Disclaimer: This post focuses on the difficulties I had with my insurance company recently to get treatment. And while it is easy to blame only the insurance companies for denial of coverage the drug companies are also at fault here for charging exuberant price and charging different amounts in different countries.
Many of my close friends know how frustrating this summer has been. As you can see from my last post I have been flaring since student teaching in the spring. In the past it was hard to control flares because we didn't know the underlying cause/disease and therefor the appropriate treatment. This is no longer the case. I have a diagnosis (plus) and awesome team of doctors who come up with aggressive treatment plans. Theoretically when one treatment starts working and my doctors change the treatment plan I should be able to start the new treatment and hopefully be on my way to feeling better. However when that treatment cost $10,000 or $20,000 and off label it is not that simple.
If you have been reading my blog you will know back in March the neurologist I had been seeing ordered IVIG. However it was denied and the appeal was denied. I could have seeked out external review but there was a couple reasons I did not. First off my neurologist was not super helpful in the whole thing which would have made it really difficult to win. The second issue was my rheumatologist was already trying to push Rituxan. He agreed that if he had to choose which to take IVIG was the more appealing less scary option but also used words like organ involvment and expressed there was not a ton of research in cases like mine (ironically he also thought it would be easier to get insurance approval). It gets tricky when trying to find treatments that work for Sjogren's and Behcet's (we can't treat the diseases separately because the treatments are too similar). So the week before camp started I finally agreed to Rituxan and had an appointment where I was basically going over all the ways it could kill me and I signed my life away in hopes of finally getting some control over my health.
By the following week I should have theoretically been setting up my Rituxan infusions but instead I got word that my insurance was not approving the prior authorization. Back to the appeals department we went. It seemed like everything that could have gone wrong with my appeals did. They were constantly telling my doctor and I different things. The fastest way to get a denied treatment approved is a peer to peer and I was encouraged to have my doctor call for this, However when my doctor called they told him to send a letter of medical necessity instead. Which he did yet it somehow did not make it in to the appeal file. Despite both his office sending it and the fact I physically sent in to the insurance's office to make sure they got it. I was not given a decision when I was supposed to be. In the appeals policy is clearly states 30 calendar days to receive a decision, the people in the office tried to tell me it was actually 30 business days. In the end the appeal was denied claiming Rituxan was still experimental in Sjogren's, despite more than the required 2 studies and the treatment being part of the Sjogren's Syndrome treatment guidelines that came out this year.
The final option in an external review, which while I decided against it for IVIG it was time to try it for Rituxan as it was my best and one of the few remaining treatment options. For an external review as the name suggests all the information both on my own medical history and the insurance policy are sent to an external review company. I received a call from the nurse handling it on the insurance company's end explaining I had 10 days to send them any additional information I would like looked at in the review process (although the process could take another 45 days). I explained I was hesitant to send the information through the insurance company due to previous mishandling. In the mail I received the contact information of the woman in charge of my case at the external review company and was able to get an email to send documents to, which was really important as waiting for the contact information already cut in to my 10 day window.
As you can imagine I had my medical records ready to go, including the letter from my rheumatologist that had been left out previously. I also am lucky as a Temple student I have access to a ton of medical databases and research studies. After spending hours reading through some I found a couple that seemed to most support the use of Rituxan in my particular case of Sjogren's and the manifestations/organ involvment I have experienced. Finally I included the treatment guidelines for Sjogren's Syndrome put out earlier this year by the Sjogren's Syndrome Foundation. In total I emailed 68 pages of PDFs. Then all I could do is wait.
The last week in August I finally got a call from the nurse at the insurance company who was handling the appeal. I was already expecting the worse as the last few weeks seemed to be blow after blow with medications. Much to my delight the external reviewer overturned the insurance company's decision and they have to pay for the Rituxan. Unfortunately due to how the prescription was written and some bureaucracy this ruling only covers one round of treatment (2 infusions), so in a few months we get to play this game again.
Due to other medical appointments, procedures, and tests as well as my upcoming trip to California I am not able to actually have the first infusion till the 19th. I am very hopeful that the combo of Rituxan and Methotrexate will get me back to a point where my health is more stable and there is less disease activity.
