Patients and Physicians Speak Out

I was diagnosed with Crohn's Disease. The medicine my doctor prescribed required prior authorization. While waiting for the appeal, my colon perforated. I received my approval letter the day I had emergency surgery to remove my colon.

I have narcolepsy. There is no cure, but there is a medication that lets me live a normal life if I follow its precise schedule. It is the only medication of its kind, because of patents, and it costs thousands of dollars for a week's worth of medication, because there is no generic competition. I am forced to get this medication through insurance, or I would quickly go into debt just trying to stay awake and have a normal day. I have recently switched insurances. There will be a four-month gap between when I lost my old insurance, and when I will be able to see a new sleep doctor to re-prescribe the same medication. Then there will be extra delays as prior authorization decides if I am allowed to have the medication necessary to let me drive safely, hold a job, and experience life without constant debilitation.

I have been rationing my sleep medication, hoping to make it to the sleep doctor before it runs out. I am actively sabotaging my own health, hoping the system deigns me worthy to continue receiving care in a relatively timely manner, before I am non-functional. But soon I will be forced to switch insurances again--meaning a doctor visit, and a re-prescription, could be even further away, and my health may deteriorate further as I wait. Every day I do not take my medication, is a day I do not get restful sleep. After two weeks of not taking my full dose of medication, I would be unable to drive safely or perform at work. American healthcare, and prior authorizations, are forcing me to either go into debt, or put my safety and my job at risk.

The need for prior authorizations has caused me damage to my brain that I may never get back. I have multiple sclerosis, a lifelong illness, and my insurance company thinks they know what is best for me. WRONG! In 2015, my doctor wanted me on a medication called Gilenya, a [prior authorization] was sent to the insurance company and came back with a denial. Why? They wanted me to fail THREE medications of their choice before they would cover what my doctor said was best for me. I tried two of the three which led to terrible side effects and an allergy to one of them. Most of all it led to more lesions on my brain. In 2018, the need for a prior authorization for additional rounds of my current treatment led to 2 denials and a relapse during that time, again more damage that I may never recover from. I was told a board-certified neurologist would look at my appeal, I doubt they did. It wasn’t until I went to Facebook and posted on the insurance company’s page that I got momentum in the right direction. I was fed up with the process so on a post with the chief medical officer, I kindly asked if he could review my case. Less than 48 hours later my treatment was approved. It shouldn’t ever come to that. Insurance companies don’t know what’s best for a patient.

I use Dexcom G6 constant glucose monitor for controlling post pancreatectomy diabetes (I have half a pancreas). Getting sensor and transmitter refills for the G6 system is challenged each time by the supplier, Medicare and my secondary insurance. If I use the DME supplier, they request prior authorization, and sometimes refuse to send supplies out of schedule when I need them before traveling overseas. They shave the timing so close that often supplies are delivered late. If I pay cash out-of-pocket to get supplies more timely from the pharmacy it may take about 3 months to get $1,258 reimbursement and 2 to 3 hours of phone calls and emails with the pharmacy, Medicare, and [my health insurance] to get 3-months’ supply of sensors. [Prior authorization] is an unnerving, time-consuming process to be endured for the sake of keeping my diabetes in control and not becoming an even greater burden to the insurance companies as a result of secondary complications that result when the disease is not controlled. This does not make sense.

We used to have good healthcare, years ago, when [prior] authorization didn't interfere with the doctor’s wisdom and compassion. Where is our healthcare now?

I have respiratory issues and got the flu last year. It took insurance 3 weeks to approve Tamiflu for me. I never even got to use it, but I had 2 ER trips for breathing treatments.