I got a phone call from from First Health Part D prescription insurance, saying the appeal had been denied. Never got a letter. Two days later, I got a call from the UNC pharmacy that the appeal had been approved!... I just had to come up with a $3300/month co-pay! The pharmacist said they were trying to get coupons from Gilead so it would only cost me $5/pill.
I got a call from the pharmacy on Monday, saying I had received a grant, would be paying nothing out of pocket, and when should they send the meds?
So, I now have the Sovaldi and Ribavirin, and am just waiting for the approval to go ahead.
I'll keep posting progress reports, and I'll have plenty of questions, I'm sure!
Hi John. I'm sure you probably thought of this already, but since you're getting different answers from different people I would get any kind of written confirmation I could regarding costs. If they send you a bill for $100K+ in a few months it would be good to have some back up to show what was agreed upon. I'm not saying this will happen - it just seems to be chaos out there right now with getting these meds paid for. I'd protect myself as much as possible. On the brighter side, congrats on getting approved and starting treatment! Best of luck to you.
Very wise advice PW....I keep everything. Have a folder an inch and 1/2 thick.
-- Edited by jimbob on Thursday 22nd of May 2014 08:25:17 PM
patiently_waiting said
May 22, 2014
jh1947 wrote:
A bit of an update on the situation.
I got a phone call from from First Health Part D prescription insurance, saying the appeal had been denied. Never got a letter. Two days later, I got a call from the UNC pharmacy that the appeal had been approved!... I just had to come up with a $3300/month co-pay! The pharmacist said they were trying to get coupons from Gilead so it would only cost me $5/pill.
I got a call from the pharmacy on Monday, saying I had received a grant, would be paying nothing out of pocket, and when should they send the meds?
So, I now have the Sovaldi and Ribavirin, and am just waiting for the approval to go ahead.
I'll keep posting progress reports, and I'll have plenty of questions, I'm sure!
Hi John. I'm sure you probably thought of this already, but since you're getting different answers from different people I would get any kind of written confirmation I could regarding costs. If they send you a bill for $100K+ in a few months it would be good to have some back up to show what was agreed upon. I'm not saying this will happen - it just seems to be chaos out there right now with getting these meds paid for. I'd protect myself as much as possible. On the brighter side, congrats on getting approved and starting treatment! Best of luck to you.
beingsassy said
May 22, 2014
I also have genotype 2 and am on sovaldi and ribavirin. These meds have proved to be particularly effective with gt 2. Glad you are gonna be taking them. I am on week 11 starting today. There are miminal side effects and the meds are well tolerated, watch out for anemia cause that's the big one. Most people are UND by week 4 so there is a good chance of a cure. It took me 8 weeks to reach UND but I'm the exception not the rule. Use baby shampoo, baby wash and baby powder and lotion which will help avoid the rashes, be kind to yourself for the next 12 weeks. The fatigue and mental confusion have been my worst side effects. Your doctor will probably order lots of blood tests during the course oF tx. but it hasn't really been bad. I've managed to work full time and attend classes while on the medication so it doesn't always interfer with ur life too much. Good luck and let us know how you do with updates.
gigi
OldenSlow said
May 22, 2014
Maybe it's a sign the recent shift in Medicare treatment guidelines is starting to pay off. Probably too early for that, but still nice to think so.
wayne
Tig said
May 22, 2014
Congratulations John! I'm so happy to hear you were approved for this excellent treatment. It's odd how they came to approve you by twice denying it and twice approving! Double the fun huh? Whatever it takes, lol! Your chances of success are quite high and you have good reason to be excited. If you have any questions regarding payment assistance programs, we have a good reference thread here on the forum in the Knowledge section. Gilead's coupon program has been very helpful for many of our members, it should work out well for you too. Good luck going forward, I'm anxious to hear about your first undetectable test!
Tig
jh1947 said
May 22, 2014
A bit of an update on the situation.
I got a phone call from from First Health Part D prescription insurance, saying the appeal had been denied. Never got a letter. Two days later, I got a call from the UNC pharmacy that the appeal had been approved!... I just had to come up with a $3300/month co-pay! The pharmacist said they were trying to get coupons from Gilead so it would only cost me $5/pill.
