It looks like I'm going to have to wait for treatment...
skewedButNotBroken said
Jun 27, 2014
Thanks everyone I really appreciate your input. It's really nice to share with people who have a common bond!
Huey said
Jun 26, 2014
Isiscat2011 wrote:
skewedButNotBroken wrote:
She told me that in my case he will more than likely suggest that I wait for the sofosbuvir/Ledipasvir treatment to be approved in Nov. of this year.
The S/L combo will be approved Oct 10. It tends to do better with 1as than the S/O combo.
Getting off label is especially hard if you don't have any Interferon disqualifiers and liver fibrosis is not severe. It is probably getting harder now that the new DAAs are so close.
Hang in there!
If a rival drug Co; invents a pill that significantly shortens treatment time , the Insurance Co. will go on a approval spree. Reason to hope;
We are all in this together Keep your stick on the ice. "Red Green Show"
Isiscat2011 said
Jun 26, 2014
skewedButNotBroken wrote:
She told me that in my case he will more than likely suggest that I wait for the sofosbuvir/Ledipasvir treatment to be approved in Nov. of this year.
The S/L combo will be approved Oct 10. It tends to do better with 1as than the S/O combo.
Getting off label is especially hard if you don't have any Interferon disqualifiers and liver fibrosis is not severe. It is probably getting harder now that the new DAAs are so close.
Hang in there!
Fireman Rob said
Jun 26, 2014
Hi Testiva,
Where you're feeling that bad physically, I wouldn't give up on trying to get your doc to prescribe Sovaldi/Olysio now. Personally, I would rather have the record of your insurance denying treatment for when the new combos come available if nothing else.
This may speed up the process and the S/O combo will likely make you feel much better than you do now. Furthermore, you never know- the drug companies are helping people right now and if your insurance denies it, keep appealing and apply for assistance through big pharma simultaneously.
Good luck and don't give up!
Huey said
Jun 26, 2014
Looks like your Dr. is going to get you on a non Peg-IN Tx. I would Wait, if I were you., with a geno of 1a,, the odds are better.
Tig said
Jun 26, 2014
Hi Testiva,
I sense the disappointment in your post and understand why you're anxious to get your treatment underway and behind you. I would ask to see if you can have a sit down with your doctor to explain this very important aspect of your life. Does your doctor know about your daily flu like symptoms? As you probably know it's a very common symptom of HCV and like you're experiencing, these symptoms can be debilitating. Symptoms like this, along with your biopsy scores/stages have an impact on the decisions made not only by the doctor, but the insurance board making the decision to approve. There are decisions made on compassionate grounds, not just physiologic. But your doctor has to be wiling to go to bat for you. If your doctor can present your case properly and with meaning, your continued and progressive worsening of your quality of life (my impression) could impact the people making the decision. But you have to really let your health care team know how miserable you feel.
They may want to delay treatment based on price, but I'm almost certain, in the near future, with the advent of all these new DAA's and the continuing S/O phase 3 studies, the prices will be reduced, making these protocols more affordable for everyone. The payment assistance programs will continue to be available and if you aren't employed by a company providing a policy that covers the costs of this treatment, those programs will still be available to you. You're not alone in this situation, trust me on that. More and more attention is being paid by physicians and the insurance community in general. Especially now that the SVR success rates have improved so dramatically. All of a sudden that nasty, long and drawn out Interferon based nightmare of a protocol has been replaced by a rapid, all oral, highly successful model that every pharmaceutical manufacturer is trying to get a piece of. It may be expensive on paper, but you watch, as these treatments continue to improve (97-100% rates of success don't have much room for improvement), the medical/insurance community will see the logic of providing quick access to this highly successful treatment. They already are beginning to understand the intelligence of approving these treatments, even the off label S/O protocol, because of the potential cost savings down the road.
Forgive my rambling on now, but I want you to understand, that I understand your frustration and disappointment. You should do your best to share your feelings with your doctor and he/she in turn with your insurance company. Let them know how important this opportunity is to you and you may be pleasantly surprised to find out they feel your grief and approve it. Aside from your flu like symptoms and other symptoms, it appears that your liver health isn't at a crisis level. You do have time to wait in that respect, and the new protocols, as well as the recent releases will continue to improve. So try and find the positive in that and realize everything will get better, drug efficacy and access to care included. Hang in there, your turn is coming...
Tig
skewedButNotBroken said
Jun 26, 2014
I talked to Dr. Martin's nurse this morning (he is on vacation this week) and she told me that all of my test results are in. One thing that Dr. Martin asked for was the liver slides from a biopsy that I had performed in late Jan. of this year. He wanted the pathologist at the University of Miami to regrade the slides and they scored me as A3 F2. His nurse told me that the insurance companies are starting to balk much harder against paying for off-label treatment. Dr. Martin is a COMOS protocol advocate. She told me that in my case he will more than likely suggest that I wait for the sofosbuvir/Ledipasvir treatment to be approved in Nov. of this year.
Also, the test results for Hep B were negative but she said I was reactive to Hep A and my cryoglobulin test was negative.
