Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: johnsshutts on October 16, 2014, 08:36:16 am
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I have an appointment at 10:15 to start Harvoni. I called GEHA, my health insurance with the Federal Government. I was told it takes 48 hours for the pre authorization, which I will be approved. I called express scripts and they told me it will take 7 to 10 days to get my Harvoni shipped to me. I called CVS and Walgreens yesterday, and they never heard of Harvoni. Express Scripts already has harvoni in their system. $200 co-pay for 30, and $500 co-pay for 84. I am not sure if I can use the $5 co-pay coupon from Gilead? One person told me yes, and another said no. I will soon be cured! Took peg and co-peg over 10 years ago for 14 months, no luck! I am geno 1A with 7 million viral load. Been taking max milk thistle and liver care for around 8 years. It has kept it under control! I have my good days and bad days! You learn to live with it. A lot better treatments out now. You will be cured too!
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Johnsshutts - That is fantastic - since you are one of the first to start Harvoni since it was approved, I am going to move your post so it is a new topic. I don't want anyone to miss is. Also, be sue you call http://www.mysupportpath.com/ so they can help you with the co-pay.
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Just got back from the doctor. He wrote his first precription to me for Harvoni. Now I have to wait for it in the mail! It will probably take aroung 10 days! I will keep you all posted. I soon will be cured!
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The if all goes well, the end of January you will be starting a new chapter in your life.
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And I am going to retire in January at the age of 56! A fresh new start in life! Thank you so much!
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Nice!
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I am getting my Harvoni through express scripts. Express Scripts told me that they don't except the $5 Harvoni co-pay coupon. I called the support path and they told me I can do the rebate on line also, and get my rebate in around 6 weeks. www.patientrebateonline.com. This rebate is good for Harvoni or Sovaldi. Either way I will get the $600-$15 co-pay back. You all should check into this rebate if you already paid your co-pay. Go to the Gilead web site to support path to get your co-pay coupon first. If express scripts doesn't except it, I will do the rebate on line. One person said they except it, and two people told me no. I was also told to call them back and do a test run. I will keep you all posted.
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Thanks for the info. I'm going to the doc Nov 5 hope to start Harvoni soon after that. Good luck!
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I just go ta call from my HepC treatment team they informed me they had just submitted my application for approval. She said they expect a reply by next Wednesday. Its in Gods hands my insurance is Blue Cross Blue Shield of FL.
I have a great hepc team at the Mayo Clinic Florida. They may be a 3hr drive away but its worth it they are healers. Saw GP for annual physical was telling him about Harvoni he didn't know that it was approved. He then ask who my doctor is at Mayo Clinic. I told him and his reply was he had two other patience's that had her. He said she's great she calls him to keep him up to date on them. I give them A+++. They take most insurance just call and ask.
There going be surf next few days from Hurricane Gonzalo YEA
Surfed John
PS my GP said I was in better shape than most 40 year olds I told him I wish my body felt like a 40 year old not a 61 year old LOL
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I called accredo with express scripts yesterday afternoon and I was told that my harvoni was denied. I was told that my paperwork stated that I do not have hep c and that I did not have a liver biopsy., crazy! I called my doctor's office and they were aware that it was denied. They told me they are going to appeal it. They said they would work on it Monday. I was told it could take up to 14 days to appeal it. I called GEHA, my health insurance and they were not able to help me. I told them you have all my paperwork stating I have hep c and I had a liver biopsy. You paid to have all of this done! I was on prior treatment for 14 months, over 10 years ago with peg and co-peg. I called Accredo again, they are a speciality clinic for express scripts and I asked for the approval dept. I was told that my paperwork is still being processed for harvoni. I am thinking that I am getting the run around with accredo because harvoni is very expensive. Home delivery is $87,898.21 for a 84 day supply. I pay $5 with my co-pay coupon. I think they are trying to push Gilead to lower the price. I was on the phone for over 3 hours yesterday evening trying to straighten all of this out. I can't understand what is calling on. I was so confused over this. Each person I would talk to would give me a different story! I was so excited, and now I am really bummed out. I don't no how long they are going to stall this, and when and if it will get approved! I have the second largest health insurance company, GEHA, with the federal government. I will keep you all posted.
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Doing a lot of research on why my harvoni was denied. Now I think I know why I was getting the run around on the phone for over 3 hours!
http://www.fiercepharma.com/story/pricey-hep-c-drugs-beware-express-scripts-plans-showdown/2013-12-11
This wbsite is interesting. It states: Pricey hep C drugs, beware: Express Scripts plans a showdown. Now I think I know why my harvoni was denied!
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I was warned that once people really started applying for these drugs that this would happen. That is why I decided to do treatment sooner rather than waiting. I am now a retired fed employee , but, only use GEHI for my dental and use Blue Cross Blue Shield for my med and carried them all over into retirement. Retiring from govt is best thing I ever and you will love it too. I am doing the sovaldi and ribavirin with 4 more weeks to go now - UGH!!
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Hello I've been holding off posting on this topic dealing with approvals etc. Here is an abbreviated version of my experience with express scripts. Things happened very quick for me - approved, meds in hand in less than a week.
Pharmacy orders meds...went in to pick up meds w/ co-pay coupons. Sovaldi $5
Olysio-$25. Pharmacyst enters all info - everything accepted. W/O coupons cost would've been $150 per script pr mth.-totaling $900. Time for 2nd scripts to be ordered pharmacy informed me they could no longer help me with my perscriptions
because insurance company refused payment. Apparently Express Scripts has a big problem with these co-pay coupons concerning these high priced meds. In a nut shell they feel the patients should absorb costs of co-pays so as not to add "extra costs to the system". Had to get meds through another specialty pharmacy. Insurance comp. and Express Scripts battled it out for over a month. In the mean time, pharmacy I was going through, because they weren't getting paid, had their
credit limit cut in half because of the price of my meds and had to send some customers to other pharmacys. They did eventually get paid after all that hoolabaluh! They also use payment delay tacticts, etc. The joys of politics! That's one of the chapters in my on-going saga. There's more some other time. Anyways all's well that ends well! Google - The dark side of co-pay coupons express scripts.
Bad Brad
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I never bothered with coupons (did not think they would work with benefits) and let the specialty pharm just charge me the $50 copay for each month. Would have been $55 for thee months after that, but, I am only doing 12 weeks. I know how the gov works when it comes to discounts etc.. It slows everything down and causes more paperwork and redirecting of things with more approvals on inside. I just wanted it pushed through. If I filled script anywhere else but the spec pharm for Blue Cross Blue Shield (which is CVS Gov Mail-in Pharm and Spec Pharms) it would then be a percentage - yuk yuk
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The co pay assistance coupons are for people with private insurance. I got mine on line, but when the specialty pharmacy at my hospital filled my prescriptions (S&O) they had already secured them and deducted them from my copay. I have BCBS of NC and they use Express Scripts as well. $30 a month is a lot better than $200 so I was happy about that. My IDS knew that the insurance providers were going to start their BS about cost and that is why she did not wait for Harvoni and started me on S&O nearly four months ago.
Bucky
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I hope this treatment really does the trick so I do not have to deal with anything else in the coming year as it will probably get worse for many. BCBS is so different in each state too, even the gov benefit. I have BCBS of Tenn.. I do not think anyone on this site is in Tenn besides me - lol
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I hope this treatment really does the trick so I do not have to deal with anything else in the coming year as it will probably get worse for many. BCBS is so different in each state too, even the gov benefit. I have BCBS of Tenn.. I do not think anyone on this site is in Tenn besides me - lol
Tess, I see that you are retired and have BCBS as part of your pension package. I am a NC State retiree (58 years old) and have BCBS as well. I used the co pay coupons because I could not leave $600 on the table. My co pay would have been $200 a month. I am glad I got my meds before the BS started as I knew it would. I figured it out and the cost of treatment with S&O was equal to about 20 years of premiums paid by my former employer to BCBS of NC.
Bucky
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A lot of good advice everyone, thank you. We will be cured!
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I had to go with GEHA because my doctors office stopped taking BCBS. I really liked BCBS, but I like my doctor more, on well. I know I will get approved for harvoni soon!
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I had to go with GEHA because my doctors office stopped taking BCBS. I really liked BCBS, but I like my doctor more, on well. I know I will get approved for harvoni soon!
Well, this is the first time I have heard of a practice quitting BCBS. I have mixed feelings about them, but I am stuck with them until I am 62. I will have to purchase part B for my primary and I switch over to another company (two choices) for secondary coverage. Between the two I will be covered in case of a major event and I want go bankrupt. BCBS Express scripts will continue to provide my drug coverage so I won't need part D and won't have that doughnut hole to worry about.
I sure hope you get the Harvoni soon and you can get busy getting the dragon out of your system.
Bucky
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I never heard that about BCBS. The reason I have kept them is that everyone in all parts of Tennessee accepts them, and I mean everyone. Seems the BCBS of TN is the preferred. Fortunately the the Fed BCBS here is better than the one the State gov uses especially when it comes to the pharm part. When I am old enough for medicare I will pay for the part B and the BCBS will be my secondary. When that happens they pickup where other leaves off and also let deductibles and co pays go as a result. I have been checking with many older than I on how it has worked out for them. They take the premiums right out of my pension anyway so any cost of living increase I get I never see since the premiums always go up more -haha - so what else is new, right?
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I know, I can't believe it when I got the letter in the mail a few years ago that my doctor stopped taking BCBS. I had them for 10 years, and they were great. My doctor is with a place called Thomas Spann Clinic. It has several doctors offices, lab work, x-rays ect. It was so convenient having everything done in the same place. I heard that BCBS didn't want to pay them enough for their services. That's a great idea keeping the government insurance. I will do that too. thanks for the great advice.
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Actually about 10 yrs ago TriStar Network which is HCA Hospitals here in Tennessee had a dispute with BCBS of TN re contract and fees they were getting paid, they are a for profit hospitals (Centennial, Sara Cannon etc) and we all get letter that they would no longer be in network provider. So many people were then planning to get new doctors that they renegotiated and we got another letter within 90 days that they were back in. And that was the end of it. Seems so many people here in TN besides city, state and fed gov use some form of their plans that it hit their pocketbook. I had forgotten all about that as it was quite some time ago. I have had them for 30 yrs now.
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I was recently diagnosed (August) with Hep c 1b with a viral load of 4.7 million. I had a liver biopsy and am stage 3. My doctor prescribed Harvoni on 10/13 and I received the prescription on 10/17 from American Specialty Pharmacy. I am on BCBS and the pharmacy automatically applied the $5 copay coupon before I asked them to. I am 3 days in and will have my next blood work on the 31st. I will keep you posted on any changes.
So far I had some nausea with the first two days and fatigue. I have been having headaches but am able to manage them.
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I am also dealing with Accredo (express scripts). I was a bit pushy with them and managed to get approved and started really quickly. Keep calling, push it, don't give up. We are patients and have no control over what the Pharma's are charging. I was pretty nervous about getting my approval but I got it and hopefully you can as well. Make sure your doctors are providing them with everything they need to get you approved, I think that has a ton to do with it as well. I wish you all luck and health and strength as we battle this beast.
Day 10 of 90 on S/O - first blood test expected at day 14 (praying this is working)
~Mel~
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Harvoni Denied: I talked to the pharmacy tech that is handling my paperwork. He told me the insurance company wants to put me on Sovaldi and Ribavirin, which is $36,000.00 for 28 days. Harvoni is $31000,00 for 28 days. They don't want to approve Harvoni because it is a new drug, crazy. I was on peg and co-peg for 14 months , over 10 years ago, no cure. I am a geno 1a with a 7 million viral load, between stage 1 and 2. I been getting the run a round for 4 days with express scripts, a lot of different stories why I was denied. I finally found the source to talk to. I have a peace of mind now. The tech said to give him a week or two and he should get my Harvoni approved. I told him I was extremly sick from the peg and co-peg, and had to resign from my job as a supervisor. I had to take a lot lower paying job. I will be patient and wait a week. I have his direct number and extention. It is in the lords hands now, and my insurance company! Oh yea, I have Express Scripts, which is part of Accredo, and Acaria is delivering my medicine out Houston, very confusing! I called Express Scripts 4 times, and got 4 different stories why I was denied, crazy again. I have GEHA insurance with the federal government.