I got a call from the pharmacy on Monday, saying I had received a grant, would be paying nothing out of pocket, and when should they send the meds?
So, I now have the Sovaldi and Ribavirin, and am just waiting for the approval to go ahead.
I'll keep posting progress reports, and I'll have plenty of questions, I'm sure!
Huey said
May 10, 2014
Your situation is understandable but before you know if Sovaldi and ribavirin is right for you , you have to get a genotype test , Then depending on what your genotype is the right drug combo may or may not be available for your type. you may have to use the interferon and you may hold off till something better is ready, It all depends.
jh1947 said
May 9, 2014
Thanks to all for the warm welcomes, and great advice. I am a bit overwhelmed, at the moment, with all the options and possibilities. Luckily for me this forum seems like a very accessible place to suss things out!
mallani said
May 7, 2014
Hi and welcome from me as well, John.
In the USA, you should be able to access Sovaldi/ Ribavirin. The US Forum members have advised you about this.
In the rest of the world, Peg/ Riba remains the only treatment. However, with SVR rates of 80-90% for Geno 2, this is hardly a problem.
Good luck.
Kellie said
May 7, 2014
Hi John, welcome from me too. You've found a wonderful forum of caring people. Don't give up the fight - tx will happen.
OldenSlow said
May 7, 2014
Hi John and welcome from me, as well. From what I can tell browsing the NC First Health Part D online formulary (updated 4/22/14), Sovaldi is not covered under any of their plans. It's possible that an exception could be granted, so you may well choose to follow the fine advice of my fellow members and push for all it's worth. Should that fail, coverage dynamics could change once newer treatment options hit the market. Medicare is problematic across the country.
Best of luck to you,
wayne
Groupergetter said
May 7, 2014
Hi John, welcome to the forum. BC/BS has written protocol/policy used to establish criteria for dispensing Sovaldi. I looked at the Maine website and their formulary hadn't been updated to include Sovaldi though I'm reasonably certain it is a covered med (This can very from state to state). Contact BC/BS at the number on your card and ask them where you can find the written criteria for Sovaldi Specialty Medicine prescribing. It is available, just need to know where to look.
Most insurances use a "step therapy" protocol. Info explaining that can be found here: http:/www.bcbsil.com/member/rx_drugs_hmo This discusses BC/BS HMO guidelines but the "regular" BC plans are similar. As Tig said the SVR outcomes for Sovaldi tx are much better w/far fewer se. If possible I would steer clear of the interferon. The riba may be part of your regimen and most can get through 12 weeks of this tx. Other newer and better med combo's are coming. Good luck in your journey. Diligence is the operative word.
Tig said
May 7, 2014
Hi John,
I'd like to welcome you to the forum too. Your issue with insurance and specifically government controlled benefits are typical of the stories going around right now. The pharmaceutical formulary for Medicare Part D is restrictive and seems to me that they can and will make determinations based on available funding. The determinations for approvals were established in many locations based on existing standards of care, namely Interferon, Ribavirin and either of the PI's, Incivek or Victrelis. When Gilead released a treatment with the backbone drug Sovaldi costing $1000 per pill, $84,000 per 12 week course of treatment, they balked and the pen of denial started swinging wildly. Add Olysio to the mix and the chances for plans like Medicare or Medicaid to cover it became slight. There are a few things you can do to light a fire under the process, but whether you want to at this point is up to you. Looks like your liver health is still in fairly good shape and the need for immediate treatment isn't present. By next year I believe the results from the many current treatments underway will only improve the odds of acceptance across the board. The negative views of Interferon in general are getting better known, especially after the success stories from Sovaldi roll in. Sovaldi has little in the way of negative side effects and that finding alone is carrying more and more weight. On appeal now, the simple fact that a patient does not want to take Interferon is being considered a disqualifying event. Since you haven't treated before and relapsed doesn't show any type of resistance to it, so you should be tested for the IL28B poly morphism and the Q80K poly morphism to determine how your are in those areas. Those two results could work in your favor in any appeal and certainly would make a difference if you decided to treat with INT. Your doctor should be able to discuss these items with you and if s/he hasn't, perhaps as Enavigo mentioned, you might consider a second opinion.