I was really hoping to be treated with the COSMOS protocol. I know that many people state that they have very few symptoms but I feel like I've got the flu almost every day of my life. On rare occasions when this demon virus lets up, I actually feel good, but that is maybe 1 day every two or three months. Sometimes I feel so bad that I don't know how I'm going to make it through the day, so as crazy as it seems I was actually hoping that they would have graded my biopsy worse than F2, but anyway I guess it's time to hurry up and wait and hope I still have a job with insurance when the new drugs become available at the end of the year.
Thanks everyone I really appreciate your input. It's really nice to share with people who have a common bond!
If a rival drug Co; invents a pill that significantly shortens treatment time , the Insurance Co. will go on a approval spree. Reason to hope;
We are all in this together Keep your stick on the ice. "Red Green Show"
The S/L combo will be approved Oct 10. It tends to do better with 1as than the S/O combo.
Getting off label is especially hard if you don't have any Interferon disqualifiers and liver fibrosis is not severe. It is probably getting harder now that the new DAAs are so close.
Hang in there!
Hi Testiva,
Where you're feeling that bad physically, I wouldn't give up on trying to get your doc to prescribe Sovaldi/Olysio now. Personally, I would rather have the record of your insurance denying treatment for when the new combos come available if nothing else.
This may speed up the process and the S/O combo will likely make you feel much better than you do now. Furthermore, you never know- the drug companies are helping people right now and if your insurance denies it, keep appealing and apply for assistance through big pharma simultaneously.
Good luck and don't give up!
Looks like your Dr. is going to get you on a non Peg-IN Tx. I would Wait, if I were you., with a geno of 1a,, the odds are better.
Hi Testiva,
I sense the disappointment in your post and understand why you're anxious to get your treatment underway and behind you. I would ask to see if you can have a sit down with your doctor to explain this very important aspect of your life. Does your doctor know about your daily flu like symptoms? As you probably know it's a very common symptom of HCV and like you're experiencing, these symptoms can be debilitating. Symptoms like this, along with your biopsy scores/stages have an impact on the decisions made not only by the doctor, but the insurance board making the decision to approve. There are decisions made on compassionate grounds, not just physiologic. But your doctor has to be wiling to go to bat for you. If your doctor can present your case properly and with meaning, your continued and progressive worsening of your quality of life (my impression) could impact the people making the decision. But you have to really let your health care team know how miserable you feel.
They may want to delay treatment based on price, but I'm almost certain, in the near future, with the advent of all these new DAA's and the continuing S/O phase 3 studies, the prices will be reduced, making these protocols more affordable for everyone. The payment assistance programs will continue to be available and if you aren't employed by a company providing a policy that covers the costs of this treatment, those programs will still be available to you. You're not alone in this situation, trust me on that. More and more attention is being paid by physicians and the insurance community in general. Especially now that the SVR success rates have improved so dramatically. All of a sudden that nasty, long and drawn out Interferon based nightmare of a protocol has been replaced by a rapid, all oral, highly successful model that every pharmaceutical manufacturer is trying to get a piece of. It may be expensive on paper, but you watch, as these treatments continue to improve (97-100% rates of success don't have much room for improvement), the medical/insurance community will see the logic of providing quick access to this highly successful treatment. They already are beginning to understand the intelligence of approving these treatments, even the off label S/O protocol, because of the potential cost savings down the road.
Forgive my rambling on now, but I want you to understand, that I understand your frustration and disappointment. You should do your best to share your feelings with your doctor and he/she in turn with your insurance company. Let them know how important this opportunity is to you and you may be pleasantly surprised to find out they feel your grief and approve it. Aside from your flu like symptoms and other symptoms, it appears that your liver health isn't at a crisis level. You do have time to wait in that respect, and the new protocols, as well as the recent releases will continue to improve. So try and find the positive in that and realize everything will get better, drug efficacy and access to care included. Hang in there, your turn is coming...
Tig
I talked to Dr. Martin's nurse this morning (he is on vacation this week) and she told me that all of my test results are in. One thing that Dr. Martin asked for was the liver slides from a biopsy that I had performed in late Jan. of this year. He wanted the pathologist at the University of Miami to regrade the slides and they scored me as A3 F2. His nurse told me that the insurance companies are starting to balk much harder against paying for off-label treatment. Dr. Martin is a COMOS protocol advocate. She told me that in my case he will more than likely suggest that I wait for the sofosbuvir/Ledipasvir treatment to be approved in Nov. of this year.
Also, the test results for Hep B were negative but she said I was reactive to Hep A and my cryoglobulin test was negative.
I was really hoping to be treated with the COSMOS protocol. I know that many people state that they have very few symptoms but I feel like I've got the flu almost every day of my life. On rare occasions when this demon virus lets up, I actually feel good, but that is maybe 1 day every two or three months. Sometimes I feel so bad that I don't know how I'm going to make it through the day, so as crazy as it seems I was actually hoping that they would have graded my biopsy worse than F2, but anyway I guess it's time to hurry up and wait and hope I still have a job with insurance when the new drugs become available at the end of the year.