› Forums › General Melanoma Community › Update from Janet Lee, Zelboraf, Insurance, Etc.
- This topic has 24 replies, 7 voices, and was last updated 11 years, 1 month ago by
Janet Lee.
- Post
-
- March 17, 2013 at 3:59 am
I posted the following in a thread started by POW regarding insurance paying for Zelboraf for non-V600E BRAF mutations such as BRAF V600R. I hope it's ok to post it again as its own topic, as I want to make sure people see this update.
First, thank you so much to POW for her help in this nightmare of trying to get Zelboraf covered by our insurance company. And eternal thanks to everyone on this website for their insight, knowledge, help, and understanding.
I posted the following in a thread started by POW regarding insurance paying for Zelboraf for non-V600E BRAF mutations such as BRAF V600R. I hope it's ok to post it again as its own topic, as I want to make sure people see this update.
First, thank you so much to POW for her help in this nightmare of trying to get Zelboraf covered by our insurance company. And eternal thanks to everyone on this website for their insight, knowledge, help, and understanding.
I can understand the FDA originally approving Zelboraf for the BRAF V600E — after all, the vast majority of BRAF murtations are V600E and it makes sense to concentrate on that group. However, 19 months after the inital approval, shouldn't there be something more to offer for the BRAF mutations OTHER than V600E? My husband Don is V600R.
We have appealed three times to our insurance company; the last appeal was even supported by our Congressman from central Massachusetts, Jim McGovern. Even that was denied — as "not being medically necessary." At their request, we are sending more information to the Office of Personnel Management in Washington, DC to prove that Don is BRAF positive and is being treated for metastic melanoma. In all honesty, I do believe we are dealing with idiots.
In the meantime, mainly through the efforts of Dana Farber, Genentech has agreed to provide Zelboraf to my husband, Don, and he took his first dose at 11:55 a.m. yesterday. (YAY!) Interestingly, even Genentech has in essence tied its own hands and is subject to strict overisght by the FDA in what it does with Zelboraf, and they were not "free" to simply give it to a patient that did NOT have the V600E BRAF mutation. Dana Farber supplied an enormous amount of information to Genentech for them to even consdier giving the drug to Don, including the "Australian" paper from December of 2012 citing exciting positive results for V600R patients.
The other side of the story with Genentech is that Don and I had to "prove" that we were beneath a certain income threshhold. It seems that, if your combined household income is above $100,000 per year, you are not worth helping. If your household income is $99,000 or less, it seems that your life is worthy of help. With Don's illness, he has been unable to work since Christmas; I am not working so that I can help take care of him. So I had to provide "proof" that our income would be below $100,000 in 2013. That may sound like a lot of money to many people, but we are two professionals who have worked for over 40 years to reach this level and have planned for a contented retirement together.
We are continuing our fight with the BC/BS Federal Employee Plan. I honestly believe that the mission of insurance companies is to figure out a way to NOT pay your claim. I believe the bureaucrats put on their blinders and see "V600E" and nothing else.
Don's disease is quite advanced, and I know that waiting these past 6 weeks for a systemic treatment has been detrimental to his overall status. We pray that the Zelboraf will give him some relief from his pain and give us some quality time together.
Until Genentech came through this week with the Zelboraf for Don, Tim Turnham of MRF was unbelievable in his help in getting us into the pipeline for a Glaxo Smith Kline compassionate care use of Dabrafenib. According to Tim, GSK actually wants to use the Dabrafenib on rare BRAF mutations. Because of Dons advanced disease, we really had no choice but to start the Zelboraf rather than wait even a few more days or weeks for the Dabraneib.
I know this post is long, but I have not really had the time to post recently. Don had to have his brain met surgically removed (cyberknife was ineffective — and his brain met brew larger and was affecting him dramatically) and he is now in rehab. We believe tumors are now impinging on his lower spinal column, so the Zelboraf is desperately needed.
Thanks again to you all, who give me hope and support!