The new and upcoming treatment from Gilead, Sovaldi and Ledispavir will offer the highest rates of SVR than ever before. How the combo affects those with genotype 2 continues to be researched. Here's a link to some information that discusses briefly the current treatment options: http://www.hepmag.com/articles/2512_18756.shtml. Were I in your shoes, I'd do as suggested and contact your doctor and find out what the status of your appeal is. It's certainly worth investigating. There are some additional payment assistance programs and organizations available. I've dealt with some listed and have also compiled a list here on the forum that is fairly comprehensive. I recommend contacting them, the Pan Foundation is an excellent group and is most helpful. You can access the list using the link in my signature block or it can be found in our Knowledge Base thread on the Home page.
Good luck John and if you have any questions, please check out our search function at the top center of each page. You can also ask any question and one of the great people here will be quick to help! I'm glad you're here! Be well...
Tig
Isiscat2011 said
May 6, 2014
Way to go, Enavigo. You are a force of nature. Kicking some virus butt and knocking down walls all over the place. !!
Enavigo3891 said
May 6, 2014
Hey John! Welcome - I'm in NC also and I'm genotype 2 as well! (there isn't always a letter associated with GT2, some get one back in their test and some don't. It's weird but don't worry as it doesn't affect your treatment).
Per your age and your mention of part D I presume you are a medicare recipient and unfortunately that's likely the reason they are pushing back. They are crazy to say you shouldn't be on Sovaldi/Riba though - as Isiscat said, that's the recommended treatment for us now. I just finished my 12 weeks yesterday; was undetected by week 4. You mentioned you want to learn to advocate for yourself - first lesson, STAY ON YOUR DOCTOR. Call him/her tomorrow about that appeal! Seriously! Are you treating at UNC-CH Transplant center? If not, you may want to look into them - they are much better equipped and educated in the new treatments than many of the GI docs around there. Your doc should fight for you and give you guidance as to who you can call to fight also. And your doc should be staying in touch with you and/or should be returning your calls/messages timely. If you've got to "be that guy" well then "be that guy" and make sure they know you expect the appropriate treatment. As Jill mentioned, there is payment assistance if it comes down to it for Sovaldi - they will/have cover A LOT! Jill gave you one link, the other Gilead one that's direct for Sovaldi that helped with my copay is:
http://www.mysupportpath.com/
I also needed their assistance when I had trouble getting my last refill. They are amazing over there. Now I know the Gilead assistance is NOT available with prescriptions that will/should be covered "in whole or in part" by Medicare however if Medicare is outright denying Sovaldi then that may be a loop hole that gets you the assistance you need! Oh, and buy a notebook or something and write everything down!!! Document every call you made, date/time you made it and to who. Then summarize for yourself what the discussion was about and when you expect to hear back. That way they can't say you didn't do this or that; you will have date and time, which can be verified. Basically, just make people answer your questions, speak up, and if you don't understand something and your doctor's aren't explaining or getting back to you - you can always ask on here! Best of luck.
Isiscat2011 said
May 6, 2014
Welcome JH:
Actually, there are some very good reasons for you not to use Interferon and Riba which is why your doctor didn't prescribe that combo. Sovaldi/Riba is the AASLD recommended treatment for genotype 2. Your insurance company is wrong, and they probably know it, but just don't want to pay so they are dicking you around and hoping you will go away. Arrg...that makes me mad. You will need to follow up with your doc's office to determine the status of your appeal, assuming an appeal has even been filed.
You will probably be on a Sovaldi based regimen whether you decide to treat now, or say 6 months from now, so you are probably going to have to fight that battle anyway. Your doctor is the key to winning the battle and with a little luck he will fight most of it for you.
Your liver is doing well particularly considering you have had the virus 45 years. You must have some good genes and have some favorable environmental factors too. Well done.
Lots of good people here to help you on your journey.
Cinnamon Girl said
May 6, 2014
Hi John, welcome to the forum, I`m glad you found us!
I think you`re very wise to look into your options, and in your position there are better treatments available than peginterferon and ribavirin. We have quite a few members here doing treatment with Sovaldi and some have had issued with their insurance companies over the cost, but I should chase up that appeal as you should have heard something back by now. Hopefully your insurance company will change their mind on appeal but if not then another option would be to look into Gilead`s Patient Assistance program for Sovaldi. I`ll give you the link..