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Oh John - I am so hoping this works out. Sovaldi+Rib is not a reasonable alternative.
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I'll be praying for you!
~Mel~
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David Heitz is a free lance writer from LA. He wants to write our stories on our hep c medicine being denied. He wants to get national attention on this. david.heitz13@gmail.com
David,
I called Express Scripts again yesterday. I was told that I was denied Harvoni hep c medicine because my hep c isn't severe enough. I have called the approval department at Express Scripts 6 times since last Friday. I get a different story on why I was denied each time. I know it is because of the price. I should be getting a letter in the mail soon. I will keep you posted. I hope I get my medicine soon. My liver is between stage 1 and 2. Stage 2 is cirrhosis. I tested positive over 12 years ago. I was on peg and co-peg for 14 months, over 10 years ago, not cured. I was extremly sick all the time. I had to resign from my supervisor position at TSA with the federal government, and take a lot lower paying job with the federal government. I have a degree in management. I had to give all of that up. I now basically have a labor position, making $20,000 less a year, for the past 9 years. I have been taking herbs, max milk thistle and liver care for over 8 years. I think it has helped to keep it under control. I have good health insurance with the federal government. I have been working for over 40 years. I deserve better then this. All of this doesn't make sense to me. I want to be cured, and start a fresh new life. My family and myself deserve this. I even quit smoking over 3 weeks ago, and my wife quit over 5 weeks ago. I am planning on retiring in January, at 56 years old. I want to get cured and go back into management, because that is what I enjoy doing. The last 9 years of work has been miserable. Thank you David. You have a nice day sir. You can contact me anytime. I look forward to hearing from you.
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Thank you so much everyone for your support and great advice. I will keep you all posted. I will be cured, hopefully soon!
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Good morning John,
In reading you post I see that you are stage 2. Stage 2 in not considered Cirrhosis in the US. The scale rating is F1-F4 with F4 being Cirrhosis. How was your stage conformed? Was it with a biopsy, ultra sound or fibroscan? Has your doctor mention a MELD or CTP rating. What does your liver panel and CBC look like? All these test and ratings are considered when evaluating the state of your liver.
As you know, insurance companies use the fibrosis score (F) to refuse granting meds. Could it be that you have been rated wrongly on your med request? If you have clinically diagnosed Cirrhosis F3-F4 using one of the methods I mentioned earlier, then your fibrosis score needs to be correct to reflect the fact that you actually need the meds now. If you are actually only a F2 this is the hang up with your approval.
Bucky
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Thanks for the good info Bucky. I will check this over.
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Bucky - Docs don't do CTP or MELD here until you have cirrhosis - no need to if John is between F1-2.
It is a mess. A lot of people are fighting it. I will blog on it if I learn anything else.
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I was denied for Harvoni Friday. I called the support path with Gilead. They are going to work on getting it approved. 1-855-769-7284 I don't have to make no more calls and get the runaround! I will keep you all posted.
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Bucky - Docs don't do CTP or MELD here until you have cirrhosis - no need to if John is between F1-2.
It is a mess. A lot of people are fighting it. I will blog on it if I learn anything else.
Hello Lucinda,
True point. That is why I asked about them to determine if something was going on with the staging of his liver damage. I figured if he had advanced damage then he would have know about a MELD score.
I know it is probably not accurate but mine fell from 18 to 7 using my blood work post treatment.
Bucky
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Lucinda, Thank you so much for your support and great advice. I am going to be patient now. I have done everything in my power to get Harvoni approved. Now I will give it some time. I will keep you posted. Have a very nice evening Lucinda. I will be cured!
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How is the Sovaldi/Olysio working for you, and have you been cured? How is the side effects? How is the side effects for the people using Harvoni? I am geno 1a, with 7 million viral load. Don't know if I will get my Harvoni approved. Express Scripts wants me to take Sovaldi/Ribavirin. I don't want the Ribavirin. I was on prior treatment for 14 months, over 10 years ago, using peg and co-peg, it was rough! Thanks everyone, and have a great day.
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How is the Sovaldi/Olysio working for you, and have you been cured? How is the side effects? How is the side effects for the people using Harvoni? I am geno 1a, with 7 million viral load. Don't know if I will get my Harvoni approved. Express Scripts wants me to take Sovaldi/Ribavirin. I don't want the Ribavirin. I was on prior treatment for 14 months, over 10 years ago, using peg and co-peg, it was rough! Thanks everyone, and have a great day.
Good morning John,
The S&O worked great for me with few side effects except for the sun sensitivity. And once again, I go to a large teaching hospital and I think that had a big part in me being approved for S&O so quickly. The other thing about this combo is the price, almost $160,000 for twelve weeks. I can't speak about Ribavirin since I haven't taken it but there are several members here who have used the S&R combo and went UD in a few weeks.
Bucky
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Thanks a lot Bucky. You have a good evening.
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A fresh new start in life. That is a wonder feeling. Congrats to everyone that has been cured! Congrats to everyone that has the courage and strength to be on treatment! Praying for all of you that are waiting for your meds to be approved, like me. Let me know if you have been cured, and what meds you took, and how you feel now, thanks. I didn't know where to put this, so I put it here. Have a great day everyone. We all will be cured!
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David Heitz is writing an article on hep c, about us getting denied for meds for treatment. I'm sure other stuff on hep c also. He told me the article will be posted tomorrow. Go to healthline.com and type in hepatitis c. I went in there, and they have a lot of great articles on hep c, a great web site.
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I've been keeping a journal from the very beginning. Starts with decision making to finally do treatment, getting drug approval to starting the meds. I have kept it up on a daily basis re all sides and how I have managed them, what worked, didn't seems to work etc. I am on week 9 now and some issues are reappearing and others not. What a ride it is, very unpleasant at times for sure.
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I heard through the grapevine that My Support Path is paying for Harvoni even if there is a flat-out insurance denial. http://www.mysupportpath.com/ (http://www.mysupportpath.com/) Now what I need to know is, is this true? Please, if you are denied insurance coverage for Harvoni, call My Support Path. Then let me know. Thanks.
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I am working with support path. It depends on your income.
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My doctors' office just called and told me that they sent in my appeal for Harvoni. They Fed Ex it to my insurance company. They told me to be patient and give it a couple weeks. If not approved, more then likely I will be put on S/O which is ok with me. I just want to be cured soon. I will be patient. I called the lady at Gilead support group that is helping me, and gave her the info. She said she will keep checking my appeal for me.
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Lucinda, I did ask the lady with the support group that is helping me with my appeal about assistance. She said if you are denied harvoni, Gilead will offer assistance. It all depends on your income level. Have a great day Lucinda, and thank you for your support, and all of your great advice, and assistance, greatly appreciated. Oh, I am going to be in David Heitz's article tomorrow on hep c. www.healthline.com, type in hepatitis c.
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Fantastic - Please post it again when it is live. And let us know what happens with the appeal...
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I sure will Lucinda!
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Lynn K - If you are looking for your post, I moved it to: Relapsed on Sovaldi - Considering Harvoni
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I had a very hard time at work for TSA as a supervisor when I was on treatment for 14 months with peg and co-peg, over 10 years ago. I was getting wrote up for anything and everything., that wasn't even my fault, or stupid stuff.They gave everyone a Xmas bonus, but me. I always had vacation and sick time saved up. I tried to work most of the time. I know this was because they were scared that I had hep c, and probably thought they were going to get it from me. I had to resign and take a lot lower paying job. So, I kept my hep c in the closet, until recently, because I didn't want problems at work. Now I am ok with it. I am going to retire in January, and when I am cured I am going back into management. I will be 56 years old, and starting I fresh new life. I am so ready. I will be cured soon with Harvoni, if my appeal is approved. If not approved, S/O or S/R. I am so ready!
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Up date just got word from my Mayo clinic team BCBS of FL Denied me she said I didn't score a 3 on the Meta scale Not sure right term. She also said the other 4 patience were also DENIED!!! from mayo Florida. Now I start the dance with insurance company. I may try to find a Lawyer that will make BCBS tell how they know when one cell my liver decides to become cancers. And do they also tell stage one stage 2 cancer diagnosis patience you are not sick enough. Come back when your stage 3 or 4.
Notice how the insurance company's are not standing in front capitol hill screaming bloody murder about the price. They are trying to suppress this if not there would be a article in the papers in DC every other day condemning Gilead science for the rip off pricing demanding hearings. I think they don't want people to look at there denial process on all there clients.
Now the battle begins in earnest I am ready
Surf if you can surfer John
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Start here: http://www.mysupportpath.com/ (http://www.mysupportpath.com/)
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I highly recommend to anyone beginning Sovaldi or Harvoni to do an intake with www.mysupportpath.com. If you think your going to have any issue with insurance coverage, It will be one of the best proactive moves you will make.
Even before I went to my doctor and requested we start Harvoni, I did an intake with mysupportpath.com. After reading all of the issues people were having with insurance coverage and denials, I needed a back up.
The process with mysupportpath is a easy one. The intake staff are very friendly people and extremely professional. They call you back when they say they will! Be prepared and help them do their job for you. Get them copies of your insurance cards, income documentation, a copy of your doctors business card and anything else they may need.
My situation was a little bizarre. I got my first 28 days of Harvoni within 24 hours of my doctor prescribing it and six days after the F.D.A. approved it. The insurance company approved it and payed for it without issue. So, I advised mysupportpath that my insurance was covering it and I would not need their assistance.
Eight days into taking Harvoni the insurance company sends a denial of coverage letter.
After talking with my doctor regarding the filing an appeal for the denial, I contacted mysupportpath. I explained what had happened and requested that they re-open my case, and they did.
The doctors office along with mysupportpath went to work right away. myspportpath provided my doctors office with appeal letter guidelines. mysupportpath contacted my insurance carrier to verify coverage and to determine a support path program that I would qualify for. I was told that if my insurance denied it a second time that mysupportpath would be able to help me get Harvoni.
Even if my insurance company denied a second time and mysupportpath provided me with Harvoni, I would not have been done with my insurance company. There are six levels of appeal, the last being in a court of law in front of a judge. Stockholders are not going to dictate my health and wellbeing. I have fought this dragon for too long to be the victim of corporate greed.
Within 24 hours the insurance company's pharmaceutical review contractor contacted me via an automated robot call stating my medication had been approved. The most impersonal response I've ever received, but it was in my favor so I'm very thankful!
Use this resource, you will be glad you did!
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Thanks guy I though that my income was to much to use mysupportpath. I will check it out now and get started. That why this form is so good
I will surf Surfer John
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Hey Surf Till U Die,
Your welcome! Yes, this is a great forum and we are lucky to have Lucinda fighting with us.
Gilead doesn't need or want a whole lot of bad press regarding their pricing practices for life saving drugs that are priced so far out of reach for most Americans. I believe mysupportpath was established to show Gilead is making an effort to get patients covered by insurance.
Bottom line, mysupportpath is on your side so let them try to shake the coverage dollars out of your insurance carrier. It's going to work out for you one way or another, so hang in there. Make sure you provide them with copies of everything, letters of denials so they don't repeat what's already been done. They can pick up where things stand today.
The best of luck to you with this process. Keep us informed how it's progressing.
FYI. My professional background way back was in hospital patient financial services. I was an administrator at UCLA. I had staff that fought insurance claim denials and filed appeals. Positive outcomes for the patient can be achieved, it's all about dotting the I's, crossing the T's and meeting their approval standards with documentation. It shouldn't be this difficult, but it is.
Cheers,
Oneupsf
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Go to: http://www.healthline.com/health-news/harvoni-takes-sting-out-of-hepatitis-c-treatment-102614#1
This is the article from healthline.com by David Heitz that posted today: Harvoni Takes the Sting Out of Hepatitis C Treatment
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Go to: http://www.healthline.com/health-news/harvoni-takes-sting-out-of-hepatitis-c-treatment-102614#1
This is the article from healthline.com by David Heitz that posted today: Harvoni Takes the Sting Out of Hepatitis C Treatment
Dang, you are famous now!
