Being an Advocate
As parents, one of our roles is to advocate for our children because they cannot yet advocate for themselves. I know I don't always do a great job advocating for myself, but in many ways it is easier to advocate for Lil' Bit. Parents often put their children's need before their own, which makes doing for a children what we can't, don't, or won't do for ourselves much easier. Although we have already had lots of experience with this particular lesson given Lil' Bit's condition, we recently got an extra dose as I dealt with healthcare stupidity once again.
As you may recall, Lil' Bit takes several medications for her condition. One of these medications is taken four times a day. A few months back, we received a letter from the company that provides our prescription coverage, we'll call them RxCo, indicating that they were reducing the amount of medication that was automatically authorized to a total of 90 pills per month. Basic math tells me that 4 times a day over 30 days is 120 pills. Therefore, I needed her doctor to call and get special authorization to keep getting Lil' Bit's meds. I contacted Dr. S's office and spoke with Nurse M, who asked me to send her the letter, which I did. She left me a message a few days later to let me know she had contacted RxCo and gotten everything taken care of and to call her if anything came up. The date for the change came and went and I heard nothing. Everything seemed to be running smoothly.
Jumping forwarda few months, it came time to reorder Lil' Bit's meds. I called RxCo's affiliated company, we'll call them AffCo, from whom we always reorder the meds. Everything was copacetic. They had active and current prescriptions, asked me how much we had left on hand, and scheduled delivery roughly 5 days before she would run out. The date the meds were supposed to arrive, they did not. We had a message from AffCo saying that her shipment had been "delayed" and to give them a call. So, I called. You can imagine my shock and horror as the woman on the line told me that they were waiting on an authorization for the meds. As far as I knew, this had been taken care of back in April. And more important, why the heck didn't they tell me this when I placed the reorder, rather than waiting until the day it was supposed to ship! She kept asking me if there had been a change in her dose and I said, no, she's taken the same dose since November. I indicated that I knew RxCo had changed its authorization plan, but that the doctor's office had already taken care of that. Well, she didn't know. She could only tell me that they didn't have what they needed to send the meds. There was no point arguing with her, so I asked
her again what they needed that they didn't have--a pre-authorization, she
said.
So, after hanging up with AffCo, I contacted Nurse M. She told me that both she and the doctors had contacted RxCo no fewer than 4 times and each time had been assured that it had everything it needed, but somehow the problem persisted. I told her I was being told that there was still no authorization for the meds and indicated that Lil' Bit was running out. She promised to call RxCo--again--to see what she could do. I texted Phil with our predicament and, having done all I could, proceeded to breakdown in tears of frustration. I felt like a failure. It was my job to make sure this didn't happen and I had failed. Yes, I knew there was nothing more I could do at that moment but wait. I even knew that there was nothing more I could have done to prevent it. I had, in fact, done everything in my power to prevent this very thing from happening, but it hadn't worked. None of this stopped me from feeling like a failure, however, and I struggled not to eat a gallon of ice cream to make myself feel better while I waited.
Soon thereafter, I got a call back from Nurse M. She had talked to someone at RxCo--had their name and number--and had been assured that the authorization was now processed. She gave me a number they had given her to have me call to call to see if the meds could be expedited now that the authorization was received. I immediately called the number. This is when my trip down the rabbit hole began in earnest. Let's refresh: the letter limiting medication authorization and to whom Nurse M had been required to speak was the primary company, RxCo. The company that actually processed Lil' Bit's orders and indicated that it did not have an authorization was the affiliated company AffCo. However, even within AffCo, I was required to deal with a specialty group for Lil' Bit's condition. We'll call it SpecGrp. So, Nurse M has just spoken with someone at RxCo and gotten authorization. She called me back and gave me a toll-free number for RxCo to call and see if they can expedite the meds. I called RxCo. I explained to the woman who answered why I was calling and she told me she couldn't help me and had to transfer me to AffCo. The woman at AffCo began to help me, but once I name Lil' Bit's medication, she told me she had to transfer me to SpecGrp. The SpecGrp woman then looked in the system and said they still had no authorization. I explained that Nurse M has just been assured that we had it. Well, she said, that's RxCo. Although they are "the same company," AffCo and RxCo use different systems, so they had to wait for it to show up in AffCo's system before they would process it, which may not be for a few hours. She would, however, "red-flag" it so that as soon as the authorization came in, it would be worked on right away. Nevertheless, because it was already 4:00 p.m. on a Friday, it would likely not go out until Monday. I asked her to also "flag" it to have someone call me on Monday if, for some reason, there was no authorization, so I could track down what was going on. She assured me that she would. Again, there was nothing left for me to do but wait.