Otherwise it sounds as though you have time to wait for other treatment combos to become available.
I`m sure other members will be along to greet you and add their own experiences. Feel free to look around and join in, this is a very friendly group. Note that we have a search box at the top of the page, right in the middle.
Best of luck!
jh1947 said
May 6, 2014
Just wanted to say hi to the community! I diagnosed with active Hep C about 6 months ago. I'm 66, and have likely had it since 1968 or 69 from a transfusion and/or needle stick while in the army. I am very early Stage 2, genotype 2 (not sure of the letter). My doctor at the University of North Carolina has prescribed Ribavirin and Sovaldi. First Health Part D approved the Ribavirin and denied the Sovaldi, and that is allegedly under appeal.
The insurance company has said that there is no reason for me not to use Ribavirin and Pegasys. I'd rather not, so I am here to try and learn how to advocate for myself, and learn more about my options. I am not even sure my doctor has appealed, since it seems my insurance is supposed to answer an appeal in 7 days or less, and I was denied 3/19/14.
This seems like a great place to learn, and I appreciate and look forward to the opportunity to use it!
Very wise advice PW....I keep everything. Have a folder an inch and 1/2 thick.
-- Edited by jimbob on Thursday 22nd of May 2014 08:25:17 PM
Hi John. I'm sure you probably thought of this already, but since you're getting different answers from different people I would get any kind of written confirmation I could regarding costs. If they send you a bill for $100K+ in a few months it would be good to have some back up to show what was agreed upon. I'm not saying this will happen - it just seems to be chaos out there right now with getting these meds paid for. I'd protect myself as much as possible. On the brighter side, congrats on getting approved and starting treatment! Best of luck to you.
I also have genotype 2 and am on sovaldi and ribavirin. These meds have proved to be particularly effective with gt 2. Glad you are gonna be taking them. I am on week 11 starting today. There are miminal side effects and the meds are well tolerated, watch out for anemia cause that's the big one. Most people are UND by week 4 so there is a good chance of a cure. It took me 8 weeks to reach UND but I'm the exception not the rule. Use baby shampoo, baby wash and baby powder and lotion which will help avoid the rashes, be kind to yourself for the next 12 weeks. The fatigue and mental confusion have been my worst side effects. Your doctor will probably order lots of blood tests during the course oF tx. but it hasn't really been bad. I've managed to work full time and attend classes while on the medication so it doesn't always interfer with ur life too much. Good luck and let us know how you do with updates.
gigi
Maybe it's a sign the recent shift in Medicare treatment guidelines is starting to pay off. Probably too early for that, but still nice to think so.
wayne
Congratulations John! I'm so happy to hear you were approved for this excellent treatment. It's odd how they came to approve you by twice denying it and twice approving! Double the fun huh? Whatever it takes, lol! Your chances of success are quite high and you have good reason to be excited. If you have any questions regarding payment assistance programs, we have a good reference thread here on the forum in the Knowledge section. Gilead's coupon program has been very helpful for many of our members, it should work out well for you too. Good luck going forward, I'm anxious to hear about your first undetectable test!
Tig
A bit of an update on the situation.
I got a phone call from from First Health Part D prescription insurance, saying the appeal had been denied. Never got a letter. Two days later, I got a call from the UNC pharmacy that the appeal had been approved!... I just had to come up with a $3300/month co-pay! The pharmacist said they were trying to get coupons from Gilead so it would only cost me $5/pill.
I got a call from the pharmacy on Monday, saying I had received a grant, would be paying nothing out of pocket, and when should they send the meds?
So, I now have the Sovaldi and Ribavirin, and am just waiting for the approval to go ahead.
I'll keep posting progress reports, and I'll have plenty of questions, I'm sure!
Your situation is understandable but before you know if Sovaldi and ribavirin is right for you , you have to get a genotype test , Then depending on what your genotype is the right drug combo may or may not be available for your type. you may have to use the interferon and you may hold off till something better is ready, It all depends.
Thanks to all for the warm welcomes, and great advice. I am a bit overwhelmed, at the moment, with all the options and possibilities. Luckily for me this forum seems like a very accessible place to suss things out!
Hi and welcome from me as well, John.