Bucky
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Thanks Bucky, I just want to be cured, just like a lot of us. So tired of waiting, when the great meds are out now. I am so ready to start my treatment. Oh yea, I am between stage 1 and 2, just a little scarring, no cirrhosis. Thanks for clearing this all up for me, confused at first, until I researched it. My doctor and pharmacist thinks they can get me approved for harvoni, because I was a nonresponder. A lot of insurance companies are not educated on harvoni yet, because it is a new drug, and of course very expensive. They both told me to give it some time and be patient. I also am working with the Gilead support group. I am able to use the $5 co-pay for harvoni or Sovaldi. Maybe the insurance will they their guidelines. Especially if a lot of pressure is put on them. Have a great Sunday Bucky. Oh, thank you everyone for your support and great advice, greatly appreciated. You all have a great Sunday with your families.
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That is a good article and shows how insurance companies are calling some of the shots.
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It sure is Tess1971. Have a great Sunday.
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Excellent article John! Thank you.
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You are welcome Lucinda. I want all of us to be cured of this terrible disease.
I am calling my insurance today on my harvini appeal. I am going to tell them all of the severe symptoms I am having because of my chronic hep c disease. Just because I am between stage 1 and 2, with a little bit of scarring, doesn't mean I am not sick a lot. I was on peg and co-peg for 14 months, over 10 years ago, it really messed me up too. I haven't been myself after that long painful, and terrible treatment. I think it did a lot of damage to my body.
Express scripts denied my harvoni on the first day that my doctor sent my precription in to the pharmacist, on Fri., Oct. 17th. My appeal was faxed by my doctor on Thur., Oct. 23rd. I don't want this to drag out for a long time. I want to be on treatment and get cured of this terrible disease. We all have been waiting to long for new medicines that will cure us. I will keep you all posted on how long this appeal will take, and if it gets approved. You all have a great Monday, and a wonderful week.
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Hey Johnsshutts,
Make sure you do an intake with www.mysupportpath.com They will work with you, your docs and your insurance carrier in getting the appeal processes moving in the right direction. They are great people and their only goal is to get you Harvoni. It worked great for me and our stages are the same.
The best of luck!
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Thanks Oneupsf,
They are helping me. I called them last week.
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Hey Johnsshutts,
Great news! You'll have it soon, I'm sure.
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Hi John,
Keep the faith, don't give up and keep on looking for angles and tools to fight them with. What I've learned the past few months since my diagnosis is that this Beast is different in each of us. Our bodies react in different ways to this at times and we can be shoved in a box based on numbers. Stay strong, you have a path and a goal and you will get there! I'm looking forward to that post that says "I am approved" and even better "I am UD!!"
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Up date I just got my denial from BCBS in the letter they say Quote "Denied procedure Harvoni 90mg 400mg --- UP TO 4 TABLETS PER DAY" excuse me but WTH up to 4 per day. I am going down to my House Rep Bill Posse and office and ask them to help all the people that are getting denied.
I also talk to my Hepc team at Mayo Clinic yesterday they said they were file a appeal yesterday. I brought up mysupportpath and she said not yet if I get denied again the they said we go that rout. I have to trust them they are a transplant center.
Look for some surf John
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Just got a call from my doctor, my insurance denied Harvoni. They approved Solvoldi with interferon. No way am I doing that crazy treatment again. That stuff makes you nuts! My doctor wants me to start harvoni. They said Gilead will give it to me for free! That still remains to be seen, but hopefully in three weeks, I will get it in the mail. I am genotype 1 with Cirrhosis and failed two prior interferon/ribivirian and pegasys/ribiviaran trials about 14 years ago. Praying this new treatment works. They want me to do 24 weeks of Harvoni. Praise God! I'll let you all know how it goes.
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Hi John,
Sounds like you could use some surf today. You are doing everything right to get this fixed and get your approval. It's amazing how screwed up this powerful nation of ours is. Hey, let's not treat people because they aren't sick enough, maybe they can infect a few others who in turn infect a few others, and so on and so on. Apparently in your case the person who took the prescription in didn't listen and some how your one pill a day is now up to four pills a day, I didn't see who you have to get your meds through but I did call mine, it happened to be Express Scripts who then uses their other Company Accredo for certain medications, including Sovaldi cocktails and Harvoni. If you can possibly get through to a pharmacist there they may be able to correct the typo in your script and get it resubmitted for you, just an idea. I was able to speak to a pharmacist before I was approved by calling and asking a ton of medical questions like interactions that a normal call center person couldn't answer. I was curious about Harvoni and didn't know if I should wait for the FDA approval or just go with the S/O. I ended up choosing to stick with S/O because I got approval the day before Harvoni was approved by the FDA and I and didn't want to risk treatment starting right away.
Anyway stay on your path, find your surf spot and smile because you are going to get the medications and start to heal.
~Mel~
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Just got a call from my doctor, my insurance denied Harvoni. They approved Solvoldi with interferon. My doctor wants me to start harvoni. They said Gilead will give it to me for free! That still remains to be seen, but hopefully in three weeks, I will get it in the mail. I am genotype 1 with Cirrhosis and failed two prior interferon/ribivirian and pegasys/ribiviaran trials about 14 years ago. Praying this new treatment works. They want me to do 24 weeks of Harvoni. Praise God! I'll let you all know how it goes.
CONGRATS MIKEYMAN, that is excellent news for you!! May the healing force be with you through your journey
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Thanks Mel, I too was prescribed the S/O treatment just before Harvoni was approved on Oct 10. Too funny the insurance company approved a $90,000 Solvardi treatment but wanted me to do the Interferon with it instead of the Osylo. Harvoni is only $4,000 more than Solvardi by itself not sure how much the interferon goes for now days. It used to be around $1200 per month when I was doing it. The trial paid for it back then. I don't get it what is up with the insurance companies. I really hope Gilead really comes through with what they told my doctor. I don't want to get too excited until I get that first bottle of Harvoni on my doorstep. It seem to me that insurance companies would want to approve this as it is way cheaper than a liver transplant! Hopefully once folks start getting cured in mass, they will change their minds. My doctor believes Harvoni is the future of Hep C treatment. It is always rough being the first!
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Hi Mikey,
I totally get it but I had multiple personal reasons going on and I had to do something as fast as possible. Heck it took over two months and all kinds of hoops get to get S/O going and I need to get better! I am so sick of feeling like crap and I want my mind and my life back!
I will send some good vibes your way and pray for you that it the Harvoni is sitting and waiting on your doorstep soon.
~Mel~
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Mel, I was all ready to do the S/O as well, but when My insurance denied it, My doctor said lets go for the Harvoni. I said no problem with that! The S/O has a great cure rate as well. Way better than anything before it. I will send Great Vibes and Lots of Prayer your way!!!! I'll post regularly once I get started and let everyone know how it is going. How are you feeling on the S/O treatment?
Mikey
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Hi Mikey, I am doing ok I suppose. Today is a strange one for me, very tired from not enough sleep which always causing an avalanche for me. I am totally all over the place and can't function right. Brain is in 100 places at once. I have spent the last 24 hour on a binge organizing tossing and cleaning; can't take having chaos around me. I am stage 4 with cirrhosis so I was full of symptom Slight nausea and headache was new as well as the INTENSE itching.
Since I can't focus I will post this and write more later or tomorrow
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GOOD NEWS!!!
After being on Harvoni for 11 days the viral load went from 9,196,402 on 10/16/2014 to the results below. I'm sure by today it is most likely undetectable.
Huge Success!
HCV RNA RT-PCR, QT 73
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That's great news Oneupsf, congrats!
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Hi Mel, hang in there girl. It will all be worth it when it's over. When I did the peg/rib combo and regulations i/rib it was awful. I am not sure what stage my chirrosis is as I have not had a biopsy lately. I am symptom free at this point. Still have not heard yet when the harvoni is eta. Hopefully soon. I want this beast out of my body!
Prayers for healing your way.
Mikey
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Oneupsf and 73 to go!!!!!!!!!!!!
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GOOD NEWS!!!
After being on Harvoni for 11 days the viral load went from 9,196,402 on 10/16/2014 to the results below. I'm sure by today it is most likely undetectable.
Huge Success!
HCV RNA RT-PCR, QT 73
Congratulations! I'm on Harvoni too. In my third week and scheduled for blood tests next week. My doctor expects great results after just two weeks. Some go to 0 viral load from above 6 million it seems.
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I'm on Harvoni 6 days now. I can really feel it working and feel the difference in energy already. My sleep is not that good, some nights it's 7 hours some 5 or 6 so I hope that will improve over time.
Contrary to postings on this site you DO NOT need to be a certain stages of cirrhosis in order to get approval and especially if you are on a medicaid insurance. According to my blood tests and my ultrasound and catscan I'm not into fibrosis stage so I guess I'm a Zero? Though who knows. My viral load is pretty low and had been reducing over time and my enzymes have been improving too before the Harvoni began.
I have been taking Primrose oil for hot flashes but I'm told I can't take it, doesn't anyone know why?
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I'm on day 7 of Harvoni. HCV-1b, VL=2,000,000+ a couple of weeks ago, probably a lot less now, but won't take blood until week 4. Minimal fibrosis but am perimenopausal so I've started to see effects of HCV, especially extra-hepatic symptoms like lichen planus on the lips, rash on the hands and forearms, achy joints and general fatigue.
A year ago, a good doctor saw fluctuating AST/ALT levels and sought out the root cause. Probably got HCV with blood transfusions in the '60s.
I've noticed an almost immediate improvement in my overall health. I feel better, not achy anymore, and my lip is starting to heal.
The main side-effect I'm noticing is an uncomfortable stomach. It's not an ache, not nausea, and is placated with a cracker or bit of bread. Maybe a slight headache, but it could be sinus (hubby has a bad cold, so who knows).
I have a few questions:
1) The occurrence of the side effects don't seem to correlate with the time I take my pill. Are the side effects caused by the drug, or by the die-off of the virus?
2) Does Harvoni have a time-release administration mechanism?
3) Does the concentration of ledipasvir and sofosbuvir in my blood increase as I take more doses?
4) Once the viral load decreases to double digits (and the work of Harvoni is mostly complete) do the side effects continue?
5) Is there data on how fast the viral load decreases with the administration of Harvoni? (I'm a geeky engineer so I'm allowed to ask geeky questions).
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I'm on Harvoni 6 days now. I can really feel it working and feel the difference in energy already. My sleep is not that good, some nights it's 7 hours some 5 or 6 so I hope that will improve over time.
Contrary to postings on this site you DO NOT need to be a certain stages of cirrhosis in order to get approval and especially if you are on a medicaid insurance. According to my blood tests and my ultrasound and catscan I'm not into fibrosis stage so I guess I'm a Zero? Though who knows. My viral load is pretty low and had been reducing over time and my enzymes have been improving too before the Harvoni began.
I have been taking Primrose oil for hot flashes but I'm told I can't take it, doesn't anyone know why?
I have noticed some patients with no severity of liver damage getting Harvoni. Initially it was only severe cases, especially with Sovaldi/Olysio but they seem more lax now with Harvoni.
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Good questiions Harvoni User.
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I'm on day 7 of Harvoni. HCV-1b, VL=2,000,000+ a couple of weeks ago, probably a lot less now, but won't take blood until week 4. Minimal fibrosis but am perimenopausal so I've started to see effects of HCV, especially extra-hepatic symptoms like lichen planus on the lips, rash on the hands and forearms, achy joints and general fatigue.
A year ago, a good doctor saw fluctuating AST/ALT levels and sought out the root cause. Probably got HCV with blood transfusions in the '60s.
I've noticed an almost immediate improvement in my overall health. I feel better, not achy anymore, and my lip is starting to heal.
The main side-effect I'm noticing is an uncomfortable stomach. It's not an ache, not nausea, and is placated with a cracker or bit of bread. Maybe a slight headache, but it could be sinus (hubby has a bad cold, so who knows).
I have a few questions:
1) The occurrence of the side effects don't seem to correlate with the time I take my pill. Are the side effects caused by the drug, or by the die-off of the virus?
2) Does Harvoni have a time-release administration mechanism?
3) Does the concentration of ledipasvir and sofosbuvir in my blood increase as I take more doses?
4) Once the viral load decreases to double digits (and the work of Harvoni is mostly complete) do the side effects continue?
