Dante’s Tenth Circle of Hell: Prior Authorizations
If you know, you know. If you don’t, please do not stop reading. You may not yet have been affected by this form of torture by paperwork, but some day, you or your children or your grandchildren may be. I will be very honest: just the phrase “prior authorization” (PA) now makes me a little nauseated. It reminds me of Dante’s Inferno, as if PAs are my own personal 10th Circle of Hell: torture by relentless paperwork. It is one of the most cumbersome processes in the American healthcare system, and if you have a chronic or rare disease, the odds are that you have been tormented by a PA at least a time or two. If you are really lucky, this is a semi-regular occurrence.
For those of you that don’t know what a PA is, it is a process in which your doctor has decided that they need to do a certain test or prescribe a certain medication, but your insurance requires a paper pusher to decide whether the person with the medical degree and numerous years of specialized training is correct. It is as ridiculous as it sounds. Some things, like an MRI on an injured knee, will likely get approved without you knowing that this process ever really took place. Other things, like a very expensive infusion that needs to be administered on a regular basis, may take months of appeals and every ounce of your sanity to get approved.
Picture it: you are sitting in your doctor’s office right after getting diagnosed with the disease that has been rattling you for years, but hey, there’s a treatment that exists to manage your disease over time. Your doctor obviously feels that this is the best course of action for you. It’s not a cure, but cool, you want to do whatever gives you the best quality of life. You are thinking that when you agree, that means automatically that you’ll start on this treatment within a week or so…right? HA. Insert PA process here (aka the Tenth Circle of Hell).
If your treatment or surgery or whatever is very expensive (like mine is), you may get a denial the first time around after your doctor submits the PA request. If it is expensive AND a regularly recurring cost, I can almost guarantee you will have to fight a denial. You may even have to fight this process every year when it’s time to renew that prescription or every time your health insurance plan changes. I had 3 denials for just this one medication/one PA request over the course of 2 months or so, and one of those denial letters said that I should “experience a severe or life-threatening infection” before they would considering approving my infusions. Keep in mind that the whole point of the infusions is to prevent severe or life-threatening infections. My approval process required the assistance of my doctor, the specialty pharmacy, a friend who happens to be a case manager, myself, a senator, and the state’s Department of Insurance. I won’t even say that my case was an extreme example though. I just knew how to catch the attention of the right people to push things along faster when the process became unmanageable. Another friend with the same diagnosis as me fought appeals for roughly a year before getting approval for a similar line of treatment. I won’t get into all the technical details of the appeals themselves, but I will say that it was a very large source of frustration and stress, in addition to the usual stress that my disease itself was causing. It delayed my treatment, meaning more months living on antibiotics for a nagging infection that my body wasn’t able to clear on its own and more days of work missed for being ill.
BUT HERE’S THE (somewhat) GOOD NEWS ABOUT PAs:
A Government Accountability Office report in 2011 estimated that roughly 50% of denials that are appealed will eventually be overturned, especially if your appeal reaches the stage of an external review, meaning that someone outside your insurance company is reviewing your appeal. The moral of the story? The odds are (somewhat) in your favor to keep appealing. Don’t get discouraged, especially if your doctor says that this line of treatment is the true standard of care for your condition. Be sure to have a good doctor by your side, and keep a full bottle of Tylenol handy for the inevitable headaches of jumping through all the hoops.
Just don’t give up, and try to stay focused on how this will eventually benefit your overall wellness. If you get overwhelmed, find someone who can help you understand and navigate the process - a case manager, a health insurance agent, etc. Take a break from going cross-eyed while looking at paperwork when you need it, and do something that helps to ease your stress.
If you were previously unaware of the form of torture known as prior authorizations and are still reading:
I ask you to look at ways that you can help advocate for the chronic illness and rare disease community in your state and on a federal level. This is just one way that our access to care is impeded; it delays proper treatment and puts a heavy burden on patients and healthcare providers. It also disproportionately withholds care from those who lack the educational background or resources to navigate this process and understand what rights they have in an appeal. Furthermore, healthcare providers spend numerous hours of their time and their staff’s time each week filing paperwork and appeals for PAs and repeatedly trying to explain the logic and research behind their line of treatment. This takes away precious time that they could otherwise use to spend more time with patients or to engage in continuing education programs to better care for their patients.
It is very difficult to try to convince people to care about anything when they are not directly affected, but I guarantee you that a cumbersome and lengthy appeals process likely affects several people that you know personally, along with every physician/physician assistant/nurse practitioner that you see. They may not talk openly about it, but when they do, listen carefully to what they have to say. Show them you care by doing some research and finding ways to advocate for better and more streamlined prior authorization standards in your home state. Your healthcare providers will thank you for it, and your chronic illness community needs it.
Chronically yours,
Jen