In the USA, you should be able to access Sovaldi/ Ribavirin. The US Forum members have advised you about this.
In the rest of the world, Peg/ Riba remains the only treatment. However, with SVR rates of 80-90% for Geno 2, this is hardly a problem.
Good luck.
Hi John, welcome from me too. You've found a wonderful forum of caring people. Don't give up the fight - tx will happen.
Hi John and welcome from me, as well. From what I can tell browsing the NC First Health Part D online formulary (updated 4/22/14), Sovaldi is not covered under any of their plans. It's possible that an exception could be granted, so you may well choose to follow the fine advice of my fellow members and push for all it's worth. Should that fail, coverage dynamics could change once newer treatment options hit the market. Medicare is problematic across the country.
Best of luck to you,
wayne
Hi John, welcome to the forum. BC/BS has written protocol/policy used to establish criteria for dispensing Sovaldi. I looked at the Maine website and their formulary hadn't been updated to include Sovaldi though I'm reasonably certain it is a covered med (This can very from state to state). Contact BC/BS at the number on your card and ask them where you can find the written criteria for Sovaldi Specialty Medicine prescribing. It is available, just need to know where to look.
Most insurances use a "step therapy" protocol. Info explaining that can be found here: http:/www.bcbsil.com/member/rx_drugs_hmo This discusses BC/BS HMO guidelines but the "regular" BC plans are similar. As Tig said the SVR outcomes for Sovaldi tx are much better w/far fewer se. If possible I would steer clear of the interferon. The riba may be part of your regimen and most can get through 12 weeks of this tx. Other newer and better med combo's are coming. Good luck in your journey. Diligence is the operative word.
Hi John,
I'd like to welcome you to the forum too. Your issue with insurance and specifically government controlled benefits are typical of the stories going around right now. The pharmaceutical formulary for Medicare Part D is restrictive and seems to me that they can and will make determinations based on available funding. The determinations for approvals were established in many locations based on existing standards of care, namely Interferon, Ribavirin and either of the PI's, Incivek or Victrelis. When Gilead released a treatment with the backbone drug Sovaldi costing $1000 per pill, $84,000 per 12 week course of treatment, they balked and the pen of denial started swinging wildly. Add Olysio to the mix and the chances for plans like Medicare or Medicaid to cover it became slight. There are a few things you can do to light a fire under the process, but whether you want to at this point is up to you. Looks like your liver health is still in fairly good shape and the need for immediate treatment isn't present. By next year I believe the results from the many current treatments underway will only improve the odds of acceptance across the board. The negative views of Interferon in general are getting better known, especially after the success stories from Sovaldi roll in. Sovaldi has little in the way of negative side effects and that finding alone is carrying more and more weight. On appeal now, the simple fact that a patient does not want to take Interferon is being considered a disqualifying event. Since you haven't treated before and relapsed doesn't show any type of resistance to it, so you should be tested for the IL28B poly morphism and the Q80K poly morphism to determine how your are in those areas. Those two results could work in your favor in any appeal and certainly would make a difference if you decided to treat with INT. Your doctor should be able to discuss these items with you and if s/he hasn't, perhaps as Enavigo mentioned, you might consider a second opinion.
The new and upcoming treatment from Gilead, Sovaldi and Ledispavir will offer the highest rates of SVR than ever before. How the combo affects those with genotype 2 continues to be researched. Here's a link to some information that discusses briefly the current treatment options: http://www.hepmag.com/articles/2512_18756.shtml. Were I in your shoes, I'd do as suggested and contact your doctor and find out what the status of your appeal is. It's certainly worth investigating. There are some additional payment assistance programs and organizations available. I've dealt with some listed and have also compiled a list here on the forum that is fairly comprehensive. I recommend contacting them, the Pan Foundation is an excellent group and is most helpful. You can access the list using the link in my signature block or it can be found in our Knowledge Base thread on the Home page.
Good luck John and if you have any questions, please check out our search function at the top center of each page. You can also ask any question and one of the great people here will be quick to help! I'm glad you're here! Be well...
Tig
Way to go, Enavigo. You are a force of nature. Kicking some virus butt and knocking down walls all over the place. !!