Janet Lee
- Replies
-
-
- March 17, 2013 at 4:12 am
I read an article in the local newspaper that brought to mind your posting. This article isn't about melanoma, but it is about fighting health insurance companies. It talks about the affordable heatlh care act and how you can appeal and get an independent assessment. This does vary from state to state, but I'm including the article here as a starter for further research.
http://www.sltrib.com/sltrib/news/55859833-78/insurance-medical-health-review.html.csp?page=1
I'm glad things are moving forward for you!
Best wishes,
Janner
-
- March 17, 2013 at 4:12 am
I read an article in the local newspaper that brought to mind your posting. This article isn't about melanoma, but it is about fighting health insurance companies. It talks about the affordable heatlh care act and how you can appeal and get an independent assessment. This does vary from state to state, but I'm including the article here as a starter for further research.
http://www.sltrib.com/sltrib/news/55859833-78/insurance-medical-health-review.html.csp?page=1
I'm glad things are moving forward for you!
Best wishes,
Janner
-
- March 17, 2013 at 4:12 am
I read an article in the local newspaper that brought to mind your posting. This article isn't about melanoma, but it is about fighting health insurance companies. It talks about the affordable heatlh care act and how you can appeal and get an independent assessment. This does vary from state to state, but I'm including the article here as a starter for further research.
http://www.sltrib.com/sltrib/news/55859833-78/insurance-medical-health-review.html.csp?page=1
I'm glad things are moving forward for you!
Best wishes,
Janner
-
- March 17, 2013 at 12:08 pm
I’m so glad you were able to make progress. Wishing you both strength.
Holly -
- March 17, 2013 at 12:08 pm
I’m so glad you were able to make progress. Wishing you both strength.
Holly -
- March 17, 2013 at 12:08 pm
I’m so glad you were able to make progress. Wishing you both strength.
Holly -
- March 17, 2013 at 11:25 pm
Janet,
Thank you for your update. This is very valuable information for me. My husband is also a V600R mutation and we are waiting for our insurance company to approve his prescription to start Zelboraf. It has been a few days and we have heard nothing. I did not think that it was going to be a problem to get approval since it was FDA approved. Your post has really opened my eyes and perhaps this is the reason that I have not heard anything about the prescription pre-authorization.
My husband had brain mets and had some surgically removed and cyberknifed in Jan. and Feb. He has been off systemic treatment since early Jan. We can see the other tumors growing. He was waiting for a trial but his doctor said that he cannot wait any longer and prescribed Zelboraf. I will be making calls tomorrow to see where we stand in this process. I think that you are totally correct the insurance companies try NOT to pay or pay as LITTLE as possible. We have had our insurance company take back money from hospitals…in one case they took more than they paid in the first place!!!!!
I am glad to hear that Don finally got the Zelboraf, in spite of the insurance company. I hope that it works quickly for him. Please keep us posted about his progress. I would be extremely interested to see how he responds as a V600R, since my husband is the same mutation.
Pat
-
- March 17, 2013 at 11:25 pm
Janet,
Thank you for your update. This is very valuable information for me. My husband is also a V600R mutation and we are waiting for our insurance company to approve his prescription to start Zelboraf. It has been a few days and we have heard nothing. I did not think that it was going to be a problem to get approval since it was FDA approved. Your post has really opened my eyes and perhaps this is the reason that I have not heard anything about the prescription pre-authorization.
My husband had brain mets and had some surgically removed and cyberknifed in Jan. and Feb. He has been off systemic treatment since early Jan. We can see the other tumors growing. He was waiting for a trial but his doctor said that he cannot wait any longer and prescribed Zelboraf. I will be making calls tomorrow to see where we stand in this process. I think that you are totally correct the insurance companies try NOT to pay or pay as LITTLE as possible. We have had our insurance company take back money from hospitals…in one case they took more than they paid in the first place!!!!!
I am glad to hear that Don finally got the Zelboraf, in spite of the insurance company. I hope that it works quickly for him. Please keep us posted about his progress. I would be extremely interested to see how he responds as a V600R, since my husband is the same mutation.
