Welcome to the forum. Your persistence and determination is inspiring! It's in each of best interests to be our own best advocate, and you have certainly showed how to do it. Best of luck to you during and after treatment, and thanks for sharing your story.
Penny
Gifthealth said
Oct 2, 2015
Thanks Matt
Gifthealth said
Oct 2, 2015
For those that might be interested, here is the email address that I used to give the Support Path People an extra push in approving my application.
patient_support@gilead.com
Best Wishes to All
Gifthealth said
Oct 2, 2015
Thanks wmlj1960. I have updated my signature
Matt Chris said
Oct 2, 2015
Hey GH
Welcome to the forum, you have found a good place for insigthful information from people who care. I enjoyed reading your history and the meticulous way you kept records, bravo for you.
Goes to show the importance of seeking every possible avenue, and informs us that Gilead has at least some management that has a conscience.
We (the Forum) could come to appreciate a person like yourself that shows great determination along with the smarts to help other members.
Pulling for your SVR
matt
wmlj1960 said
Oct 2, 2015
Hello Gifthealth. I'm glad you finally decided to join us. I admire your persistence ability and it's good that you finally got approved. It is sad that obtaining these meds is so difficult and even currently impossible for so many that suffer from this disease. It is my hope that that will change in the near future. It sounds like you have been taking notes well and are staying hydrated and getting your rest and that will make a big difference as you continue your treatment. Good luck with your treatment and keep us up to date on your progress. I'm sure since you have been on the site already you have noticed the signatures that are included at the bottom of most members post. If you would like to include your information in your own signature some help with doing that can be found here. A link to a list of definitions for most of the abbreviations you see is given on that page also. So make yourself at home and welcome to the forum.
Gifthealth said
Oct 2, 2015
thanks for your kind welcome
Tig said
Oct 2, 2015
Hi GH,
Welcome to the forum! I'm so glad you decided to introduce yourself. Since you have been reading our conversations for awhile, you already know we have a friendly and knowledgeable group here. It sounds from your harrowing story that you will fit in quite well here! We have some true Warriors among us and you exhibit the same strength required to make it successfully through treatment. I'm confident you will do well. Stay compliant, hydrate well and you'll be doing the happy dance in no time! Others will be along soon to welcome you in. If you have any questions, don't hesitate to ask. Good luck!
Gracie said
Oct 2, 2015
Sounds like you are a person who doesn't give up and isn't afraid to ask. We need more like you to get these changes to the policies so many require. I wish you luck on your treatment protocol. It's a very high success rate so I know you'll do well!
Welcome to the forum!!!!
Gifthealth said
Oct 2, 2015
Hello Everyone.
I have been reading posts on this forum for some time and I thought it was time for me to contribute. I would like to share my story. I was born with some chronic GI problems that required surgery when I was 7 days old and again at 7 years of age. I received blood transfusions during my surgery at age 7. I was very fortunate to have a successful correction of my GI concerns and I went on living a very typical American life (high school, college, marriage, kids etc). I have never been involved with IV drug usage tattoos or any other high risk blood to blood activities. When I was in my 30's I donated blood and was shocked to receive a call that my donation tested positive for HVC. My first liver biopsy at age 40 revealed a stage 1 status. I was told to continue to monitor and any treatment at that time was not suggested. My second liver biopsy in my late 40's showed a stage 2 status. I elected to try the treatment of the day (Interferon and Ribo). I was told that my Genotype 2 had a 90% chance of cure with 6 months of this treatment. At 3 months into this terrible treatment I was told to stop medications because blood testing revealed that my body was not responding. I was devastated.
At each of my future GI follow ups I was told not to worry and that I would probably never have any health problems related to HVC. Once the new combination treatment for Genotype 2 came out (Sovoldi and Ribo), I was the first one into by GI doc's office to discuss this treatment. He said, Okay, lets give it a try. (this was in Jan. 2015). I was then appointed to return to discuss the specifics of starting treatment at which time I was told that my insurance company would not cover the cost of this Rx. I was even told that since my HCV status was "stable" no treatment was recommended at all. I was even told that if I wanted to paid $100,000 for the medications, I would not be treated because this is the policy of my insurance company due to my "stable status". Wow!!!!
