Funny, I said pretty much the same thing (way back when), when I was waiting, waiting, waiting, desperately seeking/hoping/wondering which sof/vel trial I might/could get into - back then, I was just drooling/pining watching "tkflex36" belly up for his meal at the sof/vel trial bar, and I said "I'll have what he's having please"!
I know I am jumping ahead, but have you settled this decision with your team - what drugs THEY will want to use for your HCV? I know what YOU want, surely THEY know what you want. Did they agree, when the time comes?
It will be interesting to see what happens with VOX, HOW popular it will become, it SHOULD!, compared to riba (considering ALL the attributes between the 2), but, so far it looks like only riba is going to be used with Epclusa (when required) for now. VOX, as I read it, is superior in important ways. Why don't we hear more talk or rumours about VOX yet?? C.
robertsamx said
Aug 8, 2016
Thanks C, and I would like a side of VOX with that EPCLUSA. RC
Linuxter said
Aug 8, 2016
Canuck wrote:
Linux, These trials wouldn't help MommaT anyway, as she does not live in Malaysia, Singapore, Russian, Sweden, nor has she had a liver transplant in Switzerland! Geez, why does there ALWAYS have to be something in the way! C.
DOH ...
L
(Thanks for 'splainin')
Canuck said
Aug 8, 2016
RC,
Will be interesting to see how Vox progresses.
YOU will be a lucky guy, as you will now not have to wait/search for "trial" Epclusa, YOURS is going to be served and delivered to you on an "approved" platter! You have the best maitre d's at your table.
C.
robertsamx said
Aug 8, 2016
I think we have seen the end of the Gilead trials for Sof-vel-vox and any combo of the mentioned drugs, Gilead has moved on to hep-b drugs in R/D. RC
Canuck said
Aug 8, 2016
Linux, These trials wouldn't help MommaT anyway, as she does not live in Malaysia, Singapore, Russian, Sweden, nor has she had a liver transplant in Switzerland! Geez, why does there ALWAYS have to be something in the way! C.
Linuxter said
Aug 8, 2016
Hi Canuck,
Thanks for the excellent data ... once again you bring us such helpful, up-to-date and relevant information ...
... it's greatly appreciated!
MommaT,
As has already been mentioned, this all takes time, just work (communicate) with your doctor to get the insurance thing resolved. It sounds like your doctor will help push this treatment ... just takes a while.
Wishing you the best, please do keep us informed on how it's going.
Linux
Canuck said
Aug 8, 2016
MommaT,
I don't know how much prior searching you have done, re: trials, but you did ask (originally). Have you any experience searching NCT's - if not, it does take some practise and lots of reading to slog through the data.
Here are the only 6 on "Epclusa" one I could pull up, after a careful read you, will see whether any are really running (for intake), where, and what their their exclusionary criteria are.
Whenever I have searched, there are always many that do not or will not pan out for one reason or another.
You have a script, your doc should be your best ally in helping you get the drugs (mainstream, versus trial), but, any which way would be good!
Was that the only" reason" offered to you and your doc from insurance ... that Epclusa will "always" be "too new" for them? - they have no other criteria for which they did (or would) base their refusal on?? C.
A service of the U.S. National Institutes of Health
Terry, sorry for all your stress on this, but be patient.... This too will pass and I am sure the doctor can clarify that with your genotype etc. EPCLUSA is the proper treatment. Insurance companys sometimes slow on getting up to date. Hang in there. Chris
MommaT said
Aug 5, 2016
Hi! Thank you for your reply! You give me direction of what to do and
hope that the cost can be negotiated. Thank you I needed that!!! Now
to get my Dr to fight for the script.... she herself wanted - Epclusa!
I have waited for a medication I could feel comfortable with so this is BIG
for me! Tess
Tig said
Aug 5, 2016
If this is your first go at treatment, it is very common for your insurance provider to deny the initial treatment request. Your doctor has to appeal it and if necessary, request a peer to peer consult with the individual making the decision. The diagnosis of cirrhosis places you on the top of the list for treatment. There are a lot of stall tactics played, but a fact based rebuttal from your/his doctor should result in approval.
I spoke to my daughter today, she works for a pharmacy in NC. She checked for me and said Epclusa is available through their supplier. The retail price for a 28 day supply is $24,359.30. So, it can be purchased and certainly is available.
Harvoni is used for genotypes 1, 4,5 and 6.
