Hep C Discussion 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