5) Is there data on how fast the viral load decreases with the administration of Harvoni? (I'm a geeky engineer so I'm allowed to ask geeky questions).
Harvoni User have you called Gilead regarding your questions? These are great questions. I would only assume most users are in their first 2 to 3 weeks of use and haven't been on it long enough to give feedback to some of your questions, unless their doctor's have given them some future projections. I'm on day 19 and side effects are minimal now. I am told the first 2 weeks Sovaldi which is the main ingredient of Harvoni has shown to decrease the viral load to double digits and some to 0. And I'm guessing side effects are caused by both the drug and the killing of the virus and the flushing out of the system. Every one is different and has different side effects, especially with liver damage. I am curious about question 2 and 3 and Gilead would probably know.
Bobby
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I'm on day 7 of Harvoni. HCV-1b, VL=2,000,000+ a couple of weeks ago, probably a lot less now, but won't take blood until week 4. Minimal fibrosis but am perimenopausal so I've started to see effects of HCV, especially extra-hepatic symptoms like lichen planus on the lips, rash on the hands and forearms, achy joints and general fatigue.
A year ago, a good doctor saw fluctuating AST/ALT levels and sought out the root cause. Probably got HCV with blood transfusions in the '60s.
I've noticed an almost immediate improvement in my overall health. I feel better, not achy anymore, and my lip is starting to heal.
The main side-effect I'm noticing is an uncomfortable stomach. It's not an ache, not nausea, and is placated with a cracker or bit of bread. Maybe a slight headache, but it could be sinus (hubby has a bad cold, so who knows).
I have a few questions:
1) The occurrence of the side effects don't seem to correlate with the time I take my pill. Are the side effects caused by the drug, or by the die-off of the virus?
2) Does Harvoni have a time-release administration mechanism?
3) Does the concentration of ledipasvir and sofosbuvir in my blood increase as I take more doses?
4) Once the viral load decreases to double digits (and the work of Harvoni is mostly complete) do the side effects continue?
5) Is there data on how fast the viral load decreases with the administration of Harvoni? (I'm a geeky engineer so I'm allowed to ask geeky questions).
Excellent Qs. As far as I know side effects will diminish and disappear altogether at this point or soon after. Am perimenopausal myself and on my sixth day. Doctor said not to take my primrose oil - may interfere with Harvoni, :-( too bad it helped with mood and hot flashes but I don't seem to be getting either (yet) so maybe Harvoni has something to do with it.
And as for side effects they definitely don't all correlate with taking the pill. Does anyone have a contact number for Harvoni ?
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Excellent Qs. As far as I know side effects will diminish and disappear altogether at this point or soon after. Am perimenopausal myself and on my sixth day. Doctor said not to take my primrose oil - may interfere with Harvoni, :-( too bad it helped with mood and hot flashes but I don't seem to be getting either (yet) so maybe Harvoni has something to do with it.
And as for side effects they definitely don't all correlate with taking the pill. Does anyone have a contact number for Harvoni ?
Called Gilead 800-445-3235 Option 2 then Option 3 or call their support path number 855-769-7284 for any questions regarding Harvoni.
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Called Gilead 800-445-3235 Option 2 then Option 3 or call their support path number 855-769-7284 for any questions regarding Harvoni.
THANK YOU!!!!
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My doctor uses a specialty pharmacy that provides a HepC mentor to all their HepC patients. They also have some PhD pharmacists on staff. Now that I know my questions are valid and I'm NOT crazy, I'll give my mentor a call tomorrow and see if she can help me find some answers. If that doesn't satisfy I'll call Gilead. Thanks for the info! Glad I joined and spoke up!
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Got a few answers from the Harvoni hotline (855-769-7284):
2) Does Harvoni have a time-release administration mechanism? No
3) Does the concentration of ledipasvir and sofosbuvir in my blood increase as I take more doses?
ledipasvir (90 mg) – peak concentration in blood is 4 – 4.5 hrs after administration, ½-life (time for concentration to reduce by ½) is 2 days
sofosbuvir (400 mg) – peak concentration in blood is 1 hr after administration, ½-life (time for concentration to reduce by ½) is ½ hour
The nurse I was speaking with said my other questions were related more to the patient data collected during trials and I would be better served by calling the Gilead line at 800-445 3235 Opt 2 Opt 3. No such luck. These folks seemed more concerned with the minimal side effects I was reporting than with answering my questions. All they had was the SVR12 data ...
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The nurse support line is advertised as 24/7 right on the web page.
I called Saturday morning and got a recording to call Mon-Fri during business hours.
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Gilead is giving people the run around. I noticed, like me, most of these posts about Harvoni are from patients WAITING to receive the meds based on some minor problem or excuse. Truth is Gilead is going to price gouge their products as will any competitors at the cost of many lives. Personally I feel action a little closer to drastic should be applied. After all Gilead is planning mass murder and you're reading this forum because you're going to be one of them. I did the Interferon, Ribo protocols twice and Victrelis but to no avail. I have lab work, ultra sounds, viral count 6.8 mil, MRI's going back to 2008 with "cirrhosis's diagnosis and now that's all not good enough, must jump through the FibroSure test hoop - which is not FDA approved for what that's worth. Somebody should reimburse all of us for the cost of all these years of labs and test the pharmacy's Walgreens, CVC, say are worthless. Isn't it amazing the pharmacies, doctors, labs, insurance company - Blue Cross's premiums all come out of my pocket FOR NOTHING in return.
Seems I not near death enough, course if you're too sick you won't be treated either. Good luck, you can always appeal and with the onslaught of all those coming it may take years to process you're paperwork.
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Hey Jweav2012,
First welcome, second this is total BS and I agree there is a runaround going on but not sure who the heck is behind it. I think they are all passing the buck around but meanwhile those that really need the treatment are struggling to get it. I am one of the "lucky" ones and have been on the S/O combo for 4-1/2 weeks so I got approved the day before Harvoni was approved. I really really feel your pain, what if I am one of the 10-12% that doesn't get cured with the 12 weeks of S/O that was approved? What will happen next to me? Who knows? Maybe I will have to go to India so I can get it for a $1.00 a pill instead of $1,000 a pill. Just all insane how this works, we pay for insurance and it's supposed to cover us when we are sick yet there is a huge whole that happens with the Insurance Companies and Drug Manufacturers and guess who's at the bottom of the whole? US!
I don't think Gilead is the holdup here because they want as many people on their medication as possible before the AbieV medication is approved. I think it's the insurance companies holding out and hoping that once the AbieV drug is out there will be competition and they prices will drop.
Please don't give up on fighting with these morons, you have to push it, we all have to push it. Everyone deserves the medication. Hell Gilead probably already made enough money this year already on Sovaldi alone to pay the national debt!
If you need someone you can vent to, PM me anytime, I will be happy to listen. I will pray these people get their heads out of their butts and get you on some medications to cure you ASAP. Then we all get to fight what the HEP C has done to our livers when we had the infection.
BTW my Dr did order that Fibro Test and Insurance refused to cover it so it's on me but it got me on the treatment so I guess it could be worse.
~Mel~
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Good old Obamacare, Hang in there, GOD DOESNT LIKE "UGLY"" "" just" willie g
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5 weeks on harvoni,doc called
HEP C is undetectable. wow the
med works fast.great feeling today!!!
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zippity doo dah daleb - what a wonderful day!
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Awesome news daleb! Just two weeks behind you. I do my first blood work Dec 12 . Hoping for the same!
Peace
Mikeyman
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good luck milkyman,im hoping and praying for
you.this needs to go away for eveyone.
thanks for reply
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I am currently frustrated. I was diagnosed a month and 1/2 ago, and I went to see an infectious disease specialist. This specialist told me that she would prescribe Harvoni and that there was a 97% chance this would be cured. She said her office would fight with the insurance company to approve this drug for me. I have GHI, with an Express Scripts rider. A week later the doctor called me and said the insurance company required that I get a liver biopsy(which was a terrible experience)...so another two weeks later I am told that I have been APPROVED for Harvoni treatment by my insurance. YAY....not so fast. Apparently there is a $17 thousand copay PER MONTH. I call MySupportPath and they tell me that the copay coupon is good for up to $23,675...but if my copay is 17k and I need to pay that for 12 weeks, my total copay cost is $51,000!!! So that means I will have to pay $27k out of pocket? Apparently now MySupportPath is working with my insurance to try to get this copay cost down...because if I have to come up with 27 thousand dollars I will be waiting for a loooong time to begin treatment. I am also terrified to begin my first months treatment only to run into financial issues when it is time for month two(and three). Has anyone experienced this nightmare with express scripts or their insurance carriers? I went from being very optimistic to getting a sense that this might not happen for me.
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wow Is GHI some Group Health Insurance from an employer?
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Yes...
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Have you tried going to Gilead's site to get their coupon/help to pay for treatment. It is worth a shot…….Many have done this with or without insurance. I considered it but fortunately my copays for specialty drugs is only $50 no matter.
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I have...I am currently waiting for them to call me back. They were going to reach out to the insurance company to try to get this cost down. They also told me there was the copay coupon, but that isn't worth enough to cover 51k dollars. They also mentioned there were some grants that may cover the remainder, but this all sounds like a terrible situation.
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Did you try www.mysupportpath.com for the $5 co-pay coupon? After that I am not sure where else at this time, but, will definitely ask around for you.
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I think you can also reach out to PAN for assistance with prescription co-pays,
http://www.panfoundation.org/ (http://www.panfoundation.org/)
Mel
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OK...update time:
After back and forth for a couple days, the copay coupon works and my 17thousand dollar copay(Express scripts) for my first 28 days is FIVE DOLLARS! YAY. But now the copay coupon only has about 7thousand and change left on it, and I still have two months of treatment to pay for(17 thousand per month). So It looks like I still need to come up with 27 thousand dollars somehow.
I don't know how I can begin treatment tomorrow knowing that in 28 days I will have to come up with about 10 thousand and then in 28 more days come up with 17 thousand. I cannot start treatment and have an interruption in medication. I have been calling the MySupportPath number all day for two days and I never get someone, I just stay on hold for 20 minutes at which point it forces me to leave a message...hang up and call back...ALL DAY. No one ever calls back and no one ever answers. I am in a holding pattern until I find some way to get the remainder covered.
Looking for advice..should I start taking the medication and hope over the next thirty days some miracle happens with MySupportPath? I am so exhausted.
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OK...update time:
After back and forth for a couple days, the copay coupon works and my 17thousand dollar copay(Express scripts) for my first 28 days is FIVE DOLLARS! YAY. But now the copay coupon only has about 7thousand and change left on it, and I still have two months of treatment to pay for(17 thousand per month). So It looks like I still need to come up with 27 thousand dollars somehow.
I don't know how I can begin treatment tomorrow knowing that in 28 days I will have to come up with about 10 thousand and then in 28 more days come up with 17 thousand. I cannot start treatment and have an interruption in medication. I have been calling the MySupportPath number all day for two days and I never get someone, I just stay on hold for 20 minutes at which point it forces me to leave a message...hang up and call back...ALL DAY. No one ever calls back and no one ever answers. I am in a holding pattern until I find some way to get the remainder covered.
Looking for advice..should I start taking the medication and hope over the next thirty days some miracle happens with MySupportPath? I am so exhausted.
Are you sure your insurance plan doesn't have a max out of pocket??
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My doctor wrote me a script for Harvoni back in October. Here it is December. UHC denied it because it's not on their formulary and they don't know if they will add it on their formulary. Not sure what to do as I can't afford $2k a pill. I am trying to go through Support Path at Gilead Sciences but they don't seem to call back. Very sick and disheartened.
Kel
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My doctor wrote me a script for Harvoni back in October. Here it is December. UHC denied it because it's not on their formulary and they don't know if they will add it on their formulary. Not sure what to do as I can't afford $2k a pill. I am trying to go through Support Path at Gilead Sciences but they don't seem to call back. Very sick and disheartened.
Kel
Kel,
United Healthcare denied it? I have United Healthcare as well. Does your insurance go through Express Scripts/Medco and then Accredo for specialty medications? If he wrote the prescription for Harvoni the day it was approved that may be your problem regardless I am on Harvoni after a battle and as of 12/5 and have United Healthcare.
