I received a phone call today from CHLA (Timothy's current hospital) BMT department. Timothy's bone marrow search has been denied... The reason: it's an experimental cure. As I have mentioned on the previous post, most of the information online are outdated by at least 15 years. And back then, BMT was experimental, but it did work even back then... Even now, there's been only 40 or so cases around the world who have had bone marrow transplant with a non-related donor. CGD is indeed a very rare disease and there aren't much data out there. And again I wonder, why Timothy? Only God knows...
My first reaction after hearing the news was anger. Why didn't they let us know right away? (It was denied a month ago.) And what's the real reason for the denial? Is it really because the insurance company thinks it's experimental and is worried it will jeopardize my son's health and well-being? Or is it all about money? After my initial bout of frustration, I was disheartened and lost. Now what? There was so much comfort in knowing there was a plan of action. We were going to find Timothy his match and he would be cured. No worries and no meds. Today was a hard day. I felt at a loss. I was sad for my son.
CHLA is going to appeal the denial and so are we... but it's going to be a long process. I feel tired already. It seems as if God has different plans for Timothy and us. Pray with us.
I'm sorry about the news but we will definitely continue to pray for Timothy. :(ReplyDelete
Stupid @!#$%!! I can't believe that! I'm sorry to hear guys. We'll continue to pray.ReplyDelete
WTH, how can they do that? Keep fighting, Alice....ReplyDelete
So in the end it's about money and not about what can cure an illness? Please help me understand the logic that insurance companies are using. Sorry, nevermnd. So now we pray for the appeal process, and that we fight the good fight on this battlefront. Be strong, Alice.ReplyDelete
That's one of the issues with health care today. Insurance companies are "for profit" companies. Definitely appeal, and appeal again if necessary. There are multiple levels of appeal. Most appeals are handled by people working for the insurance company. How ridiculous is that? The fox guarding the hen house. If all appeals are denied internally, you can request an external appeal. Unfortunately its time and work to get there, but the insurance company banks on the fact that by making it difficult, many people give up and the insurance company "wins" by ultimately not having to pay for expensive treatments. These companies priorities are not the patients, but their shareholders. Insurance company stocks continue to make huge profits despite a bad economy. You have to just keep fighting them. good luck.ReplyDelete
I am so sorry... just reading this made me cry and my heart break for your whole family. We will continue to pray for guidance and insight!ReplyDelete
I'm so sorry. In my opinion, insurance companies are crooks! We will continue to pray for your family.ReplyDelete
Remember that no man (or company) has control of Timothy's future. Thank God that He loves Timothy perfectly. Trust in His plan, Alice, and keep pressing on! I will lift up a prayer for you guys right now. Timothy is so cute. :). Give him a big smooch for me!ReplyDelete
Praying with you...ReplyDelete