Oops, beat me to it Tig. No problem if the discussion veers off to the SP deal.
MikeH said
Aug 7, 2015
Just swallowed my first $1000. Put on my strongest readers and stared at the not-so-little orange pill for awhile. Getting Harvoni still seems like a dream scenario that could end when I wake. I am hoping my choice to wait for a better new treatment was a good one, all the indications since Support Path came through are that Harvoni is the answer I was waiting and hoping for. Though I was not desperately ill, and despite the poor record of pegasys in GT 1a treatment, I must say that there was a lot of brow-beating from medical pros and other heppers who couldn't seem to accept my choice not to go with Pegasys. One lady on the pegasys berated me in strong terms and basically accused me of being a dimwitted weakling. A classmate of mine, another GT 1a carrier did the Pegasys one and a half times. He had to quit early on the second go-round due to a dangerously low white blood cell count. He died about a year ago on the day that PBS aired a segment about the approval of a new drug called Sovaldi. I got the impression from his girlfriend that it was an excruciating death. She was devastated.
I heard the hydration advice on another forum, thanks for the reminder. I'm suffering the ubiquitous brain fog and often fail to remember if I've taken the vitamins I've been using so I'm going to use the plastic seven bay daily pill dose box to limit blunders like missing doses or double-dosing with the Harvoni. I'm extra fortunate that I'm not a "pioneer" and have experienced consultants like you guys to guide me. Thanks for the welcome.
Brian, the word on that other forum is that insurers were aware that Gilead's Support Path would routinely step in if they denied treatment to sub-F3 patients, reducing Gilead's profits and maximizing their own. Gilead's response is apparently intended to discourage this tactic:
If there is to be further discussion, lets start a new post and not step on Mike's new thread, thanks.
Greg D said
Aug 6, 2015
Hi Mike,
I would like to welcome you as well. I was not on Harvoni but one thing all protocols have in common is the need for continuity. A few times on my 'voyage' I was in a position where my meds were either late or had not been ordered for one reason or another. Some here have suggested that perhaps, if it's not too late, you could start taking your Harvoni in a week or two. That way if there is some logistics problem you will have that week or two buffer to cushion any unforeseen delivery issues. Just a thought for you to consider as being on an island, one never knows. Then again maybe your treatment team has some extras kicking around in case situations, such as this, occur.
As Tig mentioned, hydration is key along with remembering if you have taken your pill for that day or not.
All the best! Drop in anytime, the coffee's always on.
Brian1412 said
Aug 6, 2015
Didn we see a release from. Gilead that said they would continueto support. Via path people who. Were denied treatment from their insureance company?its here on this forum somewhere.
I talked to my home support group and they have no problem with continuing. To get people inyo treatment: again i think it. Insurance companies using . This tactic to yry to get off responsibility. My home group got 10plus this week full ride full treatmen. People are getting full ride in my county
Tig said
Aug 6, 2015
Hi Mike,
I'd like to welcome you too! You have found a great group of people with the same goal in mind, kill the beast and get on with a better life. Some aren't as fortunate as you were to get approved quickly by Support Path, but you shouldn't be anything but thrilled to have received such good fortune. It's obvious from your comment that you're doing what you can to see that others are ultimately as fortunate as you have been. That's what we try to accomplish here, helping others in any way possible. Everything we can do to help matters and I appreciate you doing what you can to accomplish that.
As Greg mentioned, you're on the real deal and will beat this thing. That I have no doubt. I'm sure you've done your homework and are aware of the success rates provided by this incredible protocol. With a relatively fibrosis "light" liver right now, you made the right choice to wait on the all oral DAA treatments. Some of us weren't as fortunate in that arena and chose to slap on the Interferon spurs and ride the Dragon to it's death. We all did and do what's necessary to win the battle.
I wish you the best, and know that regardless of protocol, you're going to be taking highly effective, but very powerful drugs to combat this disease. There will be days you feel like you were pulled through a keyhole backwards, but those days are few compared to what you would've experienced two years ago. Just stay compliant, eat a balanced diet and pay particular attention to hydration. You should drink 3-4 liters of water per day, keep your urine a pale yellow throughout treatment. Doing so will minimize your felt side effects considerably. Others here will attest to that. If you have any questions at all, don't hesitate to ask. Good luck and stay in touch. We're here for you...
Groupergetter said
Aug 6, 2015
Hi Mike, and welcome to a great forum. Glad to hear you're getting started on tx. Harvoni is the real deal. I just reached SVR Monday on this protocol. You are very fortunate to be getting on board. The side effects are minimal, some have none. For some remembering to take their meds every day is the most difficult part. :)
-- Edited by Groupergetter on Friday 7th of August 2015 01:32:04 AM
MikeH said
Aug 6, 2015
Hello everyone. Found this forum today. I live on the Big Island of Hawaii. I've been aware of my status for about fifteen years. Genotype 1a carrier. I chose not to pursue the old Pegasys combination therapy which many of you probably know was none too effective for those of us with 1a. After being denied Harvoni by my insurance carrier (HMSA) because of my moderate liver status (F1-F2), Gilead and Support Path informed me that they'd be supplying the drug. I gather I may be among the last who're receiving the SP assistance and I feel very fortunate indeed. I seem to have applied just in time. FEDEX informs me the first course of Harvoni has arrived on the island, and will be delivered to my door later this afternoon.
I hope my concerns about diminishing support for others in the community in the future are unfounded. Hopefully some of the money I've been paying to HMSA will be utilized to provide therapy for folks with more severe liver issues who will qualify under the existing standards.