Hey John! Welcome - I'm in NC also and I'm genotype 2 as well! (there isn't always a letter associated with GT2, some get one back in their test and some don't. It's weird but don't worry as it doesn't affect your treatment).
Per your age and your mention of part D I presume you are a medicare recipient and unfortunately that's likely the reason they are pushing back. They are crazy to say you shouldn't be on Sovaldi/Riba though - as Isiscat said, that's the recommended treatment for us now. I just finished my 12 weeks yesterday; was undetected by week 4. You mentioned you want to learn to advocate for yourself - first lesson, STAY ON YOUR DOCTOR. Call him/her tomorrow about that appeal! Seriously! Are you treating at UNC-CH Transplant center? If not, you may want to look into them - they are much better equipped and educated in the new treatments than many of the GI docs around there. Your doc should fight for you and give you guidance as to who you can call to fight also. And your doc should be staying in touch with you and/or should be returning your calls/messages timely. If you've got to "be that guy" well then "be that guy" and make sure they know you expect the appropriate treatment. As Jill mentioned, there is payment assistance if it comes down to it for Sovaldi - they will/have cover A LOT! Jill gave you one link, the other Gilead one that's direct for Sovaldi that helped with my copay is:
http://www.mysupportpath.com/
I also needed their assistance when I had trouble getting my last refill. They are amazing over there. Now I know the Gilead assistance is NOT available with prescriptions that will/should be covered "in whole or in part" by Medicare however if Medicare is outright denying Sovaldi then that may be a loop hole that gets you the assistance you need! Oh, and buy a notebook or something and write everything down!!! Document every call you made, date/time you made it and to who. Then summarize for yourself what the discussion was about and when you expect to hear back. That way they can't say you didn't do this or that; you will have date and time, which can be verified. Basically, just make people answer your questions, speak up, and if you don't understand something and your doctor's aren't explaining or getting back to you - you can always ask on here! Best of luck.
Welcome JH:
Actually, there are some very good reasons for you not to use Interferon and Riba which is why your doctor didn't prescribe that combo. Sovaldi/Riba is the AASLD recommended treatment for genotype 2. Your insurance company is wrong, and they probably know it, but just don't want to pay so they are dicking you around and hoping you will go away. Arrg...that makes me mad. You will need to follow up with your doc's office to determine the status of your appeal, assuming an appeal has even been filed.
You will probably be on a Sovaldi based regimen whether you decide to treat now, or say 6 months from now, so you are probably going to have to fight that battle anyway. Your doctor is the key to winning the battle and with a little luck he will fight most of it for you.
Your liver is doing well particularly considering you have had the virus 45 years. You must have some good genes and have some favorable environmental factors too. Well done.
Lots of good people here to help you on your journey.
Hi John, welcome to the forum, I`m glad you found us!
I think you`re very wise to look into your options, and in your position there are better treatments available than peginterferon and ribavirin. We have quite a few members here doing treatment with Sovaldi and some have had issued with their insurance companies over the cost, but I should chase up that appeal as you should have heard something back by now. Hopefully your insurance company will change their mind on appeal but if not then another option would be to look into Gilead`s Patient Assistance program for Sovaldi. I`ll give you the link..
http://www.gilead.com/responsibility/us-patient-access
Otherwise it sounds as though you have time to wait for other treatment combos to become available.
I`m sure other members will be along to greet you and add their own experiences. Feel free to look around and join in, this is a very friendly group. Note that we have a search box at the top of the page, right in the middle.
Best of luck!
Just wanted to say hi to the community! I diagnosed with active Hep C about 6 months ago. I'm 66, and have likely had it since 1968 or 69 from a transfusion and/or needle stick while in the army. I am very early Stage 2, genotype 2 (not sure of the letter). My doctor at the University of North Carolina has prescribed Ribavirin and Sovaldi. First Health Part D approved the Ribavirin and denied the Sovaldi, and that is allegedly under appeal.
The insurance company has said that there is no reason for me not to use Ribavirin and Pegasys. I'd rather not, so I am here to try and learn how to advocate for myself, and learn more about my options. I am not even sure my doctor has appealed, since it seems my insurance is supposed to answer an appeal in 7 days or less, and I was denied 3/19/14.
This seems like a great place to learn, and I appreciate and look forward to the opportunity to use it!