Hepatitis Forums
Hepatitis C Main Forums => On Hepatitis C Treatment => Topic started by: tblount on September 19, 2015, 06:05:42 pm
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Let me start by shouting "God Bless Gilead" They gave me
the medication to save my life.
Hi, I'm Terry, Male, 64 with Hep C genotype 2b and 17
million load count.
My symptoms are mild but clearly noticeable. I was feeling
fatigue when I did anything that required physical effort
but the main thing I noticed was heavy, heavy sweating at
any amount of physical exertion. I mentioned the heavy
sweating to a friend who was a retired nurse and she said
that the sweating was a pretty good indication that I had
problems with my liver.
I took several test and one showed
positive on the hepatitis c serum test.
I was advised to take a RNA test to confirm I was actively
infected. The RNA test came back positive. I then took test
to determine the genotype and load count.
Various labs offer these test for about $1,000 but "help for
hep C" (877-435-7443) was able to help me get these test
through Quest Diagnostics for $250.
Those test take two weeks to complete but after three weeks
had passed I had not been notified. Eventually I called the
right people and got the results. This was the first of
several situations that stopped the entire process and put
treatment and cure on permanent hold.
This is critical. Let me say that again. THIS IS CRITICAL!
If the patient does not closely monitor and follow up on
tests and getting documents faxed to the correct departments
the entire treatment and cure process will be stopped
permanently. It's pretty sad that people who do this
paperwork day after day after day - all day - have so many
problems getting it done right.
The treatment depends on the genotype and the load count to
set the duration of the treatment and monitor success.
Until I got those test I had not seen a doctor and did not
have a doctor. With the help from Help for Hep C I found a
clinic about an hour away that charges on a sliding scale. I
had no insurance because I couldn't afford the deductible
anyway. Very few insurance companies and definitely NOT the
Affordable Care Act will cover a $90,000 prescription.
When I finally saw a doctor I had written up a summary of my
current situation and test results. The Dr. filled out the
paperwork Gilead had sent me and I faxed it to Gilead's
support department.
A week later I got a letter from Gilead with the good news
that I had qualified for free meds. {YEAAA) I felt like I
had won the lottery!
Another week passed and I called Gilead and asked when I
might get the medication. They said they were waiting on my
Dr to reply to the documents they had faxed a week earlier.
The process had come to a permanent halt a second time.
I looked over all the documents I had faxed to Gilead and
didn't see any fax number for my doctors clinic so I
concluded the fax probably went to a receptionist on a voice
line. I was told later the fax was sent to the voice phone
line because it was the only number they had.
I called my clinic and got their fax number and then called
My Support Path at Gilead (855-769-7284) and got them to fax
the paperwork to the fax line at the clinic.
My doctor's staff got the fax and my doctor signed the Rx
and they faxed it to the department at Gilead the fax had
come from.
Gilead got the fax but put the process on permanent hold
again because the fax was supposed to go to their shipping
department.
After a few more days I called and found that the process
had stalled out again. I got the fax number for their
shipping department and got my clinic to re-fax the Rx.
A couple days later (9-18-15) FedEx delivered my first
month's supply of Sovaidi. I started treatment that night.
BUT found out that my treatment also requires Ribavirin so
treatment is on hold again. Trying to get through to my dr.
I have called a dozen pharmacies and none of them have it
in stock. Walmart said they could get it when they get
the Rx.
The stress of dealing with worrying about how I would ever
pay for this expensive medicine and the problems and delays
that I had to deal with has not been pleasant at all. In
addition to that it was very stressful to contact my past
sexual partners and tell them that I had hep c. (Even though
the probability of getting infected through sexual contact
is very small.)
A few days ago I found that I could buy hep c at-home test
for about $8 each <Hep Moderators: In keeping with our policy of not promoting commercial sites, we've removed a promotional link> and I bought a package of 5
to have available. Yes, I'm a prepper.
I wish you all the best, especially if you have recently
found out you or someone you love is infected and trying to
figure out how to slay this dragon.
Again, God Bless Gilead.
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Congratulations tblount on getting going on your hepc free journey :)
Here's hoping you don't get sides. But, if you do, it's not the end of the world and it's not forever.
Cheers to you getting SVR!,
bye
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Thank you and good luck on your journey. Looks like you have about 10 days head start on me. We should have a great Christmas present.
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I'm not sure why you are not getting ribavirin either. Someone else cleverer than me will no doubt have more to offer but I'd chase that up with your doctor, specialist or whoever is handling your treatment.
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Hi Terry. Congrats on getting your free Sovaldi from Gilead!
I am no expert - just another patient like you. But as far as I know, Sovaldi simply does not work on its own for curing HCV. It needs to be (and has always been) combined with ribavirin. However, a new option of combining Sovalidi with Daklinza now exists as of a month or two ago when Daklinza was approved.
Here is a handy chart at the link below showing all the currently prescribed HCV treatments for all the different genotypes:
http://www.hepmag.com/articles/2512_18756.shtml
As you can see, there is NO situation where Sovaldi alone is recommended.
I can only imagine Gilead assumed your Dr. was overseeing your treatment and would ensure you had the necessary ribavirin to accompany the Sovaldi.
I would call the Gilead Patient Assistance line immediately and ask what you should do. They may tell you to halt the Sovaldi (since you just began) until you get the ribavirin and can take them together. But in any case, you need to call Gilead and then your Dr. asap.
I am happy to be corrected if anyone on the forums knows of situation where Sovaldi alone is sufficient. Everything I have read says it is not.
best,
kim :)
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Thank you. I'm glad I mentioned that. My dr did write both but I thought Gilead knew more.
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Gilead and a dozen other websites clearly say "Do not take Solvadi alone"
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Very frustrating indeed, Terry! But as you say - at least you've got the hard-to-get pills in hand. Many people have not been able to make it that far. Seems like a big goof on somebody's part. Gilead's? Your doctor's? I suppose it doesn't really matter now so long as you get the ribavirin so you can get started…
best,
kim