Let me know and I may be able to give you some hints.
Mel
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Hi, Mel,
I have UHC and their RX is OptumRX. They say it's not on their formulary and they're not approving it. He probably wrote the script third or fourth week of October. Kel,
United Healthcare denied it? I have United Healthcare as well. Does your insurance go through Express Scripts/Medco and then Accredo for specialty medications? If he wrote the prescription for Harvoni the day it was approved that may be your problem regardless I am on Harvoni after a battle and as of 12/5 and have United Healthcare.
Let me know and I may be able to give you some hints.
Mel
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Kel,
I'm in the same boat... Got my prescription on 10/24 and have been fighting with BCBS ever since. I too contacted SupportPath and thought I had all that was needed but when they review my denial letters the wording on the letters was insufficient for them to make a decision to assist me so now they will file the appeal. I get all that I'm just so frustrated and disheartened by the red tape of the insurance co. I have been an RN for 38 years and have never encountered anything like this with any one of my patients. I have always been an advocate for health and now my ability to direct my own health has been completely taken out of my hands.. so now going on 2 months here I am back at the beginning starting this denial process all over...
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Well, you will be happy to hear that PAN approved copay assistance for my second month. I would have owed 9k in about 23 days, and I was worried. Now I am working with them to see if they can issue me an extra 10k which will apply to my 3rd and last month. With an extra 10k, my final month will cost me out of pocket, 7k....I am inquiring with my insurance what my Max Out Of Pocket is...then I will be calling PAF, which supposedly can supply 7,500 if you qualify.
I have the numbers for both PAN and PAF (MySupportPath gave them to me):
PAN: 866-316-7263
PAF: 866-512-3861
Good Luck..I am only 5 days into treatment and I feel great!
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Hi NYC,
Wow, so happy PAN helped you and glad you reached out to us for ideas! You actually got it approved quickly which is awesome. so so happy for you!
Month 3 will get figured out as well!
Mel~
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As an FYI I have been told that most insurance have Harvoni listed for their 2015 benefits since it was approved in October of 2014. BCBS happens to be one of them. You may have to wait until Jan 1 when the 2015 benefits go into effect.
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Just found out that PAN did approve the extra 10k, so they approved me for a total of 20k...unbelievable.
So now, month three still has $7500 left...so hopefully PAF will be able to make up the difference.
I just have to say, that we live in the greatest country, at the greatest time ever...I am very grateful.
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It is all falling together for you - great!
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I'm on day 25 of Harvoni. Authorization went pretty much as doctor said.. A little confusion at the beginning but I had my first script within 3-4 weeks of her script.
With optumrx insurance my monthly copay is 9.50.
Doc did want me on for 24 weeks but IBX personal choice only approved 12.
I thought my prior non responsiveness to Interferon would have had them allow 24 weeks.
Anyway, as for side effects.....minimal if anything. No headaches, no noticeable difference in sleeping pattern. Nothing.....except one thing I have going on that may have nothing to do with treatment and I haven't seen anything on it....Since about the time I started the harvoni my ear has been clogged like a sinus thing.
I'll see an ENT next week if needed and if it is attributed to the Harvoni, no big deal. This is nothing, especially compared to interferon and ribaviron.
Good luck to everyone on, or trying to get on, the meds. If anyone has a sinus thing going on, I'd like to hear about it.
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Hi Bl,
Welcome! Sounds like you are on your way! Happy to hear you don't have sides except maybe the ear thing. I have heard some rumbles about tinnitus (ear ringing) while in treatment before but not the clogged thing.
Hope all continues to go well and you are undetected soon and SVR when it's all over.
Take care,
Mel
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Finally a drug that will work . I have hep c geno 1-A and was treated with the best available 4 years ago and was a non responder. I had lymphoma at that time and did not know it. They removed my spleen and gave me a few rounds of chemo and as far as I know it is gone. My viral load went up to 22 million I think as a result of the chemo. It was at 7 million when I started the chemo. In the last couple of months I have had problems with constipation and have started hurting under my right rib cage. I had a lower GI and everything was good. I am once again in fear that the gears of the medical world will turn too slow. I went undiagnosed for 11.5 months with the lymphoma and almost died. It would take a month to see this specialist,a month to see that specialist,so on and so forth all of them saying that they did not know what was wrong with me. I just dont want a repeat of that and I am frustrated and at there mercy. My doctor says he has ordered the prescription for the Harvoni but the pharmacy says they have not received anything. I will continue to pursue this. wish me luck!
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hopefully you get it.cleared me up in 8 weeks
got luck[everyone who has this beast needs to try this drug]
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I call MySupportPath and they tell me that the copay coupon is good for up to $23,675...but if my copay is 17k and I need to pay that for 12 weeks, my total copay cost is $51,000!!!
When I called MySupportPath, they told me that for "cash-paying customers" (ie, those whose ins had refused to cover Harvoni), the cost to me was $32k per month, but they would give me a coupon for $23k per month
Are you sure that the $23,675 is the max amount of the coupon, and not the per-month limit?
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Hi apache when I was waiting for my insurance approval I got onto Gilead website there's forms to fill out for people with no insurance coverage they will pay for it I never had to submit the paperwork because thank god my insurance agreed n didn't fight me on it try that and good luck
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I am in NYC and have GHI (Emblem Health)-Express Script Insurance plan.
Does anyone knows a good specialist who have experience dealing with these insurances regarding Harvoni?
Thanks in advance.
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I have a specialist in Jersey though. :( Let me know if that works for you. I have your exact insurance. This specialist got me approved for Harvoni in record time, despite having no cirrhosis, and low VL.
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Hi, I take my last pill of Harvoni today of a 12 week course. I was undetected at 4 weeks. I will get all my labs done on Monday. I have been waking up at 5am and I have always slept late and long. I go back to bed for a couple hours after though. I feel like I have so much more energy and clear thinking! So happy. Thanks Gilead! I wish everyone the best and a cure after treatment.
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Thank You Harvoni_NYC:
I work for NYC municipal government. I was told that Express Scripts will include AbbVie’s Viekira Pak for patients with genotype 1, but not approving Harvoni.
Its good to know that its been approved in NJ.
Regards.
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Hi NYC
I have express scripts they will approve Harvoni under certain circumstances for example all GT 1a have to take ribavirin along with Viekira Pak while GT1b do not if they do not have cirrhosis. So if there is a reason you cannot take ribivirin or have advanced liver disease like cirrhosis with child score B or C you cannot take Viekira Pak so under those circumstances they will provide Harvoni.
But really Viekira is a good medicine and can cure your hep c so if there is no reason you can't take ribavirin you could always go with the Viekira
Best to you
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Dear Lynn K:
Thanks so much for information. Very useful for me.
Regards,
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I get my Harvoni from expresscrips. I have Blue Cross anthem and they are the preferred specialty pharmacy. I actually had to change from a different pharmacy who was ready to deliver it because my plan calls for expressscrips.
Just FYI and they are great...so far. 18 days and 150 more to go!
8)TPropane
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I also have express scripts and accredo speciality pharmacy they denied Harvoni initially and I had a stressful couple of weeks making multiple phone calls I finally found an email address after I posted to an article they wrote about reducing hep c relapse I ended up writing a long email explaining my health situating and expressing my great frustration dealing with their company they called me the next day and arranged delivery of Harvoni the next day.
expressrxhelp@express-scripts.com
You could try emailing them to directly appeal if you have a reason you can't take Viekira Pak with Ribaviron
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Thank you very much Lynn K.
I will certainly follow this advice.
Regards,
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I have BCBS HMO and they covered everything except for 150.00 per month. then I called Gilead and got copay assistance witch was around 23,000 per month. So they covered everything except for 5.00 per month. 28 day supply came in the mail Saturday so this is day two with no side effects. I have been waiting for something to come out that would work since I was a non responder to the rib. inter. I am so excited!!! Call Gilead for copay assistance. Its worth a shot.
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Hi, I am new at this forum and fairly new with diagnosis of Hep C and PBC. I'm having difficulty in finding knowledgeable and dedicated professionals for treatment. I was diagnosed early March and it took the Dr 3 months to send me the prescription (Harvoni). Now, trying to get it filled, I find I have to get it pre approved and I'm in a maze of conflicting information and unnecessary delays. Yesterday I was told by the Drs asst at UAB, AL that CVS...(Harvoni) would contact me regarding delivery of the medication. I emailed the asst to remind her that I was in Germany, wanting to get the medication through the US military hospital, and that the medication could not be sent to me because customs officials would confiscate. Her reply email said that if they could not send me the Harvoni, then they will not approve my prescription. Reading your posts, would you mind sharing the name of the woman on the FL Mayo Team that you praise? Mayo will be my next attempt at finding qualified and professional care. And, from the discussions, was your Harvoni ever approved; and the group considering legal action, I would be interested in participating as well. Thank you for any help you can offer, and sending prayers your way for health and many days of surfing.
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I"m new to this forum and was especially interested in some posts by johnsshutts. I too have GEHA and the cost of Harvoni that was quoted was a $500 copay for 84 pills. I have been reluctant to pursue treatment because I read pills cost almost $1000 each and I believed that GEHA only covered approximately 48%, which would still leave a big chunk from my pocket. As I read other posts, including additional ones by johnsschutts, I see that the insurance companies are giving patients a really hard time. The posts I read are from 2014. It is now October 2015 and I wonder if there are more positive updates with insurance companies and what is the actual cost of Harvoni for a retired Federal employee covered by GEHA.
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Let me clarify that the cost I quoted were those by johnsshutts and I found his quote extremely hopeful but it appears far off from the actual costs for the drug that is posted on the internet.
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Your best bet would be to contact your prescription drug provider and ask to be the current information
Good luck
Lynn
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My doctor is in the process of contacting them for approval but I did tell the doctor if it was cost prohibitive I would not move forward. So far a I have kept the Hep C under control with Milk Thistle and a careful diet and exercise. I know I'm playing a dangerous game but hopefully as new treatments come forward prices will drop.
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Nothing keeps hep c "under control" it is a slowly moving illness that each and every day does its damage to our livers. Milk thistle does little to nothing and a good diet only helps by keeping your weight in check so you don't develop fatty cells infiltrating your liver which can cause damage.
Are you in the US and have you checked with the web site my support path by the makers of Sovaldi Gilead ? They have a copay assistance program so you only have to pay $5 per prescription not familiar with your insurance but as long as it isn't Medicare Medicaid I believe you would be eligible
https://www.sovaldi.com/coupons?evo_source=MYSUPPORTPATH&_ga=1.3012400.1478436839.1408430403
"Eligible patients may pay no more than $5 per co-pay for SOVALDI"
Patients can call 1-855-7-MYPATH (1-855-769-7284)
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I am in the U.S. I did obtain the information on the co-pay but I'll need to call and see if I'm actually qualified. Although I am not on Medicare, I'm under 65, my health insurance is partially compensated by the Federal government since I am a retired Federal employee. Thanks for the information.
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BobB, it sounds like your doctor is proceeding to try to get your insurance to cover treatment. It might work out better than you think... there are so many variables, including your current condition (which is often what insurance companies go by on deciding on approval but not always). Once your doctor gets the response from insurance, you will know what to do next. You can appeal if they say no... if they say yes, you can find out what co-pay is and there are places to get assistance with that (as Lynn mentioned).
I think it's important to keep at it, be your own advocate and if possible, "find a way". Really, the best thing is to give it a go and then keep on trying. Sounds like you have a doctor in your corner. That always helps!
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I was treated for 24 weeks with Harvoni I was surprized about the copay assistance the pharmacy applied for it for me.
My insurance is through my employer a major employer in WA state insurance BCBS. My copay would have been $180 for the 24 week course but with copay assistance I only paid $30 and that was even with treating earlier last year with Sovaldi and Olysio for 12 weeks only paid $15 dollars for Sovaldi.
What is your genotype? Will you be treating with Sovaldi and Ribavirin as Sovaldi is not taken alone? How many weeks are you looking at?