MommaT said
Aug 5, 2016
Hi-I think I was in denial about the HE c for years because my ALT/AST were low AND the drugs being used to treat were HARSH. I took notice when I heard about Sovaldi had no Interferon BUT still there was still the RIBAVIRIN-Fast forward to My ALT/AST high and now Compensated Cirrhosis-2016 I was so EXCITED about NEW Epclusa-No interferon/ribavirin and now I am BLOCKED! I want a Med I can get behind and be successful with. Thank you for listening! Tess
MommaT said
Aug 5, 2016
Hi Candace-I think Harvoni is for Genotype 1. Interesting to hear that Epclusa being accepted instead of Harvoni for Medicare patients. You are right the Epclusa is $75,000.00 and is cheaper than Sovaldi/Ribavirin $84,000. So why would Amerihealth deny and not see the savings and that it is better tolerated? I am angry! The CDC website recommendation for Genotype 2 says to use Epclusa. They now know that the Ribavirin is more toxic and less tolerated and should be avoided if possible. So to get Insurance companies on board when the FDA fast tracked this medication is a challenge to say the least. Thank you-I am venting
CandaceV said
Aug 5, 2016
You probably do remember my posts...my husband was in denial for 25 years and refused to get tested. It took another 5 years to get him to agree to treatment. Why he felt like that escapes me. Why anyone would prefer ignorant bliss to getting cured is just stupid. Maybe fear. I'm just happy it all worked out, and we have hope for a cure.
Canuck wrote:
Hey, good!
I was hoping you two would meet/chat/compare notes.
It's always good to do so.
You just never know just what info might come up that proves useful!.
Candace - I replied to you hurriedly a bit ago, but I do believe (now) that I recall prior posts from you, re: your hubby, so it is a welcome "back" to you then! Glad you got the Epclusa! C.
Tig said
Aug 5, 2016
Here is some additional information on the recent release and availability of Epclusa. Please note that Gilead's Support Path Patient Assistance program is available for those qualified.
There are a number of patient/payment assistance programs available. There's a blue link in my signature line that will take you to a thread here with a list of organizations that may be able to provide help.
CandaceV said
Aug 5, 2016
Medicare paid because it was cheaper than Harvoni...Harvoni was $103,000 vs. $75,000 for Epclusa. The foundation that helped was Patient Access Network (PAN) 1-866-316-7263. Good luck, let me know if you need anything else.
MommaT wrote:
Hi! Thank you for your reply. I have Amerihealth and they denied the Epclusa saying it may never be covered with them because it is new.. What foundation helped you? I am in New Jersey and My husband and I make under $100,00.00. I really think a no Interferon or Ribavirin medication is superior! Thank You!
Canuck said
Aug 5, 2016
Hey, good!
I was hoping you two would meet/chat/compare notes.
It's always good to do so.
You just never know just what info might come up that proves useful!.
Candace - I replied to you hurriedly a bit ago, but I do believe (now) that I recall prior posts from you, re: your hubby, so it is a welcome "back" to you then! Glad you got the Epclusa! C.
MommaT said
Aug 5, 2016
Hi! Thank you for your reply. I have Amerihealth and they denied the Epclusa saying it may never be covered with them because it is new.. What foundation helped you? I am in New Jersey and My husband and I make under $100,00.00. I really think a no Interferon or Ribavirin medication is superior! Thank You!
CandaceV said
Aug 5, 2016
Hi MommaT, my husband got Epclusa, started today. He's on Medicare and has a supplemental policy. A foundation here in Ohio paid his $585 co-pay as well. He has a gastroenterologist that handled insurance. Where are you located? He's using a specialty pharmacy who can help you get it if you're in the States, and their number is 1-844-428-7387. It's Aureus Specialty Pharmacy. They can get a referral from your doctor and work with insurance and grants. Income for 2 people less than $100,000 annually can get help with co-pays. Let me know if I can be of any further help.
MommaT said
Aug 5, 2016
Hi-I am Hep c 2b -found out after 9/11/2001 when I donated blood. My ALT and AST are high I just got Fibroscan
Compensated cirrhosis.
I do not understand if Epclusa is highly tolerated without side effects and all genotypes -why it is not available.
Also see that there are people taking it maybe trials? Any input I am exhausted calling and researching getting nowhere!
RC,
Funny, I said pretty much the same thing (way back when), when I was waiting, waiting, waiting, desperately seeking/hoping/wondering which sof/vel trial I might/could get into - back then, I was just drooling/pining watching "tkflex36" belly up for his meal at the sof/vel trial bar, and I said "I'll have what he's having please"!
I know I am jumping ahead, but have you settled this decision with your team - what drugs THEY will want to use for your HCV? I know what YOU want, surely THEY know what you want. Did they agree, when the time comes?
It will be interesting to see what happens with VOX, HOW popular it will become, it SHOULD!, compared to riba (considering ALL the attributes between the 2), but, so far it looks like only riba is going to be used with Epclusa (when required) for now. VOX, as I read it, is superior in important ways. Why don't we hear more talk or rumours about VOX yet?? C.
Thanks C, and I would like a side of VOX with that EPCLUSA. RC
DOH ...
L
(Thanks for 'splainin')
RC,
Will be interesting to see how Vox progresses.
YOU will be a lucky guy, as you will now not have to wait/search for "trial" Epclusa, YOURS is going to be served and delivered to you on an "approved" platter! You have the best maitre d's at your table.
C.
