My Last Appointment

This past Thursday, I had an appointment with my pediatric rheumatologist Dr. C. We still haven't been able to get the IVIG approved, and were waiting to hear about the second appeal. Because I haven't been on any treatment for about two months, I am having a lot more inflammation weakness, swelling and stiffness. Until we get everything sorted out with the treatment, Dr. C says that I need to do weekly doses of high dose IV steroids. We also have a backup plan for if the IVIG isn't approved. Since we are kind of running out of treatment options, and I'm so medically unique, its challenging to know what to do. There have been some evidence, that a medication called Orencia, that I have used before for my RA, along with an older medication called sodium thiosulfate, as shown benefit in patients with Dermatomyositis. We also may go back to the Cyclophoshamide (Cytoxan) chemotherapy. This would be if the appeal for the IVIG isn't approved, as IVIG is my best hope. Many doctors call it IV gold. IVIG or intravenous immunoglobulin therapy, is composed of donated plasma and immunoglobulins from healthy people. It is used for people who have primary immune deficiencies, in that it helps boost there immune systems. In patients like me, who have autoimmune diseases, it gives them infusion of healthy antibodies of other people, so that there immune systems won't continue to attack them and cause inflammation. 
      My insurance changed from Blue Cross Blue Shield to Aetna on September, 1st,  because Aetna took over the Teachers Retirement System (TRS active care) this means all districts in the state of Texas  now have Aetna. The reason they denied my IVIG is that my IgG level wasn't low enough, and this level has to be low for Aetna to approve it. Now, my doctor and leading specialists in rheumatology have told me that in people with autoimmune disease like me don't have this level low, because of the process that is going on. The people that do have this level low are the people with primary immune deficiencies, and this is the level that Aetna goes by. So basically by their guidelines people with autoimmune diseases, which for many IVIG is a standard treatment, can not get it. Despite my doctor sending an appeal letter the Medical Director upheld his decision. My doctor tried to get a peer to peer with him, because I'm so complex they need to talk over the phone since a letter doesn't do enough. Aetna claimed they couldn't reach the doctor, even though I gave them the correct number three different times, and so they placed the blame on me and the doctors office. So because of a mistake on their part the doctors office could not talk to the Medical Director, because the allotted time had passed, even though it was Aetna's fault. 
      In response to all this unbelievable stuff, I decided to track down the e-mail of the CEO of Aetna, Mark Bertolini, and wrote him a heartbreaking letter explaining what this horrible disease has done to me, how I can't walk or eat, the kind of things that I used to do before I got sick, and how leading physicians say that IVIG is my best bet, and that without it I could die, and that this is a matter of life and death, that my life is literally in his hands, and that he is the only one that could help me. I also attached a heartbreaking letter that my grandfather wrote, with pictures of what my disease has done, and from my Make-A-Wish Trip. I didn't expect anything to happen, but two days later, a woman called in response to my e-mail and talked to me for about 20 minutes. She explained why they said it was denied, and I explained how leading specialists have said that in people with my condition that level is not low. I then reiterated what was in my letter. She said that the letter I attached from my grandfather couldn't be opened, and wanted me to send it again. She then gave me her email and the number to her direct line. She said that they would have their clerical team look into it, talk to my doctor and see what they can do to help me. My family think this is a good sign and that they will approve it. I pray that they do, but am not getting my hopes up. 
      This whole thing has been frustrating. My doctors office says I'm not the only one this is happening to. Since Aetna took over TRS active care this exact thing has been happening to other patients in his practice. My mom also experienced something similar. She has been having issues with her shoulder for two months. A lot of pain, stiffness, and limited range of motion. Her doctor wanted her to have an MRI to see if she has a torn rotator cuff. She had an MRI scheduled for yesterday, and just as she was leaving to go have it done, she gets a phone call saying that Aetna denied the MRI, and said that shed needed to have 6 weeks of PT and another x-ray afterwards before they would approve an MRI. We couldn't believe it. Apparently this is not uncommon though with Aetna. Its so hard dealing with all of this, and I am trying to stay at peace about it, but as I decline its hard. I am just surrendering it to God, because He will always provide for me no matter what, and that helps me to be at peace. Thank you for your continued prayers and support. Pray that this second appeal is approved, and that because of my letter, the hearts of those at Aetna are touched and that they approve my IVIG. Much love and God Bless!!!!


Joyful Love 
         & 
Blessings In The Lord
Alexandra K. Acosta