Best to you
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Bob, I have had hep c for over 30 years, and am very physically fit, eat right, don't drink, etc.... And my liver is in good shape with good numbers. However, hep c does a lot more than just attack your liver. Fatigue, joint pain, memory fog and so on. According to the doctors my liver was in perfect shape, but I could barely walk to the coffee pot in the mornings and lift a cup of coffee. I have 13 days left of Harvoni and my quality of life has drastically improved. If you can get rid of this dreadful disease...do it...don't wait. This disease is slow and silent,,,but is attacking you every day in ways you don't even know. If you get denied through your insurance appeal, and keep appealing until you get the meds. Good luck
Scout
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I am hoping this all works out and I can rid myself of the Hep C. I appreciate the advice and support from all of you. I'll update my posts and progress as I proceed and hopefully this story will have a happy ending.
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Hi BobB. :) Wear that appeal process out! I also have a F1-F2 fibrosis score. It took three denials and four months to get my case in front of an independent review organization. They overturned by insurance's denials and I started Harvoni on Sept. 15th.
It sounds like your doctor is being helpful. That's a huge plus!
But keep this in your back pocket - your only response to a denial is "what's the next level of appeal?" At some point you may have to advocate for yourself.
You'll get your medication. And man is it worth it. I'm just over 3 weeks into a 12 week course of treatment and I haven't felt this good in too many years to count. "Eye on the prize" as someone once told me. ;)
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Good luck Bob!
Congrats on getting on treatment and smooth sailing for 3 weeks way to go on persevering and fighting the system!
Wishing you an easy treatment and SVR forever!
Yes indeed eye on the prize!
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Else, I'm hoping I won't have to do battle with the insurance company, GEHA, but what reasons were you given for your initial denials by your insurance company?
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My treatment was deemed "not medically necessary". They say they base their guidelines on the following link (which you should read if you haven't already!).http://hcvguidelines.org/full-report/when-and-whom-initiate-hcv-therapy (http://hcvguidelines.org/full-report/when-and-whom-initiate-hcv-therapy)
Actually they don't. They cherry-pick. So supposedly F1-F2 was not advanced enough fibrosis to require treatment.
They also neglect a segment of the HCV guidelines that are considered so important that they are yellow-highlighted by the organization that maintains the site:
Recommendations for when and in whom to initiate treatment
Treatment is recommended for all patients with chronic HCV infection, except those with short life expectancies owing to comorbid conditions.
That's means you and me, Bob. :) You just need to make sure that whoever is reviewing your case gets a copy of the pertinent areas of the HCV guidelines.
And it also may mean waiting until it gets in front of a doctor who isn't on the payroll of your insurance company. As in an "independent" or "external" review. Not for sure, but it might.
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Else, thanks for the feedback and the link. This is really helpful. I have an appointment with my doctor on October 22, and this will be my first major step toward getting treatment. I have a feeling the road will be bumpy but your information should hopefully minimize the bumps.
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Just took my first pill..Harvoni...One down and 83 to go....
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Just took my first pill..Harvoni...One down and 83 to go....
Congrats okiemagic! You are on your way! :)
kim
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Okiemajic, did you have a difficult time getting the Harvoni?
Good luck on your journey!
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No problem getting it from the VA....Kinda surprised really since I'm F2 with good and stable liver testing results....Diagnosed 12 years ago but been laying back since waiting for a safer treatment......
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Good to hear and I really hope you rid yourself of the Hep C. I'm on my way to hopefully getting it prescribed and although I have been symptom free, I feel like a walking time bomb. I'm glad the VA didn't give you a hard time. One thumbs up for them.
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Thanks..I understand they have been giving a lot of vets a hard time of late in getting the drug but apparently they very recently got another big block grant from Uncle Sam's coffers and are loosening up a bit...Good timing for me I guess..Hope others are as lucky.....
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Started Generic Harvoni January 23rd 2016 at 8am. Today will be my 5th day. Side effects have been tiredness and headache right above my left eye. Only took an aspirin once many hours after taking the medicine. Very tolerable side effects. I was having trouble sleeping, so for the first time I went to the Gym early afternoon and slept well last night. I was denied treatment by KAISER Permanente as I am Stage 2 Fibrosis and you must be stage 3 or higher. I was very blessed to find a Man in Australia who helped me attain the medicine. I was unable to travel. I have a bad back and two family members who are sick. A wonderful Man indeed. Ok, a little background. I worked in the Medical Field for 28 years. Within the first six months I had an accident. I tried to remove a bloody blade from the scalpel handle and slipped, cutting my finger pretty bad. This was back in 1987. Six months later I still complained of fatigue but no one knew back then, so life went on but I always struggled with tiredness. I'm a high energy person by nature. Fifteen years later the fatigue became a real issue and by default Doctor concluded I was depressed. All the positive thinking was not working so I started to look at the numbers (blood work). I knew nothing but I can read and my ALT numbers better than doubled within a month
and thank God a Doctor filling in for my Primary checked for Hepatitis C, hence my journey began. After researching all the options I new interferon was not for me. Then I found another Wonderful Man, Lloyd Wright (you can find him on the Web) who sustained me with a natural approach, primarily NAT CELL THYMUS, up to the present.
I am so excited about the present and wanted to share, maybe help someone with my story. The following are my stats. Thanks for listening!
Female: 57 yrs old
Diagnosed: 2002
Genotype: 1a
ALT: within range
AST: slightly high
Viral Count: 7 million
I stopped drinking one year after being diagnosed (was in denial)
I have a history of formal excercise since my Thirties
Side note: In the past, my eyes were the whitest after a workout. Since taking the Harvoni, my eyes are grey looking. I think the Harvoni is definitely in attack mode!
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I forgot to mention as of April this year, no one in Australia will be denied Treatment. You have options like I found out. It will be years before people like you and I in the US will be granted therapy regardless of Fibrosis Stage. The younger we are, the more able to fight the disease. I couldn't wait any longer. Hope this helps ❤️❤️❤️
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Best of luck to you, Rocket! Do you have a doctor here in the U.S. monitoring your lab work? Keep us posted on your progress.
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Sorry, one more tidbit. My KAISER Permanente Doctor made it clear he was not treating me (liability/scared) but would run my blood work for the entire 3 months. If my Viral Count had been under 6 million, I would have only needed 2 months treatment.
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Else, so fantastic! I am so thrilled for you. Crying now. Honestly, I didn't have it in me to fight the denials. The back pain is constant and my husband is not well but you did it! You did it! The best news ever! How is your energy level? My back takes so much out of me - the hope is getting rid of the Virus I will be able to tolerate the pain better. What insurance do you have? I hope people read your post!!!!
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Thanks, Rocket. I still have one more blood test until I heave a sigh of relief. The 12 wk post-treatment test. I don't blame you for going generic/overseas. I was very close to doing that myself. My insurance is Premera Blue Cross. Actually, they are more "generous" than a lot of plans, allowing a F2 fibrosis score to obtain treatment. Many plans are F3 or even F4.
That being said, even the broader coverage was no help since I had a prescribing physician's office that was unwilling or unable to submit documentation necessary for medication approval. By the time I took the appeals process into my own hands, I was at my wit's end. Fortunately, my insurance company is extremely competent and was able to give me a copy of everything that had been submitted to them by my doctor's office. That's how I was able to find out just how much critical info had been omitted from both the "prior approval" process and the first appeal (despite assurances to the contrary - which is a polite way of saying my doctor's office lied to me repeatedly.)
Anyway, the denials were overturned by an external review board. Sad that the process had to be so unnecessarily stressful and convoluted. Yes, my energy level is better. I finished a 12wk course of treatment on Dec. 7th. The last couple of weeks have been kinda hard. I felt GREAT on treatment, despite the occasional headache. As someone posted elsewhere, being cured doesn't automatically mean you're healed. Give yourself time.
Best to you! :)
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Else, I believe that unfortunately many of the reasons people are not getting approved for the treatment is exactly what you experienced, incompetance of the patients doctors office. I had express scripts/ with BCBS...with scores of F-0 and excellent liver scores. The difference? My doctor had a dedicated team just for submitting the application for approval. I was approved within 2 weeks! I asked them how it was possible,,,and they said literally it is the initial application that is detrimental. My joint issues and fatigue were so bad that my quality of life was horrid, and they focused on just that,,,my quality of life. I got my post 12 week tests back...undetected and I am feeling great. My joint pain is all but gone and the fatigu has been improving every day. It's just horrible that medical professionals don't understand how to properly submit paperwork and then outright lie about the process. We are not ordering hot water heaters, we are trying to get life saving medication and it pisses me off that nurses and doctors (not all) don't treat the requests as "life saving" medicine that impact our quality of life on a daily basis.
Scout
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Rocket Girl,
Welcome to the gang. I have had numerous conversations with Lloyd. I conferred with him very early on. I had my own source for Natcell and other protocols, however, Lloyd always was there to help. He also helped Pamela Anderson and it gave him some celebrity status for awhile. I too stayed clear of Peg/riba etc. I was even entered into a study that I declined. The young hepatologist got angry with me for refusal and told me I would be lucky to see my 50th birthday. So I ran a full marathon at 51 years. I went the alternative route and actually got my numbers so low that I got cocky (never get cocky with hep C...right?). I did have some very rough patches along the way. Anyway I am now 60 years old and cleared 12 week SVR (closer to 11 weeks).
Congrats on getting the meds. Harvoni is the best medical achievement since penicillin. Because you are treatment naive, you will clear fast. God bless you and keep the faith...go run a marathon :) :) :).
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Beto....your numbers are looking great
Scout
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Thanks scout...let's hope they hold...peace
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So I ran a full marathon at 51 years.
;D ;D ;D You're my hero, Beto!
Scout, I'm so glad you had the team that you did! I hope you keep posting about the importance of competence in a doctor's office.
Here's more info worth knowing - when I went into my hepatologist's office for my 4wk labs the nurse said she was happy they got approval of Harvoni for me ( >:( >:( are you kidding me??? >:( >:( ) because they weren't able to do that anymore.
I asked if it was because Gilead had pulled their patient support program for people who had insurance and she said yes!
The implications of her comments are horrifying. Here's one of the biggest liver centers on the west coast and they're telling new patients that Harvoni is unobtainable. This is not true. However, Harvoni is not obtainable using their current protocol which is "two denials then apply to a pharmaceutical company for funding." Rather than change their approach to PA's, they changed preferred medication. AbbVie Pharmaceuticals still has a patient support program for Viekira Pak.
So that's what works best... for their business model. It's sickening.
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Beto, thanks for the welcome! Having some trouble navigating the forum, so this message may be redundant, take two. I was told I would die if I did not accept treatment, so I know what you mean. Crazy. Happy to hear you know Lloyd. Wonderful man! A Marathon, wow! I run a treadmill, lol. Well, I sort of lay on it with both arms, but I do it, almost every day. I have a bad back. My arms however, have never looked better as they take the brunt of it. Ha. So glad I found this Forum. I think you're all terrific ❤️❤️❤️
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Hey Beto, Small world dude. After refusing interferon treatment My research led me to HEPCFREE website. Had several conversations with Lloyd as well as his staff on a regular basis , as well as internet orders and such. I believe it was back in 1989. Went and met Him when He came to Houston years ago, used his protocol as a basis for My naturopathic regimen for years. Nice guy and a lot of info.! Read his books too. The Yellow Eyes on the website and cover of the book still creeps Me out to this day!
BTW Rocket Girl , Welcome to the crazy train. Grab a seat and hold on. Check out all the normal and not so normal Hepper around the forums. Jump right on in with both feet. Great place to become knowledgable. Info. abounds. If You don't see it, ask away!!! ;D ;D ;D ;D
Else & Scout, How are You guys doing.?
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I am doing great Tommy, it's odd living a hep free life. I still don't think I am fully adjusted to it, but I am getting there...how are you?
Scout
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Yo Tommy! It's been a rocky couple of weeks. It's really hard not to associate feeling crappy with relapsing. 4 weeks and change 'til my 12 wk EOT labs. Maybe I pushed myself too much early this month? I dunno. I was feeling great.
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Tommy,
Is a small world of hep C indeed. I hope we can all exchange stories someday at Bree's house or in Texas (my son just moved there). Yes the Lloyd Wright books...those yellow eyes on the cover gave me the hebbie-jeebies too.