Saturday brought a glimmer of hope. I received an automated call from RxCo indicating that they had received an authorization for the medication that was good for a year. Yay! I thought that maybe things were finally working. Sadly, they were not.
Monday rolled around and I heard nothing. Still, I was anxious because of how close we were to running out, so I wanted to just confirm that things were moving along to give myself peace of mind. I call AffCo's SpecGrp. I explained to the woman what had occurred on Friday and that I was simply trying to determine if the meds had shipped Friday or were on track to ship that day. She looked in her system and said that there was no authorization and I needed to talk to RxCo, but that she would transfer me. She transferred me to another woman. I explained my whole story, again, after which the woman, sounding quite confused, said that I was talking with AffCo. I explained to her why I thought I was talking with RxCo--because the previous woman told me she had transferred me there. This woman looked in her system and said she saw an authorization so she didn't know what the problem was. I said, well, the other lady said it wasn't there. The new woman put me on hold to contact the pre-authorization department and try and figure out what was going on. After about 5 minutes, she got back on the line. She apologized for the wait and was beginning to explain something when she suddenly said, "There it is!" Whatever she and pre-authorization had done had finally made the authorization show up in AffCo's system. She exited the system and went back in to double-check. The authorization was still there and the meds finally said they were "ready to ship." She then had to transfer me to the shipping people with SpecGrp so they could re-ask me all the questions they had already asked when I initially requested the reorder. When the woman asked how many pills I had left and I told her "10," she said, "So, you'll need this tomorrow then." It was not a question. [God bless her!] We got everything squared away and, magically, they arrived the next day from the shipper. Crisis averted! [I had told Phil that if Wednesday had rolled around and there were no meds, I was taking my child to the hospital and checking her in so she could get the meds she needed. That would have crimped the savings insurance was trying to reap for sure!]
I am amazingly grateful to Nurse M and the final two woman I spoke with at AffCo and SpecGrp who actually took the time to figure out what was going on and make things happen. But there were certainly many other people I dealt with who simply passed me off as someone else's problem. And how much worse would things have been if I had relied on the fact that I didn't get a call to mean that things were processing? This whole situation made me even more angry because I know that there are people who don't have the time or wherewithal to deal with all this garbage and probably get lost in the system and don't get their meds or whatever healthcare they need. I am more convinced than ever that we, as a society, do not value human life. If we did, we would not make access to healthcare so difficult. The fact that it's difficult even for those with insurance means that the system is broken. Don't try and tell me healthcare isn't already being rationed. I'm watching it happen.
I know my job is to advocate for my child, but the healthcare system should not be working against me. But I can neither fix it, nor bypass it. Lil' Bit's condition means that I must deal with it on a monthly, if no weekly, basis. I can, however, choose providers who will help fight the fight with me--like Dr. S and Nurse M. And I can spend all the time and energy I have until I get what I need for my child. And I will do it with every breath in my body. I may get angry and frustrated and cry. And I will do my best not to yell at those who have no control over what is going on. But, ultimately, you better get the heck out of my way, because I will get it done. I am Lil' Bit's advocate. It is my number one job. You have been warned.
So, after hanging up with AffCo, I contacted Nurse M. She told me that both she and the doctors had contacted RxCo no fewer than 4 times and each time had been assured that it had everything it needed, but somehow the problem persisted. I told her I was being told that there was still no authorization for the meds and indicated that Lil' Bit was running out. She promised to call RxCo--again--to see what she could do. I texted Phil with our predicament and, having done all I could, proceeded to breakdown in tears of frustration. I felt like a failure. It was my job to make sure this didn't happen and I had failed. Yes, I knew there was nothing more I could do at that moment but wait. I even knew that there was nothing more I could have done to prevent it. I had, in fact, done everything in my power to prevent this very thing from happening, but it hadn't worked. None of this stopped me from feeling like a failure, however, and I struggled not to eat a gallon of ice cream to make myself feel better while I waited.