Just swallowed my first $1000. Put on my strongest readers and stared at the not-so-little orange pill for awhile. Getting Harvoni still seems like a dream scenario that could end when I wake. I am hoping my choice to wait for a better new treatment was a good one, all the indications since Support Path came through are that Harvoni is the answer I was waiting and hoping for. Though I was not desperately ill, and despite the poor record of pegasys in GT 1a treatment, I must say that there was a lot of brow-beating from medical pros and other heppers who couldn't seem to accept my choice not to go with Pegasys. One lady on the pegasys berated me in strong terms and basically accused me of being a dimwitted weakling. A classmate of mine, another GT 1a carrier did the Pegasys one and a half times. He had to quit early on the second go-round due to a dangerously low white blood cell count. He died about a year ago on the day that PBS aired a segment about the approval of a new drug called Sovaldi. I got the impression from his girlfriend that it was an excruciating death. She was devastated.
I heard the hydration advice on another forum, thanks for the reminder. I'm suffering the ubiquitous brain fog and often fail to remember if I've taken the vitamins I've been using so I'm going to use the plastic seven bay daily pill dose box to limit blunders like missing doses or double-dosing with the Harvoni. I'm extra fortunate that I'm not a "pioneer" and have experienced consultants like you guys to guide me. Thanks for the welcome.
Brian, the word on that other forum is that insurers were aware that Gilead's Support Path would routinely step in if they denied treatment to sub-F3 patients, reducing Gilead's profits and maximizing their own. Gilead's response is apparently intended to discourage this tactic:
http://www.hepmag.com/articles/gilead_limits_pap_2831_27553.shtml
Here's a WSJ article on the Gilead dilemma:
Gilead Limits Enrollment in it HCV Patient Program to Pressure Insurers
If there is to be further discussion, lets start a new post and not step on Mike's new thread, thanks.
Hi Mike,
I would like to welcome you as well. I was not on Harvoni but one thing all protocols have in common is the need for continuity. A few times on my 'voyage' I was in a position where my meds were either late or had not been ordered for one reason or another. Some here have suggested that perhaps, if it's not too late, you could start taking your Harvoni in a week or two. That way if there is some logistics problem you will have that week or two buffer to cushion any unforeseen delivery issues. Just a thought for you to consider as being on an island, one never knows. Then again maybe your treatment team has some extras kicking around in case situations, such as this, occur.
As Tig mentioned, hydration is key along with remembering if you have taken your pill for that day or not.
All the best! Drop in anytime, the coffee's always on.
Didn we see a release from. Gilead that said they would continueto support. Via path people who. Were denied treatment from their insureance company?its here on this forum somewhere.
I talked to my home support group and they have no problem with continuing. To get people inyo treatment: again i think it. Insurance companies using . This tactic to yry to get off responsibility. My home group got 10plus this week full ride full treatmen. People are getting full ride in my county
Hi Mike,
I'd like to welcome you too! You have found a great group of people with the same goal in mind, kill the beast and get on with a better life. Some aren't as fortunate as you were to get approved quickly by Support Path, but you shouldn't be anything but thrilled to have received such good fortune. It's obvious from your comment that you're doing what you can to see that others are ultimately as fortunate as you have been. That's what we try to accomplish here, helping others in any way possible. Everything we can do to help matters and I appreciate you doing what you can to accomplish that.
As Greg mentioned, you're on the real deal and will beat this thing. That I have no doubt. I'm sure you've done your homework and are aware of the success rates provided by this incredible protocol. With a relatively fibrosis "light" liver right now, you made the right choice to wait on the all oral DAA treatments. Some of us weren't as fortunate in that arena and chose to slap on the Interferon spurs and ride the Dragon to it's death. We all did and do what's necessary to win the battle.
I wish you the best, and know that regardless of protocol, you're going to be taking highly effective, but very powerful drugs to combat this disease. There will be days you feel like you were pulled through a keyhole backwards, but those days are few compared to what you would've experienced two years ago. Just stay compliant, eat a balanced diet and pay particular attention to hydration. You should drink 3-4 liters of water per day, keep your urine a pale yellow throughout treatment. Doing so will minimize your felt side effects considerably. Others here will attest to that. If you have any questions at all, don't hesitate to ask. Good luck and stay in touch. We're here for you...
Hi Mike, and welcome to a great forum. Glad to hear you're getting started on tx. Harvoni is the real deal. I just reached SVR Monday on this protocol. You are very fortunate to be getting on board. The side effects are minimal, some have none. For some remembering to take their meds every day is the most difficult part. :)
How many weeks were you prescribed? If you haven't already, take some time and look at threads on the forum. There is a wealth of knowledge here, the members are great and very supportive. The search function is very useful. There is a thread here: http://hepcfriends.activeboard.com/t58762824/all-aboard-for-the-harvoni-treatment-train-enjoy-the-ride-fo/?w_r=1438862348#lastPostAnchor where people share their experiences on the "Harvoni Train" Be well, and good luck in your treatment.
-- Edited by Groupergetter on Friday 7th of August 2015 01:32:04 AM
Hello everyone. Found this forum today. I live on the Big Island of Hawaii. I've been aware of my status for about fifteen years. Genotype 1a carrier. I chose not to pursue the old Pegasys combination therapy which many of you probably know was none too effective for those of us with 1a. After being denied Harvoni by my insurance carrier (HMSA) because of my moderate liver status (F1-F2), Gilead and Support Path informed me that they'd be supplying the drug. I gather I may be among the last who're receiving the SP assistance and I feel very fortunate indeed. I seem to have applied just in time. FEDEX informs me the first course of Harvoni has arrived on the island, and will be delivered to my door later this afternoon.
I hope my concerns about diminishing support for others in the community in the future are unfounded. Hopefully some of the money I've been paying to HMSA will be utilized to provide therapy for folks with more severe liver issues who will qualify under the existing standards.
Wishing all of you the best,
Mike