Rocket Girl, Else
That was nine years ago that a did the marathon and it took me 5 hours so don't give me too much credit. I think my point was, if you have or have had HCV for years and are kicking around, you are probably ornery and aint nobody gonna tell you that you are not gonna make it if you don't rank and file with their belief system. Just tell us we can't and see what happens...am I right?
Lloyd Wright took matters into his own hands and cured himself. A rare feat.
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Scout, Good to hear. Hope it keeps going good for You! Just ignore it and the adjustment will come. Automatically. Been doing pretty good over all. I have some bad days. But, lately the good days outnumber the bad. Still have quite a bit of back and neck pain, been going to Chiro. & Massuese. Today is the first day I have had a bad headache. Not a Migraine though, thank God.
Glad to hear from You and You are doing well. How about the smoking? I got it back down to two packs a week lately. Tommy
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Else, Sounds like You need to rest up a bit & quit pushing so hard. These old restoration projects take time You know. Is it a bug or Tx. related You think? Keep Your chin up and Your face into the Sun. Hope You get to feeling better.
Let us not refer to the "R" word. After reading several posts and feeling crappy Myself , My imagination is running rampant at the moment. Good thoughts, Good thoughts!
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Tommy, I really am working on the smoking thing but dammmmm it's tough! I also happen to be a Pepsi addict. I am surprised that I weigh 140 instead of 240 with as much pop as I drink. Must have something to do with the 15,000 to 20,000 steps I average each shift at work. Gonna hit the big 50 this year, and my goal is to be Pepsi and Marlboro free before that happens.
Scout
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Anyone heard from Cal????
Scout
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. . . if you have or have had HCV for years and are kicking around, you are probably ornery and aint nobody gonna tell you that you are not gonna make it if you don't rank and file with their belief system. Just tell us we can't and see what happens...am I right?
Yes, beto, you're right. Oncologists have known this for decades -- on average, compliant patients die quickest, whereas the PITA keeps on going.
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Yes, beto, you're right. Oncologists have known this for decades -- on average, compliant patients die quickest, whereas the PITA keeps on going.
Uh-oh. Apparently I'm going to live forever. :o
My apologies, Tommy. That was lame of me for sharing my obsessive worrying. You're fine 'n hepfree. I don't know what the heck is up with me. Harvoni made me feel great so it's hard for me to attribute it to tx.
Scout, I think about Cal every time I'm on here. :(
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Harvoni made me feel so good, I have to remind myself not to get nostalgic :(
Yeah, I think about Cal, Marianne, SuperMom, Dennis . . . .
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Cal...we all miss you
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Seems to be a few MIAs for sure. I know Call had skyped with Marianne a while back. I hope both of them are getting rested up and feeling better! :(
Beto, just noticed My typo. The year should have been 1998 not 1989! How You been lately?
Else, Don't worry about it. The seed of doubt was there all along. I just have not said anything about it. The thought has been bouncing around in the back of My head for a while! :-[
Scout, Keep pluggin. I don't know about the Pepsi jones, but quitting all of My other crutches seemed quite a bit easier than the smoking!
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Today will be day 6. So far so good. Headaches not so bad but tired. Do most people feel great after clearing the virus? That's my expectation.
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For a lot of us, there was an adjustment period while the body got used to being without the medicine. I'm now nearly 4 months past the last pill and have been noticing more and more improvements. It's exciting to discover that a lot of things I had attributed to old age were actually the result of Hep C, so I definitely feel younger!
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Gnatcatcher
thanks for responding. do you think we need to be on medicine longer. I hear what your saying it just doesn't make sense, but I guess that's the way it is. Harvoni is my first and only therapy. I didn't expect to feel this decent until completion. that made sense to me, but I sure appreciate your words. I'm so happy your feeling better after four months. how were you feeling the last four months to give me an idea
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No, being on Harvoni longer would just postpone the adjustment period (if you end up having one). Your immune system has been through a lot, first trying to get rid of HCV while doing all its regular duties, then being confused by the Harvoni coming in and getting rid of a huge quantity of HCV, then being newly confused when there's no more Harvoni and the big job of trying to get rid of HCV is no longer there. "Empty nest syndrome" :)
I had a really easy time on Harvoni. I even had the "Harvoni High" -- I had so much MORE energy during treatment that my fatigue came once there was no more Harvoni producing that extra energy. (Post-Tx fatigue was still a lot less than pre-Tx fatigue.) My immune system gradually readjusted, so I began sleeping better, and by now I'm sleeping MUCH better than I had in many decades.
Are you drinking plenty of fluids? Most of those who have had headaches on Harvoni found that drinking enough water made a difference. (I had a few headaches during my 12 weeks of Harvoni, but no more than I usually would during 12 weeks, and no more intense. I drank about 2 cups/day more water during treatment, because Harvoni seemed to need it so all the dead HCV could be flushed out.) The general rule holds: if your urine is pale yellow or nearly clear, you are getting enough water.
Gnatty
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I had a really easy time on Harvoni. I even had the "Harvoni High" -- I had so much MORE energy during treatment that my fatigue came once there was no more Harvoni producing that extra energy. (Post-Tx fatigue was still a lot less than pre-Tx fatigue.) My immune system gradually readjusted, so I began sleeping better, and by now I'm sleeping MUCH better than I had in many decades.
Are you drinking plenty of fluids? Most of those who have had headaches on Harvoni found that drinking enough water made a difference. (I had a few headaches during my 12 weeks of Harvoni, but no more than I usually would during 12 weeks, and no more intense. I drank about 2 cups/day more water during treatment, because Harvoni seemed to need it so all the dead HCV could be flushed out.) The general rule holds: if your urine is pale yellow or nearly clear, you are getting enough water.
Gnatty
Hi Rocket - this sums up my experience as well. Except I'm only 8 weeks post-treatment so I guess I'm still readjusting. The vagaries of the immune system are beyond my understanding. But it makes sense that it would need to find a new equilibrium after clearing a decades-long viral infection.
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Gnatty & Else
Thanks so much. It makes sense the way you explained it. I do feel better on the medicine and more relaxed. Touch of Insomnia but the sleep I do get is sound. And the headaches are mild to none. Only took one aspirin, I think the second day- that's it. We're gonna beat this thing, right you guys. We're gonna be great!
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Rocket, here's wishing you really nice dreams (many of us on Harvoni had them).
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thanks gnatcatcher!
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Here's one for you guys. I can't believe this. Remember my first post I commented I can read. Well, I'm getting excited about the first round of labs in three weeks. I've been on Generic Harvoni one week today. So, I was double checking all the paperwork from KAISER PERMANENTE and my Doctor, who really isn't a doctor but a Physicians Assistant. These days Hepatitis C isn't as intriguing as it use to be. One never sees a Liver Doctor, it's usually a P.A., at least with KAISER in Portland, Oregon. Anyway, READING all the paperwork I come to find the doctor never ordered the PCR-RNA Viral Test. The only blood work ordered was general, useless tests. Once again, MONEY. It's always BLOODY MONEY and I purchased my own medicine. How cheap can you be and he was soooo happy for me and stated he was a patient advocate. So I call the doctors office to tell them what's going on and they will get back to me. First phone call no good, so they are going to have someone else call me back. Second phone call, more of the same, however, with a Southern Accent. I love an accent
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The end of my post got cut off. Anyway, I forgot where I left off. I am so angry and hurt. There was a third call but I missed it. We have a stray cat that sleeps under our house and I was bringing him some food. I missed the call by 5 minutes. The message said to call Monday morning and ask for my Southern friend. Could not tell by her voice if they will approve the test. Plan B, I will find a reputable Lab to run my work and pay for it. But the story will not end there. SOCIAL MEDIA is a wonderful, powerful thing!
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Hello, I am starting harvoni 2/12/2016. I am 25 years old. I hated drugs with a passion because that was always what tore my "family" apart, we'll one day I was weak. I got mixed up into some stuff with my parents and then when my dad died I lost it. I did a fair share of partying but I finally cleaned my act up a few years ago. My step father is who infected me. I had to of been infected 4-5 years ago. I have noticed things about myself change, physically and mentally. .. of course I can't say it's the Hep for sure... I have great insurance through my job, BCBS. I just got the call last week I was approved for Harvoni. My viral load isn't too high, other labs elevated slightly. ( I see all on here who has had to wait many years, I am sorry for that) I am nervous. .. swallowing my pride. .scared...of the unknown? I have support in some ways, in other ways I dont...my wife (I am a married lesbian) trys to understand.. what should I expect starting this treatment? What are the possible bad and good side effects? Any pointers? I really appreciate any and all who take the time to read, respond, both or one. If anyone would like I can keep an update throughout treatment. I have really turned my life around. I am an amazing person today. This is truly a blessing, this I realize. Thanks again for your time.. Xo
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Expect to feel good, Ty! Seriously. Within a week or so. I'm glad you got diagnosed and obtained treatment. You have a long Hep C free life ahead of you.
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TyNessa, welcome and congratulations on getting covered without any hassle. Almost everyone is nervous starting a new medicine, but most people have an easy time on Harvoni. Your bottle will come with printed material that lists the five common side effects, but note that only a small percent of people experience them. It doesn't mention that quite a few of us experienced the good side effect of extra energy.
It's best to take the pill at the same time each day. Gilead stresses keeping the pills in the original bottle (my PA stressed it, too), so I wrote in a log each time I took the pill. Be sure to drink plenty of fluids and to get regular exercise. (I wrote those in my log, too, and noted anything that could be a side effect, although they were all very minor and intermittent.)
I hope you'll have as easy a time as I did, and I look forward to your updates.
Gnatty
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Thank you so much for the quick responses. Just reading them gave me hope and lifted a little weight. I will update with treatment results/side effects and etc. More responses are welcome! I wish the best for others in my position as well as trying to get approved or staying cured.
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Rocket Girl, sorry your PA dropped the ball. (A PA supervised my treatment, too, but she was actually more thorough and less forgetful than my hepatologist.) It's helpful to get a PCR RNA test after 4 weeks of treatment, but it's not mandatory. We have a forum member (Tommy) who took a 4-week PCR RNA test, but his lab lost it, so neither Tommy nor his doctor ever got that result. Even worse, the lab billed Tommy for the test it lost! Anyway, Harvoni killed Tommy's HCV, and the all-important PCR RNA test given 12 weeks after treatment ends showed that Tommy is cured.
Best of luck with the rest of your treatment.
Gnatty
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TyNessa, Welcome to the crazy train. Grab a seat and hang on. It's like a runaway train. You want to look away , but You just have to watch. No choice really, Your here! That is what matters. Glad You could be with us , sorry for the circumstances. You will find an eclectic bunch here on the forums. I was pretty much a poster child for ways to contract Hep C, except a blood transfusion. Live and laugh. Try not to stress over the labs and outcome. Although I had a rough go of it, I am in the Minority who did. Most have breezed through Tx. with ease and minimal sides! Eat well, hydrate, take care of Yourself. Oh yeah, find humor in the things that You experience and laugh Your ass off! Trust Me, it helps.
How long is Your Tx,? 8-12-or 24 weeks. Harvoni by it self ? Check out the forums and update us with Your progress as You go. Again. Welcome and may Your journey be pleasant and You troubles few!
I NEVER MAKE THE SAME MISTAKE TWICE! I MAKE IT FIVE OR SIX TIMES JUST TO MAKE SURE!
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Welcome TyNessa. And congrats on starting (or soon to start) Harvoni treatment! :) Many of us experienced the "Harvoni High" while on treatment - heightened energy, optimism, good mood. I did not have any negative side effects from harvoni. I had ribavirin included (because I was genotype 3a), and that caused me some problems. But the Harvoni was all good. Sit back and enjoy the ride. :)
kim
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Rocket Girl , It can get very annoying to say the least when You get the shaft. You pay and You expect to get results , but get caught up in the B.S. that is the system! It does little good to stress over it. All it does is cause Blood pressure spikes and headaches. I don't need either!LOL! It is nice to have the results during treatment for peace of mind as well as to know what is going on , The main prize is EOT results, EOT plus 12 weeks, and EOT plus 24 weeks. The stress of waiting is offset by the euphoria experience when You get the first UNDETECTED/NOT DETECTED results. It's like walking on cloud nine I tell you.! 8) 8) 8) 8) 8) 8)
Glad things are going good for You. Keep Your chin up and smooth sailing!
