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Hello, I’m Just following up with my Vyvgart Hytrulo experience/Insurance Challenges. As mentioned in my previous post,
Hytrulo is my fourth infusion type since diagnosis 5 years ago. I’m 65 years old and initially had a rough start on Hytrulo as the insurance company BCBS continues to deny it every time I get a cycle dose behind me.
Due to fighting with insurance, it was 70 days between approvals from ULTOMIRIS to Vyvgart Hytrulo that certainly set my health back into full on gMG symptoms. The First 4- week cycle of Hytrulo was rough mostly due to the 70 day delays between the two medications. I didn’t notice much relief in the first cycle of Hytrulo, then we fought it out with the insurance for 3-more weeks before receiving the second cycle. About half way into the second cycle, my gMG symptoms began to decline rapidly and I felt much better at the end of the 2nd cycle. I went to the Mayo Clinic and they suggested a higher dose or shorter cycles to get more medication in my system in which the insurance would not approve.
Then when ordering the 3rd cycle, BCBC denied it again stating the FDA does not approve self injections in the way of Vyvgart Hytrulo type infusions… If you look it up, that is true except for the administration to gMG patients…? I am a gMG patient with at least 12 of the many Myasthenia symptoms especially respiratory, vision, swallowing etc.
In my opinion, the FDA denial is just another excuse for BCBC to deny another expensive treatment…
After another 45 days of fighting with the insurance, I was approved again with a peer to peer consultation with my doctor and an insurance advocate. I finished the last cycle a week ago and I’m just not myself with most of the gMG symptoms lingering at surface again… These insurance delays are setting my stress levels, gMG symptoms and body strength back substantially.
No surprises this week, but I’m back fighting BCBC again cause I was denied again when ordering #4 cycle of an original 12 month approval… FDA related again..!
In short, I believe Vyvgart Hytrulo works very well if I could get on a steady consecutive cycle dose in my system without insurance interference and their 30-70 day delays in between. I have turned 65 this year and I have BCBC insurance through my employer but due to the battles with my insurance, I have recently signed up for Medicare and currently looking for a good supplement Plan B,C or D plan that will cover Vyvgart Hytrulo. If anybody knows a good plan, I’d be grateful if you could pass it along…
As for the insurance coverages for gMG, We or at least I hear it in the media weekly about someone may lose their life or a loved one if they do not receive the critical treatment and medications that they desperately need due to insurance denials. Myasthenia Gravis Patients are no different.
At 65, I still want/need to work two more years and would also like to enjoy a quality of life after employment so our gMG meds are critical to us as well, similar to telling a diabetic that they are denied for insulin, gMG symptoms can also become fatal if not treated properly.
I’m not sure if anyone else is having the same challenges with gMG insurance denials that I’ve been battling but if so, it’s certainly a Topic that probably needs to be brought up in the forum on how to navigate through these denials when dealing with insurance companies and Myasthenia Gravis.
Best Regards,
Mark