Soon thereafter, I got a call back from Nurse M. She had talked to someone at RxCo--had their name and number--and had been assured that the authorization was now processed. She gave me a number they had given her to have me call to call to see if the meds could be expedited now that the authorization was received. I immediately called the number. This is when my trip down the rabbit hole began in earnest. Let's refresh: the letter limiting medication authorization and to whom Nurse M had been required to speak was the primary company, RxCo. The company that actually processed Lil' Bit's orders and indicated that it did not have an authorization was the affiliated company AffCo. However, even within AffCo, I was required to deal with a specialty group for Lil' Bit's condition. We'll call it SpecGrp. So, Nurse M has just spoken with someone at RxCo and gotten authorization. She called me back and gave me a toll-free number for RxCo to call and see if they can expedite the meds. I called RxCo. I explained to the woman who answered why I was calling and she told me she couldn't help me and had to transfer me to AffCo. The woman at AffCo began to help me, but once I name Lil' Bit's medication, she told me she had to transfer me to SpecGrp. The SpecGrp woman then looked in the system and said they still had no authorization. I explained that Nurse M has just been assured that we had it. Well, she said, that's RxCo. Although they are "the same company," AffCo and RxCo use different systems, so they had to wait for it to show up in AffCo's system before they would process it, which may not be for a few hours. She would, however, "red-flag" it so that as soon as the authorization came in, it would be worked on right away. Nevertheless, because it was already 4:00 p.m. on a Friday, it would likely not go out until Monday. I asked her to also "flag" it to have someone call me on Monday if, for some reason, there was no authorization, so I could track down what was going on. She assured me that she would. Again, there was nothing left for me to do but wait.
Saturday brought a glimmer of hope. I received an automated call from RxCo indicating that they had received an authorization for the medication that was good for a year. Yay! I thought that maybe things were finally working. Sadly, they were not.
Monday rolled around and I heard nothing. Still, I was anxious because of how close we were to running out, so I wanted to just confirm that things were moving along to give myself peace of mind. I call AffCo's SpecGrp. I explained to the woman what had occurred on Friday and that I was simply trying to determine if the meds had shipped Friday or were on track to ship that day. She looked in her system and said that there was no authorization and I needed to talk to RxCo, but that she would transfer me. She transferred me to another woman. I explained my whole story, again, after which the woman, sounding quite confused, said that I was talking with AffCo. I explained to her why I thought I was talking with RxCo--because the previous woman told me she had transferred me there. This woman looked in her system and said she saw an authorization so she didn't know what the problem was. I said, well, the other lady said it wasn't there. The new woman put me on hold to contact the pre-authorization department and try and figure out what was going on. After about 5 minutes, she got back on the line. She apologized for the wait and was beginning to explain something when she suddenly said, "There it is!" Whatever she and pre-authorization had done had finally made the authorization show up in AffCo's system. She exited the system and went back in to double-check. The authorization was still there and the meds finally said they were "ready to ship." She then had to transfer me to the shipping people with SpecGrp so they could re-ask me all the questions they had already asked when I initially requested the reorder. When the woman asked how many pills I had left and I told her "10," she said, "So, you'll need this tomorrow then." It was not a question. [God bless her!] We got everything squared away and, magically, they arrived the next day from the shipper. Crisis averted! [I had told Phil that if Wednesday had rolled around and there were no meds, I was taking my child to the hospital and checking her in so she could get the meds she needed. That would have crimped the savings insurance was trying to reap for sure!]
I am amazingly grateful to Nurse M and the final two woman I spoke with at AffCo and SpecGrp who actually took the time to figure out what was going on and make things happen. But there were certainly many other people I dealt with who simply passed me off as someone else's problem. And how much worse would things have been if I had relied on the fact that I didn't get a call to mean that things were processing? This whole situation made me even more angry because I know that there are people who don't have the time or wherewithal to deal with all this garbage and probably get lost in the system and don't get their meds or whatever healthcare they need. I am more convinced than ever that we, as a society, do not value human life. If we did, we would not make access to healthcare so difficult. The fact that it's difficult even for those with insurance means that the system is broken. Don't try and tell me healthcare isn't already being rationed. I'm watching it happen.
I know my job is to advocate for my child, but the healthcare system should not be working against me. But I can neither fix it, nor bypass it. Lil' Bit's condition means that I must deal with it on a monthly, if no weekly, basis. I can, however, choose providers who will help fight the fight with me--like Dr. S and Nurse M. And I can spend all the time and energy I have until I get what I need for my child. And I will do it with every breath in my body. I may get angry and frustrated and cry. And I will do my best not to yell at those who have no control over what is going on. But, ultimately, you better get the heck out of my way, because I will get it done. I am Lil' Bit's advocate. It is my number one job. You have been warned.