DISEASE:IDIOTITIS! CAUSES THE BRAIN TO SHUT DOWN AND THE MOUTH TO KEEP TALKING. THOUSANDS AFFECTED. MIGHT BE CONTAGIOUS. BEST DEFENSE : SLAP AND RUN!
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Tommy, it puts a smile on my face seeing your post! ;D 8) ;D
Newcomers, meet Tommy. Lead conductor of the crazy train. I hear he gives dance lessons too. Was it the conga line or the 'gator - I can't recall. 8)
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Hey guys! Recieved my first bottle today via UPS. I am so nervous, of course. The questions I asked the nurse of the phone she had no answers for. I know this is a toss up, side effects or none... My huge question is should I start 7pm tonight or 7 am tomorrow.. I worry..which would be worse side effects in the evening or at work? I want to do what's best and I know there is probably no correct answer as everybody is different. .. but if anybody has any pointers ...and input I would appreciate it. Starting with 8 weeks... Geno 1...
It's so lovely read all of your posts.
Nice "meeting you all...
Rocket girl stay strong and don't give up.
Everyone stay strong
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Hi, TyNessa. If you guess wrong, it is possible to adjust the time gradually to something that works better. Quite a few people on these forums have done so, usually adjusting by not more than 2 hours per day, so it does take about a week to adjust by 12 hours. Remember that most people don't have side effects. Those who got headaches usually found that drinking more water helped. Here's hoping everything goes smoothly for you.
Gnatty
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Tynessa,
Close your eyes and jump in. Take in the view for the duration. This is exciting stuff and you are going to be OK. peace
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Started at 7pm EST tonight... 42 mins in wish me luck! I will do the same. Thanks for the replies.
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luck and good juju coming your way
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Started at 7pm EST tonight... 42 mins in wish me luck! I will do the same. Thanks for the replies.
Good luck TyNessa! You got this! :)
kim
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Ty, Got Your message. The forums are a great place to get info., ask questions , get educated, and vent when needed. Jump on in the water is fine, Your are in good company here. Here is to a good Tx, for You. ;D
MY DIET PLAN! MAKE EVERYONE CUPCAKES! THE FATTER THEY GET THE THINNER I LOOK! ;D ;D ;D ;D ;D
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Best of luck, Slats1056 cupcakes await you ! :D :D
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Hi all, I can finally post something on this topic as I will be starting Harvoni SOON. Have a question re: coffee/caffeine -- I'm thinking I should take the pill at night since coffee is the only thing that keeps me functional during the day due to extreme fatigue, usually 2-4 cups/day. Has anyone been told not to drink coffee or caffeine while on this med, or avoid it at certain times? Thanks and I'm looking forward to getting on this train! FT
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FT, I took mine usually 5:30-6:30 AM every day with a liter of water. usually had another liter by 7:00 AM. Also had a glass (8-12 oz.) of juice. I like strong coffee. At work by 7:00 AM another 1/2 liter of water on My desk to sip. Then had 3-6 cups of coffee. I personally did not have any problems during the first half of the day usually. Most of My Sx,s were afternoon and evening. Except the Migraines which would come at any given time of the day or night. I 'm a big ole' boy so I had 5-6 liter of water minimum H2O every day. Plus coffee, juice , etc. Staying hydrated with good old H2O is well advised. You also get fluids in the foods You consume.
KNOWLEDGE IS KNOWING A TOMATOE IS A FRUIT! WISDOM IS NOT PUUTING IT IN A FRUIT SALAD! ;D ;D ;D ;D ;D ;D
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Slats1056, your humor is so appreciated! So sounds like coffee was not an issue or something to avoid, which I am very glad to hear. Take away my coffee and I am pretty much a zombie these days. Hoping that will change in the near future! FT
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Hey FT,
I love my coffee in the morning and did not give it up for TX. As an aside, there is a lot written about positive effect of Coffee on the liver. Regardless, it is one of life's simple pleasures (well and vices). Does not sound like you are over doing it anyway. I wake up like this :( then have my coffee ;D. all good far as I'm concerned.
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LOL! Yes, I do think when the saying came about that beer/wine/etc. was referred to as "the nectar of the Gods", they really meant coffee! I was so glad to read the news re: coffee appearing to be good to retard liver fibrosis. When did you take your miracle pill -- day or night? Thanks, FT
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As an aside, there is a lot written about positive effect of Coffee on the liver.
It's true, FT. Don't sweat the coffee. And no need to separate the coffee from when you take your Harvoni. All things in moderation, though. With rare exceptions, I don't drink it past noon so I don't end up having to deal with insomnia.
But water is really your friend with Harvoni. Lots of it! I found it very effective in eliminating the occasional Harvoni headache. I'd start your day with a 8oz guzzle, if not more.
I also found Harvoni very "activating" for lack of a better word. So 10:00 a.m. in the morning was my medication schedule. That way I could enjoy all that extra energy! I don't think a p.m. dosing schedule would have worked for me.
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Interesting re: the "activation" aspect..... Lord knows I could use some more energy!! I am very hopeful my body reacts that way. I already start my wake up in the a.m. with 12 oz. of water, have done this for years, so will just have to increase my daily intake. Am aiming for minimum 64 oz/day, will just have to see what my body says.
So, still on the fence as to WHEN to take this miracle pill -- I was leaning towards pm. Will be talking to my doc so will get more info there, too. Thanks again!! I am getting excited moreso than scared or anxious! FT
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FT,
I took mine around 10:00AM and have no complaints. I slept well at night...with a little helper now and then.
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The following are my Four Week Labs. I had a wonderful Man in Australia help me purchase Generic Harvoni abroad.
ALT: 37 down to 19
AST: 48 down to 27
GLUCOSE: 92 down to 78
VIRAL LOAD: 7 million down to less than 15
Anyone seeking treatment, don't wait as it is getting more difficult to purchase abroad! You are all in my prayers! Nothing is impossible with God, Messiah! I marvel at his ways and the Grace bestowed me. Me, not worthy to wipe the dirt from his shoe!
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Excellent result :)
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Thanks Jakas! Your name made me laugh! Thanks. Can't get enough of that.
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Great numbers, Rocket! You're well on your way!
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Rocket Girl, we are so very, very blessed that these DAAs have been developed!! Happy to see your 4 wk labs -- mine will be next month and I hope to post as good of numbers as yours!!! The future is bright ----- FT
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Good morning FT,
I was reading some of the posts and happened to see yours about coffee.I'll post this one but if you Google coffee/liver there's a lot of information on it.I drink a lot of coffee(like a pot a day).Enjoy it. :)
http://www.liversupport.com/coffees-liver-benefits/
Edit:This one is from the forum here.
https://www.hepmag.com/article/hepatitis-coffee-liver-19572-1220281259
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Thanks BillT! Perhaps I should have worded my question differently -- I was really wondering if others had been advised not to take their Harvoni with coffee, as I was by my hepatologist. I was advised not to take ANY medicine with coffee....... but after reading others' experiences, I think this may just be a personal preference of my doctor, vs. a real concern w/ Harvoni. If I don't have my coffee, it's not good! So I'm just waiting ~ an hour after coffee before taking the miracle pill, and not having coffee for ~ another hour or so. So far, so good. Thanks again, FT
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Found another for you FT.
http://www.harvoni.com/discover-harvoni/common-side-effects
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Thanks again BillT, hadn't seen that particular piece from Gilead. So I am limiting my caffeine to 3 / day, which I think will be OK.
AND ---- I am thrilled to report today, on day 8, that I feel the most normal I've felt in MONTHS. Maybe this is the "Harvoni High" I've read about? As of yesterday, just felt less tired and today even less so. Maybe my liver enzymes are normalizing? Fatigue has been the most debilitating aspect for me, so I hope this "normal" feeling continues! Thanks again for your help & support, FT
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Enjoy, FT. It's a wonderful feeling, isn't it? :)
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The first few weeks seem to be the worst for everyone FT.After that most of us started feeling better but there were some that had a very hard time with it all the way through.I was always tired because I wasn't sleeping.I still swear by the Aleve PM to help with that.Glad to hear you're doing better now and I hope the rest of the ride is uneventful for you. 8)
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Else, I was hoping you'd see this post as I was definitely thinking of you when I typed it! Day 5 & 6, I was wiped out and slept a lot both days. Day 7, when I felt a bit less tired, I assumed it was due to getting more needed sleep; but then yesterday, I knew it was more than that. After "diagnosing" this new feeling all day, I think I'd describe it as feeling like a weight had been lifted off me, just felt lighter, not sluggish/dragging, and more able to get off my a** and get a needed chore done, vs. just sitting there and thinking, "yeah, need to get that done, but I'm sooooooo tired". I really didn't expect to feel such a change so quickly, and am very grateful for the easy journey so far. You just never know, as this forum has proven. I also realize this could change, but I'm being optimistic and taking one day at a time --- along w/ one pill a day! FT
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I've almost completed 2 months now. Steadily losing my hair, headaches, nausea and not a lot of energy. I cut off about 2-3 inches of hair which seemed to help. I have to push
myself and get to the gym. I always feel better. The first four weeks seemed better than the second. I can't wait for this to be done. I've always been sensitive to medicines. For the first time I considered ending therapy when I finished the second bottle but I know I cannot do that. One more month! I have to keep busy. Not doing enough.
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where can i buy Harvoni? I am in China. I have no economy ability to go to America to treatment. :( Who can help me?
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Rocket Girl, hang in there and finish the last bottle! I am sorry to hear this hasn't been as easy as you'd of liked, this disease and the meds really do affect each of us differently. You just never know until you try. But you know you need to persevere with this to get to the other side! You're already 2/3 done.... I'm just at 1/4 done and we need to keep looking forward to that finish line. Have you talked to your doc re: these sides? A lot of people on here have said they were able to find ways to deal with them w/ their doc's guidance. The future is bright -- FT
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Thanks so much Future Thinker! I purchased my meds abroad, so my KAISER Doctor made it quite clear he was not treating me. Spineless little man. I had to fight to get the lab work. I need to stay busy and get to the gym. My husband has been sick, so we practically live at the hospital. I won't stop the meds - your right. I mean it's only 3 months right.
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Keep going, Rocket Girl. You can do it! It sounds like you just have 1 month left. Then you'll have the rest of your life to get sorted out from whatever side effects developed during treatment. And it won't take that long to do so. Plus you will be rid of Hep C. You're right about staying busy and keeping physically active. That will help you get through it.
kim
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Rocket Girl, sorry to hear about this doctor situation, but try to "stay calm and carry on" and get yourself to the other side, like it sounds you are doing. These side effects can come and go, from what I read here. Fight the Good Fight! FT
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You're on the home stretch now, RocketGirl. You've come this far, you can make it the rest of the way. Take it easy and try to pamper yourself a bit. Best of luck!
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Hi, RocketGiirl,
I lost a lot of my long hair on the prednisone taper.
Try Biotin, 1mg a day.(10,000 mcg)
I know others go for 10mg, but there's chances of reactions.
1mg works, and no problems.
Get some biotin shampoo, too.
There's one I used I ordered off of Amazon, "Vitamins Shampoo" for hair loss...
http://www.amazon.com/Advanced-Shampoo-Growth-Thinning-Clinical/dp/B00KU8FYN0/ref=pd_bia_nav_i_1?ie=UTF8&refRID=12TS96D4RAWW9VRKZTN4 (http://www.amazon.com/Advanced-Shampoo-Growth-Thinning-Clinical/dp/B00KU8FYN0/ref=pd_bia_nav_i_1?ie=UTF8&refRID=12TS96D4RAWW9VRKZTN4)
It has coconut oil in, biotin, and another ingredient to help hair from falling out.
I dreaded washing my hair, so much would come out.
This bottle I ordered a YEAR ago, and it is still not empty.
It lasts awhile...
It will grow back, hang in there!
2 months down, WOO HOO!
I got 2 weeks in, good results, a few migraines, but they go away with a headache tab and lots of water.
I get tinnitus also.
The sides were so bad with prednisone, I'm relieved to get a less bumpier ride, with Harvoni!
pansy