Treatment with generic Sovaldi

[JoAnnP]

Sofosbuvir   Natco Pharma Ltd    400 mg
Rebetol   Fulford (India) Ltd.   200mg

My daughter (26) was recently dx with Hepatitis C genotype 2b
HCN RNA 234226
HCN RNA 5.37
Bilirubin, Inderect 0.1 L
AST 18
ALT 19
ANA screen, IFA negative
Abdominal ultra sound unremarkable

She contracted Hep C within the last year, She was tested before pregnancy and during pregnancy so we know for sure she has gotten it within the last year, most likely in the last six months. The doctor recommended Solvaldi and Ribaviran for 12 weeks and then told her it would be almost impossible to get pre authorization for the medication. She told her insurance companies were limiting the medication to people who are the sickest.

She has a friend from India who would like to send her the medication. She asked her GI if she would follow her and while not happy has agreed to if she starts taking the medication. What I would like to know is if you had access to the generic medication would you take it or would you wait to seek approval for the medication here in the US? I am not sure my opinion is going to matter much since she is well over 18 years old, but would love to hear thoughts from people that are living with this illness. What concerns would you have?

[KimInTheForest]

Australian Greg Jefferys went to India to buy generic Sovaldi (for $1,000, I think) because he could not afford it otherwise (about $85,000, iirc) and also it may not even be approved yet in Australia, so might not have been available to him at any price unless he went to India.

He has posted about his experience of doing that in a series of postings here: http://blogs.hepmag.com/gregjefferys/

He is taking it right now. My sense is he happy to have done it, feels it is the only way he could get hooked up with the new drugs that are curing HCV.

If it were me, I would certainly consider something like that. But I would also look for clinical trials that could give me something good. That is how I managed to get the harvoni I am now taking - through a trial.

best of luck to your daughter!
kim

[JoAnnP]

Thank you, it will be nice to see how he is doing with the medication from India.

[Mike]

One of the issues with generics being shipped in to the US, is that it is illegal to do this, and the medication can be ceased upon arrival.

Another issue is quality of the medication, as you have no  guarantee what is being shipped is the real McCoy. There is also the issue of liability and you would have no legal recourse should any medication and or treatment related events occur (though your daughter's physician might have some legal exposure for sanctioning this route).

Having said this, if my only option was the out-of-country generic route, I would probably move forward with it if the liver disease was progressing.

It's worthy to note, however, that HCV progresses slowly and upwards to 80% of those infected will not develop, and will never experience any liver damage after decades of infection.

Since your daughter recently contracted HCV, she most likely does not have any liver damage.

So waiting a couple of years to treat may also be a good options.

Best wishes, Mike

[JoAnnP]

Mike,

Thank you for taking the time to respond. I am trying to convince her to wait until she can get her insurance to approve the medication. She is scared, she is a single mother, still young and I do not believe she has recovered from the shock of being diagnosed. I am sure many on here can relate to the fact she was told she has a serious illness, there is a treatment, but her insurance won't pay for it until she has liver damage. It is shocking, she cried for two weeks.


This is just my opinion, but if she were concerned about things being illegal or not being sure what was in them, she probably would not have contracted this illness in the first place. She is in intensive outpatient rehab. and I am wondering how things will turn out for her. (That is probably a post for a different type of support group).

Thank you again

[Mike]

It was a shock when I was diagnosed and took a while to move on. At that time, the only treatment available was a 48 week course of injections and pills that had grueling side effects. I only had about a 25-30% chance of full clearance and it didn't work.

I had to wait another 15 years for the current treatments that are available.

I would recommend that your daughter focus on her rehab, get a 1 year of sobriety under her belt, and move forward then.

Her greatest health concern right now is relapse, which, unfortunately, is part of the road to recovery.

Sometimes fear and trembling is the best medicine, as it makes a person reflect, forcing him or her to make life-style choices and live in the here and now.

I know that's a tough love stance - but one day at a time and baby steps are powerful life skills to be learned.

Best wishes, Mike