Pat
-
- March 17, 2013 at 11:25 pm
Janet,
Thank you for your update. This is very valuable information for me. My husband is also a V600R mutation and we are waiting for our insurance company to approve his prescription to start Zelboraf. It has been a few days and we have heard nothing. I did not think that it was going to be a problem to get approval since it was FDA approved. Your post has really opened my eyes and perhaps this is the reason that I have not heard anything about the prescription pre-authorization.
My husband had brain mets and had some surgically removed and cyberknifed in Jan. and Feb. He has been off systemic treatment since early Jan. We can see the other tumors growing. He was waiting for a trial but his doctor said that he cannot wait any longer and prescribed Zelboraf. I will be making calls tomorrow to see where we stand in this process. I think that you are totally correct the insurance companies try NOT to pay or pay as LITTLE as possible. We have had our insurance company take back money from hospitals…in one case they took more than they paid in the first place!!!!!
I am glad to hear that Don finally got the Zelboraf, in spite of the insurance company. I hope that it works quickly for him. Please keep us posted about his progress. I would be extremely interested to see how he responds as a V600R, since my husband is the same mutation.
Pat
-
- March 23, 2013 at 1:59 am
Pat, I am very interested in how your plight goes with the insurance company. Even thought Don has received the Zelboraf from Genentech, I am not giving up my fight with our insurance company. What right do they have to deny my husband a proven drug that just may well save/extend his life? They have general doctors reading old literature and making decisions with blinders on. How dare they make a decision opposing a melanoma expert from one of the finest cancer institutes in the world who works with this disease day in an day out?
Gene, I appreciate your link to the CNN special with Dr. Weil. But as an individual I feel so HELPLESS. Until this country takes the power away from big business and big money (ie Insurance companies and pharmaceutical companies) and our own elected officials start working for their constituents instead of the big money that gets contributed to their campaigns, how can we realistically effect change?
Good evening to you both.
Janet Lee
-
- March 23, 2013 at 1:59 am
Pat, I am very interested in how your plight goes with the insurance company. Even thought Don has received the Zelboraf from Genentech, I am not giving up my fight with our insurance company. What right do they have to deny my husband a proven drug that just may well save/extend his life? They have general doctors reading old literature and making decisions with blinders on. How dare they make a decision opposing a melanoma expert from one of the finest cancer institutes in the world who works with this disease day in an day out?
Gene, I appreciate your link to the CNN special with Dr. Weil. But as an individual I feel so HELPLESS. Until this country takes the power away from big business and big money (ie Insurance companies and pharmaceutical companies) and our own elected officials start working for their constituents instead of the big money that gets contributed to their campaigns, how can we realistically effect change?
Good evening to you both.
Janet Lee
-
- March 23, 2013 at 1:59 am
Pat, I am very interested in how your plight goes with the insurance company. Even thought Don has received the Zelboraf from Genentech, I am not giving up my fight with our insurance company. What right do they have to deny my husband a proven drug that just may well save/extend his life? They have general doctors reading old literature and making decisions with blinders on. How dare they make a decision opposing a melanoma expert from one of the finest cancer institutes in the world who works with this disease day in an day out?
Gene, I appreciate your link to the CNN special with Dr. Weil. But as an individual I feel so HELPLESS. Until this country takes the power away from big business and big money (ie Insurance companies and pharmaceutical companies) and our own elected officials start working for their constituents instead of the big money that gets contributed to their campaigns, how can we realistically effect change?
Good evening to you both.
Janet Lee
-
- March 18, 2013 at 4:15 pm
The following website has a possible explanation… be sure to watch both video's.
-
- March 18, 2013 at 4:15 pm
The following website has a possible explanation… be sure to watch both video's.
-
- March 18, 2013 at 4:15 pm
The following website has a possible explanation… be sure to watch both video's.
-
- You must be logged in to reply to this topic.