Customer Service

I talk to the great Customer Service Reps of my insurance company frequently. In fact, for the past few months I've spoken with them at least weekly, sometimes two to three times a week. But this week----well- this week, I have spoken with them  daily; sometimes multiple times per day. I want to clarify that when I say "great" it is not with tongue in cheek. The reps don't make the policies. The reps actually identify with a customer receiving bills of thousands of dollars from  providers after the insurance company initially denies to pay the claim.

This week:

We've been sitting on a $12,000 bill from a lab that ran tests ordered during one of  Michael's June hospital stays. When I inquired about why the insurer hadn't paid the bill I was told by Customer Service that the lab was "out of network". I reasoned out loud that we were in a network hospital of the insurance company when the spinal fluid was drawn and why on earth should we be penalized because the hospital's lab doesn't do said test. The Customer Service Rep (Mary) called me this week to assure me she is still working on this (it's been two weeks).Apparently the lab that sent us the $12,000 bill needs someone at the hospital lab to tell them to bill the hospital. Of course. I get it. The hospital pays the provider lab $12,000 then includes that cost (or more) as part of the hospital bill. The hospital will get paid. The out-of-network provider gets paid and the nice Customer Service Reps at the insurance company seem as outraged as I am by the amount of money billed to run 5 tests.

Another bill. This for three ambulance rides- just over $6400. It took the Customer Service Rep about an hour to sort through this one. Ambulance rides have a co-pay of $200. We're responsible for that-all ten rides. We're also responsible for what the ambulance company charged the insurance company beyond what the insurance company agrees to pay the non-contracted provider, in this case, the service that the SD Fire Department utilizes in response to 911 calls. We have no control, but we'll be paying the close to $400 not covered by our insurance for each ride. We're not going to go broke----but many could. I'm distressed once again by the shocking cost of getting to an emergency room seven minutes away---$2000 plus per ride. The Customer Service Reps are a bit astonished by the amount billed as well. What, I wonder, is the actual cost?

Barry called me the other day from CVS. He said, "they're saying the Felbatol will cost $2014-the insurance is denying payment". This one took several Customer Service calls, a preauthorization from the MD and numerous calls between the insurer and the pharmacy. I also needed to update the hospital system's registration as Michael is newly on Medicare with a supplemental prescription program from what is now his secondary insurer. (Note: this typing was interrupted by a call from the prescription drug plan leaving an automated message for Michael. Once his identity was ensured, an automated caller told us " the prior authorization request is approved for Felbatol"). Okay. Our co-pay will now be $3.60 per refill order once a month. Again I wonder, how does a drug that's been around for twenty-plus years command that kind of payment from the insurer? Their R&D money has long since be recovered. They just keep jacking up the price. And the insurance company keeps paying it.

I am truly grateful for the extraordinary medical care Michael has received during this hellish year but I have concerns that go beyond our frustration to get to the bottom of why Michael's epilepsy has spun exponentially out of control.

I am concerned that drug companies are charging ridiculous amounts for epilepsy drugs that have been around for over two decades.  I wonder as above, what those ambulance rides really cost to get my severely compromised, seizing son to the emergency room. I can only imagine the  charges billed for the in-patient stays. I'm pretty sure when I have a moment that I'm not dealing with Customer Service Reps, out-of-network providers, the remaining tests Michael is scheduled for and a little income producing work, that I just may ask to see an itemized bill or two. That should make for an interesting blog or ten!

Hanging on

I want to hang on to hope. I really do. We had a pretty good week---four evenings with no seizures whatever, one with three and another with seven. Then...Monday night. Twenty-plus seizures requiring a significant amount of Ativan to slow things down. It did.

Barry, Meaghan and I were running around to get the medication, the water, note the time of the seizures and wait for the moment of clarity in-between to give Michael the Ativan. Meaghan was muttering "PTSD" under her breath. She's right. The falls, the emergency calls, the ICUs, the intubation, the realization that no matter what we have done, we have been unable to stop so many seizure episodes during  this most heinous year. Yes, we are traumatized. I can hear it  in my voice, see it in their eyes. We are scared, we are scarred. We simply haven't had the time to regroup after one disaster before another occurs.

Most recently, we've had an eight week break from ambulances, ERs and hospitalizations. That's good and I'm grateful. But the dynamics around the kitchen table each evening illustrate the fragility of our psyches. Every dropped utensil, quick movement, bent head or even a throaty, hearty laugh results in high alert mode. When we realize it's not a seizure, conversation resumes but the fight or flight feeling lingers. It lingers and hangs over us, a storm cloud taunting above our heads.

We're a pretty tough group. We really are. We've learned a lot from Michael. He has persevered in so many situations, with so many obstacles. He remains hopeful, even adamant, that he will overcome this setback year as well.  And so....we too are hopeful. Always, all days-there is hope.