At this point, I decided to look into all of my options. I spent the next few months trying to figure out how I could access treatment. I put my energy into applying for Giliad's Support Path. I called the Support Path representatives many times (over 15) to make sure that my application was completed exactly as needed. I also had to find a private GI doctor to sign the form (since my regular GI doc would not support my treatment based upon my insurance company decision) (yes - this is an example of insurance companies dictating medical treatment decisions). Once I had my two insurance company denial letters, plus all of my other forms put together in a nice binder with tabs and everything, I sent it in on July 14, 2015 only to learn that the Support Path Program drastically changed their approval guidelines 2 weeks before. (Crap!)
I called Support Path 2 weeks after I sent in my application and had a 1 hour discussion with them. They told me all of the things that I did wrong in filling out my application and that my application was in a "hold status". I was also told that I would not be approved. They did give me an email address to contact to voice my ongoing concerns with their handling of my application.
At this point I was tired and worn out. I decided I might look into going to India and purchasing mediation there. Yes, I do not give up. I set up arrangements to do this only to hear from my private GI doc could not support my care if I was taking mediations purchased in India. He stated (and I feel rightfully so) that he could not be assured of the safety of these meds).
About a week later, I was going through my desk and I found the email address to contact Giliad to voice my concerns regarding their Support Path Program. I decided to send them an email. I stated in my email everything I have done to prepare and submit my application. I stated that I did EVERYTHING that I was told to do by THEIR telephone representatives. I also told them that my application would have been sent in a lot earlier if I did not follow through with all of the recommendations that THEIR representatives told me to do. I finally told them to listen to their taped phone calls that I had with their reps (yes, they do tape ALL of their calls) and hear what I was told to do.
Well, about 3 weeks after I sent this email, I got the call. A Support Path Rep called me to let me know that I was approved for a 3 month course of Sovaldi. I am now working with my private GI doc and I have purchased Ribo on my own (about $1,400 for a 3 month supply). I also am paying for all blood work and the private GI Doc's monitoring fees. I am more than happy to pay for these things.
I am about to complete week 3 of my 3 month treatment. Things are going pretty well. As long as I allow enough sleep time and I drink lots of fluids, I feel fine. I do need about 9-10 hours of sleep time every night.
I feel I am very, very fortunate to be able to have this treatment made available to me. I am very positive that I will have a successful result.
I hope that this post will help others with their quest to access treatment. My approach is just don't give up.
Hi GH,
Welcome to the forum. Your persistence and determination is inspiring! It's in each of best interests to be our own best advocate, and you have certainly showed how to do it. Best of luck to you during and after treatment, and thanks for sharing your story.
Penny
Thanks Matt
For those that might be interested, here is the email address that I used to give the Support Path People an extra push in approving my application.
patient_support@gilead.com
Best Wishes to All
Thanks wmlj1960. I have updated my signature
Hey GH
Welcome to the forum, you have found a good place for insigthful information from people who care. I enjoyed reading your history and the meticulous way you kept records, bravo for you.
Goes to show the importance of seeking every possible avenue, and informs us that Gilead has at least some management that has a conscience.
We (the Forum) could come to appreciate a person like yourself that shows great determination along with the smarts to help other members.
Pulling for your SVR
matt
Hello Gifthealth. I'm glad you finally decided to join us. I admire your persistence ability and it's good that you finally got approved. It is sad that obtaining these meds is so difficult and even currently impossible for so many that suffer from this disease. It is my hope that that will change in the near future. It sounds like you have been taking notes well and are staying hydrated and getting your rest and that will make a big difference as you continue your treatment. Good luck with your treatment and keep us up to date on your progress. I'm sure since you have been on the site already you have noticed the signatures that are included at the bottom of most members post. If you would like to include your information in your own signature some help with doing that can be found here. A link to a list of definitions for most of the abbreviations you see is given on that page also. So make yourself at home and welcome to the forum.
thanks for your kind welcome
Hi GH,
Welcome to the forum! I'm so glad you decided to introduce yourself. Since you have been reading our conversations for awhile, you already know we have a friendly and knowledgeable group here. It sounds from your harrowing story that you will fit in quite well here! We have some true Warriors among us and you exhibit the same strength required to make it successfully through treatment. I'm confident you will do well. Stay compliant, hydrate well and you'll be doing the happy dance in no time! Others will be along soon to welcome you in. If you have any questions, don't hesitate to ask. Good luck!
