “I’m not saying we have an algorithm to give a customer what they want based on the number of times they complain, but I’m not saying we don’t.”

And finally, decide when to stop fighting. Your time and sanity both are worth something, and you get to decide how much and how long to push. If the situation is not a matter of life or death, you may have to decide when it makes sense to stop fighting. In my case, the stopping point came when I attempted to get reimbursed for my out-of-pocket expenses from before the approval magically went through. I finally was given a check for about a fourth of what I spent on the medication, with a lot of archaic language for why that amount was all I deserved. After three more hours of phone calls, I gave up. It wasn’t right or fair, but I had to move on with my life.

This is a time-consuming, and often soul-crushing, process, and it is one that wastes countless productivity hours, if my experience is any indication. It’s also profitable for insurers, as even the most dogged health care consumer may be able to recover only pennies on the dollar when a treatment or medicine is wrongfully denied. What is most sobering for me is how many parents lack the resources to even fight a wrongful decision, and how many children must endure medication that doesn’t help them manage their ADHD. The only way to stop this cycle for individual consumers is for lawmakers to create regulations that unlock the black box of denials and ensure the insurers are being sensible and humane.

Craig Idlebrook is a health care editor and a writer in Massachusetts. His work has appeared in more than 50 publications, including MIT Horizon, the Christian Science Monitor, Funny Times, and several “Chicken Soup for the Soul” anthologies.