I think we have seen the end of the Gilead trials for Sof-vel-vox and any combo of the mentioned drugs, Gilead has moved on to hep-b drugs in R/D. RC
Linux, These trials wouldn't help MommaT anyway, as she does not live in Malaysia, Singapore, Russian, Sweden, nor has she had a liver transplant in Switzerland! Geez, why does there ALWAYS have to be something in the way! C.
Hi Canuck,
Thanks for the excellent data ... once again you bring us such helpful, up-to-date and relevant information ...
... it's greatly appreciated!
MommaT,
As has already been mentioned, this all takes time, just work (communicate) with your doctor to get the insurance thing resolved. It sounds like your doctor will help push this treatment ... just takes a while.
Wishing you the best, please do keep us informed on how it's going.
Linux
MommaT,
I don't know how much prior searching you have done, re: trials, but you did ask (originally). Have you any experience searching NCT's - if not, it does take some practise and lots of reading to slog through the data.
Here are the only 6 on "Epclusa" one I could pull up, after a careful read you, will see whether any are really running (for intake), where, and what their their exclusionary criteria are.
Whenever I have searched, there are always many that do not or will not pan out for one reason or another.
You have a script, your doc should be your best ally in helping you get the drugs (mainstream, versus trial), but, any which way would be good!
Was that the only" reason" offered to you and your doc from insurance ... that Epclusa will "always" be "too new" for them? - they have no other criteria for which they did (or would) base their refusal on?? C.
Example: "Heart attack" AND "Los Angeles"
Search for studies:Search Results
Modify this search | How to Use Search Results
Terry, sorry for all your stress on this, but be patient.... This too will pass and I am sure the doctor can clarify that with your genotype etc. EPCLUSA is the proper treatment. Insurance companys sometimes slow on getting up to date. Hang in there. Chris
Hi! Thank you for your reply! You give me direction of what to do and
hope that the cost can be negotiated. Thank you I needed that!!! Now
to get my Dr to fight for the script.... she herself wanted - Epclusa!
I have waited for a medication I could feel comfortable with so this is BIG
for me! Tess
If this is your first go at treatment, it is very common for your insurance provider to deny the initial treatment request. Your doctor has to appeal it and if necessary, request a peer to peer consult with the individual making the decision. The diagnosis of cirrhosis places you on the top of the list for treatment. There are a lot of stall tactics played, but a fact based rebuttal from your/his doctor should result in approval.
I spoke to my daughter today, she works for a pharmacy in NC. She checked for me and said Epclusa is available through their supplier. The retail price for a 28 day supply is $24,359.30. So, it can be purchased and certainly is available.
Harvoni is used for genotypes 1, 4,5 and 6.
Hi-I think I was in denial about the HE c for years because my ALT/AST were low AND the drugs being used to treat were HARSH. I took notice when I heard about Sovaldi had no Interferon BUT still there was still the RIBAVIRIN-Fast forward to My ALT/AST high and now Compensated Cirrhosis-2016 I was so EXCITED about NEW Epclusa-No interferon/ribavirin and now I am BLOCKED! I want a Med I can get behind and be successful with. Thank you for listening! Tess
Hi Candace-I think Harvoni is for Genotype 1. Interesting to hear that Epclusa being accepted instead of Harvoni for Medicare patients. You are right the Epclusa is $75,000.00 and is cheaper than Sovaldi/Ribavirin $84,000. So why would Amerihealth deny and not see the savings and that it is better tolerated? I am angry! The CDC website recommendation for Genotype 2 says to use Epclusa. They now know that the Ribavirin is more toxic and less tolerated and should be avoided if possible. So to get Insurance companies on board when the FDA fast tracked this medication is a challenge to say the least. Thank you-I am venting
Here is some additional information on the recent release and availability of Epclusa. Please note that Gilead's Support Path Patient Assistance program is available for those qualified.
Gilead Sciences - Epclusa
There are a number of patient/payment assistance programs available. There's a blue link in my signature line that will take you to a thread here with a list of organizations that may be able to provide help.
Hey, good!
I was hoping you two would meet/chat/compare notes.
It's always good to do so.
You just never know just what info might come up that proves useful!.
Candace - I replied to you hurriedly a bit ago, but I do believe (now) that I recall prior posts from you, re: your hubby, so it is a welcome "back" to you then! Glad you got the Epclusa! C.
Hi! Thank you for your reply. I have Amerihealth and they denied the Epclusa saying it may never be covered with them because it is new.. What foundation helped you? I am in New Jersey and My husband and I make under $100,00.00. I really think a no Interferon or Ribavirin medication is superior! Thank You!
Hi-I am Hep c 2b -found out after 9/11/2001 when I donated blood. My ALT and AST are high I just got Fibroscan
Compensated cirrhosis.
I do not understand if Epclusa is highly tolerated without side effects and all genotypes -why it is not available.
Also see that there are people taking it maybe trials? Any input I am exhausted calling and researching getting nowhere!