Insurance has denied coverage

snakebite @snakebite

Not sure what you have tried yet to continue coverage, but I suggest the following if have not tried:

1. Check out Vonjo web site under support, many drug companies has assistance for provide help with insurance coverage.
2. Check out insurance appeal process. Find out what is required to get approval for using ongoing. Keep appealing.
3. Discuss with dr at next appt what you find out from Vonjo and Insurance company.

Hopefully someone on Connect who has had to fight this battle to obtain Vonjo will be able to tell you what worked for them.

Gook luck, it is so frustrating when insurance companies have this much control over our health.

laurie

Are you in the U.S? What insurance company is this? Why prorect their name? We need to know who we should avoid so we don't have the same thing happen to us. If Mayo hid this I don't understand why. You didn't make this up.
I wish you luck in getting coverage and continuing to improve.

Hello. No I certainly did not make this up. I didn't say the company name because the last thing I need is to have another issue with them. They are a MAJOR player in the field and I've been with them for around 40 years. To be fair, they have paid out a huge amount of money on my behalf and continue to do so. Before I was illegible for Medicare my share of the cost took my life savings pretty quickly. When Medicare kicked in and took over the primary spot, the two of them together paid most of the cost. Lets face it, when these new Cancer drugs show a cost of $20,000 for a one month supply, or Bone Marrow biopsy cost a $16,000, Blood transfusions, Tens of thousand $ cost of injections every two weeks few people can afford them without having both Medicare and a secondary insurance. I'm actually very thankful to have received as much help as I have. I understand my secondary's actions, even though I don't like it. It says that the drug is for people who's platelet level is at or below 50. Mine bounced around that for a long time and they paid for it. When it jumped up and appeared to be staying up that must have set a flag in their system which triggered the denial response. I'm over the initial shock now, at least for the moment, and will see what happens next. Over the course of my journey with this MF/MDS I've been in tough spots before and managed to survive them. One way or another I'm sure that things will work out. God is good and is on my side!

I understand. I didn't realize that they have been extremely helpful in the past and hope that this will be resolved soon.

With all you have been through I hope this won't be a long or difficult fight. You certainly don't need any added stress. May this be decided in your favor soon.

@snakebite, your medical team may be able to help with contesting the decision made by your insurance company. If the medication is deemed medically necessary, I recommend talking with an oncology social worker. At Mayo Clinic, helping to navigate access to treatment is something our social work teams help patients with. You can read more here:
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Is your oncologist aware of the denial by the insurance company? Do you have an oncology social worker?

Hello @colleenyoung. Thank you for you response. Yes, my Oncologist is aware. One of the folks in his office at the California Cancer Center called me and suggested that I contact my secondary. I did, however, it only got me one extra months approval. I have an appointment with Dr. Rao on Jan 9 and am hopeful something can be done. There is a lady in the Pharmacy that does the ground work for getting Grants, coupons and such. When I picked up my last bottle she was aware of the situation. She indicated that if the Doctor insist that I need the drug, that the insurance won't be able to drop me. Humm, I hope she is right. A month ago I was told that I would be getting an Oncology Social Worker, but I have not heard any more about it. I was also told that my secondary insurance would be putting me on Medicare part D. This was suppose to be in addition to their prescription drug program. I had the option to decline it, and ask if it would effect any of my current drugs or coupons etc. They told me it would not..... BUT... the first thing that went through my mind when this all happened was that BCBS was trying to divest its self of the cost burden and somehow place it on Medicare. I will certainly do some more checking. I also have another ZOOM appointment with Dr. Palmer at Mayo, but it's not until March. I was hooked up with her at my local Oncologist request. He wanted a "Second" opinion and having come from the Mayo himself, he has great respect for Dr. Palmer's input. I'm very lucky to have two top tier Oncologist in my corner. Thank you again for your excellent suggestions.

I would also suggest writing to President Biden. He has staff working on issues with drug costs. Back in the 1980s, a friend needed a liver transplant when they were experimental and before they were covered. On my suggestion, she wrote to President Reagan. His office got her into the Mayo Clinic for surgery at no cost. She did not expect to even get an answer and the President of the U.S. helped her get the surgery. Sadly, she died a couple of years later from an infection that took over her bowel. She and her family were grateful for another 10 years. Her original illness was juvenile diabetes and she had many complications in her 39 years of life. Take care!

You might try calling 1-800-MEDICARE to see what they can tell you.

Who is your insurance carrier?

I have sent a message to BCBS Federal Employees of California informing them that I want to appeal their decision. Before I go further I want to meet with my Oncologist and decide the best course. That will happen on the 9th of January. He has been very proactive in my treatments. There is a new drug that has been approved that might be considered. I have a month's supply left. Who knows... maybe stopping the Vonjo won't be as disastrous as I think. I have great faith in Dr. Rao at the Cancer Center, and also will confer with Dr. Palmer at Mayo. In the mean time, I'll have Black Eyed Peas today, New Years Day, for good luck! Ha..