Hep C Discussion Forum

I also have genotype 2 and am on sovaldi and ribavirin. These meds have proved to be particularly effective with gt 2. Glad you are gonna be taking them. I am on week 11 starting today. There are miminal side effects and the meds are well tolerated, watch out for anemia cause that's the big one. Most people are UND by week 4 so there is a good chance of a cure. It took me 8 weeks to reach UND but I'm the exception not the rule. Use baby shampoo, baby wash and baby powder and lotion which will help avoid the rashes, be kind to yourself for the next 12 weeks. The fatigue and mental confusion have been my worst side effects. Your doctor will probably order lots of blood tests during the course oF tx. but it hasn't really been bad. I've managed to work full time and attend classes while on the medication so it doesn't always interfer with ur life too much. Good luck and let us know how you do with updates.

gigi

Congratulations John! I'm so happy to hear you were approved for this excellent treatment. It's odd how they came to approve you by twice denying it and twice approving! Double the fun huh? Whatever it takes, lol! Your chances of success are quite high and you have good reason to be excited. If you have any questions regarding payment assistance programs, we have a good reference thread here on the forum in the Knowledge section. Gilead's coupon program has been very helpful for many of our members, it should work out well for you too. Good luck going forward, I'm anxious to hear about your first undetectable test!

Tig

Your situation is understandable but before you know if Sovaldi and ribavirin is right for you , you have to get a genotype test , Then depending on what your genotype is the right drug combo may or may not be available for your type.  you may have to use the interferon and you may hold off till something better is ready,  It all depends.

Hi and welcome from me as well, John.

In the USA, you should be able to access Sovaldi/ Ribavirin. The US Forum members have advised you about this.

In the rest of the world, Peg/ Riba remains the only treatment. However, with SVR rates of 80-90% for Geno 2, this is hardly a problem.

Good luck.

Hi John and welcome from me, as well. From what I can tell browsing the NC First Health Part D online formulary (updated 4/22/14), Sovaldi is not covered under any of their plans. It's possible that an exception could be granted, so you may well choose to follow the fine advice of my fellow members and push for all it's worth. Should that fail, coverage dynamics could change once newer treatment options hit the market. Medicare is problematic across the country. 

Best of luck to you,

wayne

Hi John,

I'd like to welcome you to the forum too. Your issue with insurance and specifically government controlled benefits are typical of the stories going around right now. The pharmaceutical formulary for Medicare Part D is restrictive and seems to me that they can and will make determinations based on available funding. The determinations for approvals were established in many locations based on existing standards of care, namely Interferon, Ribavirin and either of the PI's, Incivek or Victrelis. When Gilead released a treatment with the backbone drug Sovaldi costing $1000 per pill, $84,000 per 12 week course of treatment, they balked and the pen of denial started swinging wildly. Add Olysio to the mix and the chances for plans like Medicare or Medicaid to cover it became slight. There are a few things you can do to light a fire under the process, but whether you want to at this point is up to you. Looks like your liver health is still in fairly good shape and the need for immediate treatment isn't present. By next year I believe the results from the many current treatments underway will only improve the odds of acceptance across the board. The negative views of Interferon in general are getting better known, especially after the success stories from Sovaldi roll in. Sovaldi has little in the way of negative side effects and that finding alone is carrying more and more weight. On appeal now, the simple fact that a patient does not want to take Interferon is being considered a disqualifying event. Since you haven't treated before and relapsed doesn't show any type of resistance to it, so you should be tested for the IL28B poly morphism and the Q80K poly morphism to determine how your are in those areas. Those two results could work in your favor in any appeal and certainly would make a difference if you decided to treat with INT. Your doctor should be able to discuss these items with you and if s/he hasn't, perhaps as Enavigo mentioned, you might consider a second opinion.

The new and upcoming treatment from Gilead, Sovaldi and Ledispavir will offer the highest rates of SVR than ever before. How the combo affects those with genotype 2 continues to be researched. Here's a link to some information that discusses briefly the current treatment options:  http://www.hepmag.com/articles/2512_18756.shtml. Were I in your shoes, I'd do as suggested and contact your doctor and find out what the status of your appeal is. It's certainly worth investigating. There are some additional payment assistance programs and organizations available. I've dealt with some listed and have also compiled a list here on the forum that is fairly comprehensive. I recommend contacting them, the Pan Foundation is an excellent group and is most helpful. You can access the list using the link in my signature block or it can be found in our Knowledge Base thread on the Home page.

Good luck John and if you have any questions, please check out our search function at the top center of each page. You can also ask any question and one of the great people here will be quick to help! I'm glad you're here! Be well...

Tig

Hey John! Welcome - I'm in NC also and I'm genotype 2 as well! (there isn't always a letter associated with GT2, some get one back in their test and some don't. It's weird but don't worry as it doesn't affect your treatment).

Per your age and your mention of part D I presume you are a medicare recipient and unfortunately that's likely the reason they are pushing back. They are crazy to say you shouldn't be on Sovaldi/Riba though - as Isiscat said, that's the recommended treatment for us now. I just finished my 12 weeks yesterday; was undetected by week 4. You mentioned you want to learn to advocate for yourself - first lesson, STAY ON YOUR DOCTOR. Call him/her tomorrow about that appeal! Seriously!  Are you treating at UNC-CH Transplant center?  If not, you may want to look into them - they are much better equipped and educated in the new treatments than many of the GI docs around there.  Your doc should fight for you and give you guidance as to who you can call to fight also. And your doc should be staying in touch with you and/or should be returning your calls/messages timely. If you've got to "be that guy" well then "be that guy" and make sure they know you expect the appropriate treatment. As Jill mentioned, there is payment assistance if it comes down to it for Sovaldi - they will/have cover A LOT!  Jill gave you one link, the other Gilead one that's direct for Sovaldi that helped with my copay is: 

http://www.mysupportpath.com/

I also needed their assistance when I had trouble getting my last refill. They are amazing over there. Now I know the Gilead assistance is NOT available with prescriptions that will/should be covered "in whole or in part" by Medicare however if Medicare is outright denying Sovaldi then that may be a loop hole that gets you the assistance you need! Oh, and buy a notebook or something and write everything down!!!  Document every call you made, date/time you made it and to who. Then summarize for yourself what the discussion was about and when you expect to hear back. That way they can't say you didn't do this or that; you will have date and time, which can be verified. Basically, just make people answer your questions, speak up, and if you don't understand something and your doctor's aren't explaining or getting back to you - you can always ask on here!  Best of luck.

Hi John, welcome to the forum, I`m glad you found us! 

I think you`re very wise to look into your options, and in your position there are better treatments available than peginterferon and ribavirin.  We have quite a few members here doing treatment with Sovaldi and some have had issued with their insurance companies over the cost, but I should chase up that appeal as you should have heard something back by now.  Hopefully your insurance company will change their mind on appeal but if not then another option would be to look into Gilead`s Patient Assistance program for Sovaldi.  I`ll give you the link..

http://www.gilead.com/responsibility/us-patient-access

Otherwise it sounds as though you have time to wait for other treatment combos to become available.

I`m sure other members will be along to greet you and add their own experiences.  Feel free to look around and join in, this is a very friendly group.  Note that we have a search box at the top of the page, right in the middle.

Best of luck!