Sounds like you are a person who doesn't give up and isn't afraid to ask. We need more like you to get these changes to the policies so many require. I wish you luck on your treatment protocol. It's a very high success rate so I know you'll do well!
Welcome to the forum!!!!
Hello Everyone.
I have been reading posts on this forum for some time and I thought it was time for me to contribute. I would like to share my story. I was born with some chronic GI problems that required surgery when I was 7 days old and again at 7 years of age. I received blood transfusions during my surgery at age 7. I was very fortunate to have a successful correction of my GI concerns and I went on living a very typical American life (high school, college, marriage, kids etc). I have never been involved with IV drug usage tattoos or any other high risk blood to blood activities. When I was in my 30's I donated blood and was shocked to receive a call that my donation tested positive for HVC. My first liver biopsy at age 40 revealed a stage 1 status. I was told to continue to monitor and any treatment at that time was not suggested. My second liver biopsy in my late 40's showed a stage 2 status. I elected to try the treatment of the day (Interferon and Ribo). I was told that my Genotype 2 had a 90% chance of cure with 6 months of this treatment. At 3 months into this terrible treatment I was told to stop medications because blood testing revealed that my body was not responding. I was devastated.
At each of my future GI follow ups I was told not to worry and that I would probably never have any health problems related to HVC. Once the new combination treatment for Genotype 2 came out (Sovoldi and Ribo), I was the first one into by GI doc's office to discuss this treatment. He said, Okay, lets give it a try. (this was in Jan. 2015). I was then appointed to return to discuss the specifics of starting treatment at which time I was told that my insurance company would not cover the cost of this Rx. I was even told that since my HCV status was "stable" no treatment was recommended at all. I was even told that if I wanted to paid $100,000 for the medications, I would not be treated because this is the policy of my insurance company due to my "stable status". Wow!!!!
At this point, I decided to look into all of my options. I spent the next few months trying to figure out how I could access treatment. I put my energy into applying for Giliad's Support Path. I called the Support Path representatives many times (over 15) to make sure that my application was completed exactly as needed. I also had to find a private GI doctor to sign the form (since my regular GI doc would not support my treatment based upon my insurance company decision) (yes - this is an example of insurance companies dictating medical treatment decisions). Once I had my two insurance company denial letters, plus all of my other forms put together in a nice binder with tabs and everything, I sent it in on July 14, 2015 only to learn that the Support Path Program drastically changed their approval guidelines 2 weeks before. (Crap!)
I called Support Path 2 weeks after I sent in my application and had a 1 hour discussion with them. They told me all of the things that I did wrong in filling out my application and that my application was in a "hold status". I was also told that I would not be approved. They did give me an email address to contact to voice my ongoing concerns with their handling of my application.
At this point I was tired and worn out. I decided I might look into going to India and purchasing mediation there. Yes, I do not give up. I set up arrangements to do this only to hear from my private GI doc could not support my care if I was taking mediations purchased in India. He stated (and I feel rightfully so) that he could not be assured of the safety of these meds).
About a week later, I was going through my desk and I found the email address to contact Giliad to voice my concerns regarding their Support Path Program. I decided to send them an email. I stated in my email everything I have done to prepare and submit my application. I stated that I did EVERYTHING that I was told to do by THEIR telephone representatives. I also told them that my application would have been sent in a lot earlier if I did not follow through with all of the recommendations that THEIR representatives told me to do. I finally told them to listen to their taped phone calls that I had with their reps (yes, they do tape ALL of their calls) and hear what I was told to do.
Well, about 3 weeks after I sent this email, I got the call. A Support Path Rep called me to let me know that I was approved for a 3 month course of Sovaldi. I am now working with my private GI doc and I have purchased Ribo on my own (about $1,400 for a 3 month supply). I also am paying for all blood work and the private GI Doc's monitoring fees. I am more than happy to pay for these things.
I am about to complete week 3 of my 3 month treatment. Things are going pretty well. As long as I allow enough sleep time and I drink lots of fluids, I feel fine. I do need about 9-10 hours of sleep time every night.
I feel I am very, very fortunate to be able to have this treatment made available to me. I am very positive that I will have a successful result.
I hope that this post will help others with their quest to access treatment. My approach is just don't give up.
Best Regards to All