Many of my close friends know how frustrating this summer has been. As you can see from my last post I have been flaring since student teaching in the spring. In the past it was hard to control flares because we didn't know the underlying cause/disease and therefor the appropriate treatment. This is no longer the case. I have a diagnosis (plus) and awesome team of doctors who come up with aggressive treatment plans. Theoretically when one treatment starts working and my doctors change the treatment plan I should be able to start the new treatment and hopefully be on my way to feeling better. However when that treatment cost $10,000 or $20,000 and off label it is not that simple.
If you have been reading my blog you will know back in March the neurologist I had been seeing ordered IVIG. However it was denied and the appeal was denied. I could have seeked out external review but there was a couple reasons I did not. First off my neurologist was not super helpful in the whole thing which would have made it really difficult to win. The second issue was my rheumatologist was already trying to push Rituxan. He agreed that if he had to choose which to take IVIG was the more appealing less scary option but also used words like organ involvment and expressed there was not a ton of research in cases like mine (ironically he also thought it would be easier to get insurance approval). It gets tricky when trying to find treatments that work for Sjogren's and Behcet's (we can't treat the diseases separately because the treatments are too similar). So the week before camp started I finally agreed to Rituxan and had an appointment where I was basically going over all the ways it could kill me and I signed my life away in hopes of finally getting some control over my health.
By the following week I should have theoretically been setting up my Rituxan infusions but instead I got word that my insurance was not approving the prior authorization. Back to the appeals department we went. It seemed like everything that could have gone wrong with my appeals did. They were constantly telling my doctor and I different things. The fastest way to get a denied treatment approved is a peer to peer and I was encouraged to have my doctor call for this, However when my doctor called they told him to send a letter of medical necessity instead. Which he did yet it somehow did not make it in to the appeal file. Despite both his office sending it and the fact I physically sent in to the insurance's office to make sure they got it. I was not given a decision when I was supposed to be. In the appeals policy is clearly states 30 calendar days to receive a decision, the people in the office tried to tell me it was actually 30 business days. In the end the appeal was denied claiming Rituxan was still experimental in Sjogren's, despite more than the required 2 studies and the treatment being part of the Sjogren's Syndrome treatment guidelines that came out this year.
The final option in an external review, which while I decided against it for IVIG it was time to try it for Rituxan as it was my best and one of the few remaining treatment options. For an external review as the name suggests all the information both on my own medical history and the insurance policy are sent to an external review company. I received a call from the nurse handling it on the insurance company's end explaining I had 10 days to send them any additional information I would like looked at in the review process (although the process could take another 45 days). I explained I was hesitant to send the information through the insurance company due to previous mishandling. In the mail I received the contact information of the woman in charge of my case at the external review company and was able to get an email to send documents to, which was really important as waiting for the contact information already cut in to my 10 day window.
As you can imagine I had my medical records ready to go, including the letter from my rheumatologist that had been left out previously. I also am lucky as a Temple student I have access to a ton of medical databases and research studies. After spending hours reading through some I found a couple that seemed to most support the use of Rituxan in my particular case of Sjogren's and the manifestations/organ involvment I have experienced. Finally I included the treatment guidelines for Sjogren's Syndrome put out earlier this year by the Sjogren's Syndrome Foundation. In total I emailed 68 pages of PDFs. Then all I could do is wait.
The last week in August I finally got a call from the nurse at the insurance company who was handling the appeal. I was already expecting the worse as the last few weeks seemed to be blow after blow with medications. Much to my delight the external reviewer overturned the insurance company's decision and they have to pay for the Rituxan. Unfortunately due to how the prescription was written and some bureaucracy this ruling only covers one round of treatment (2 infusions), so in a few months we get to play this game again.
Due to other medical appointments, procedures, and tests as well as my upcoming trip to California I am not able to actually have the first infusion till the 19th. I am very hopeful that the combo of Rituxan and Methotrexate will get me back to a point where my health is more stable and there is less disease activity.
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