I wanted to share my lengthy, over 2 month, insurance process I endured for the drugs Tafinlar & Mekinist before ultimately receiving the medication through the Novartis Patient Assistance Foundation in January of 2017. Novartis is the maker of the drugs. My Anaplastic PXA Brain Tumor harbors the BRAF V600e mutation that these drugs target however they are still not yet FDA approved for brain cancer but they are for Melanoma with the same mutation, so it is very likely most insurance companies will try to deny these targeted drugs for brain cancer treatment as the cost is about $23K per month in the United States.
I wish I would have known what the process of approval of these meds looked like when the decision was made to start them for treatment.
1. My Neuro Oncologist placed the priority order with our private insurance BC/BS and they had 72 hours (business hours) to respond and denied the order because they are not FDA approved for my diagnosis
2. Appealed to insurance company and they had another 30 days before needing to make a final decision. My physician sent in a written statement along with my medical records and any other supporting evidence-other case reports, clinical trial results, etc. and again was denied.
3. Next process with insurance company was to have an independent case review by another physician, (selected by the insurance company.) my Neuro Oncologist again submitted everything from step 2 along with a personal call to plead my case as I’ve exhausted other chemotherapy options. Again it was unfortunately denied.
4. With denial process steps of private insurance company complete, the Novartis Patient Assistance Foundation application was fairly simple, needing patient financial information and physician statements than approved quite quickly..It took about a week and was approved for 1 year of the medication at no cost and delivered directly to my home. If needing for longer duration will need to resubmit application.
I’m hoping as more proof of benefit of these targeted drugs is available that insurance companies will approve, but very grateful for the Novartis Patient Assistance Foundation to come through in desperate situations to continue to help patients like myself. Undue waiting for the answer on needed medications to properly continue treatment plan course is tremendously hard because it is so out of our control as patients & caregivers. I definitely kept calling throughout the process for updates…but still so discouraged at the system. The brain tumor and treatment sometimes seems much easier than all the unexpected hoops we often must jump through. Hoping this helps shed light, my advice is when It is definitively known you will need these medications, work with your oncologist office to get all the necessary paperwork in everywhere timely and keep a log/timetable of the process, who you talked to, what was said, what’s needed, etc. Good Luck @csaylor