Aa
Sofosbuvir + Riba 24 weeks
Dear all , a very good day to you all and i hope that my message finds you all in better health and spirit this morning .
I am 42 y / Male and live in New Delhi , India , I was Infected and diagnosed with Hcv geno 1a in the beginning of 2007 .
I went through 23 weeks of soc ( inf + riba ) and has to be taken off due to massive side effects of the two drugs which nearly or actually did cripple me .
I was originally going to be treated for 48 weeks tho .
I did clear the virus on the 12th week of tx and stayed clear till the 23rd week while under tx , but relapsed 3 weeks after stopping .
It has now been nearly 7 years since my tx and i do still have the virus , i did get a liver biopsy in early 2011 and my results showed Fibrosis as " 0-1 " with no other problems .
I also get my viral load done and it was pretty hight then , i have not bothered with it again as the viral load can fluctuate a lot depending on fever / stress etc i feel and it is a very expensive test to get done here in India + the fact that insurance does not pay for anything here ( which is another long story - lol ).
i would also like to mention that i visited my hepatologist about 5 months ago and he performed a fibroscan with some new machine , the result was " median 4.4 " he said that i was doing fine and should wait for new tx to come .
Now i see that Sofosbuvir by Gilead is out in the market and that it can be purchased with a docs prescription from the usa or uk .
There is also a company here in india that could provide the sofosbuvir for me but at the market price of nearly $80.000 ... whoaaaaaaa ....
sadly i cannot like many others afford that .
Lastly and most importantly , there is a hospital here in New delhi who is starting the trials for the Sofosbuvir + ribavirin combo and i have met the doctor in-charge of the study . This study is a trial being conducted by Gilead to enter the Indian market .
My Doctor has not promised me anything yet , but has asked me to meet him again and see how and if he can get me on the trial .
THE QUESTION is :) ... should i go for it !!! This study would be 400 mg Sofosbuvir daily + 1200 mg of ribavirin ( i am 80kgs - so thats weight based and fine ) and would be for 24 weeks .
The cure rate on this study is 75% as per many trial results .
I do know that Gilead is in talks with many pharma companies in India to give them the patent and also Gilead may get the this drug to india at a cost of $900 - $1000 for 12 weeks tx in the future , but the future may be 2-5 years , who knows !! .
There may also be a trial of " sofosbuvir + ledipasvir + Riba" for 12 weeks in the future in india which i could try for but that too is not certain yet .
What " I " would like to do is 12 weeks of sofosbuvir with riba and interferon and get it over and done with ( i would somehow mange it and i know i could manage it ) but that dosent seem to be happening as i dont have and neither can i afford to buy the Sofosbuvir on my own .
I am just utterly confused about the fact " should i get on this trial with a 75% cure rate " or should i hold off till something better with a higher cure rate which comes along .
I am currently healthy and so is my liver , i do have fatigue and a lot of it , but that only seems to be my issue with hcv and the fact that my alt is always a bit above normal . ( alt has always been raised for past 7 years ) .
i hope you will share your thoughts with me and advice me as to what you think would be a good step for me to take .
i wish you well
God bless and warm regards
## incase there is another thread relating to this tx , please accept my apologies in advance and do guide me to that thread .
thank you again .
I am 42 y / Male and live in New Delhi , India , I was Infected and diagnosed with Hcv geno 1a in the beginning of 2007 .
I went through 23 weeks of soc ( inf + riba ) and has to be taken off due to massive side effects of the two drugs which nearly or actually did cripple me .
I was originally going to be treated for 48 weeks tho .
I did clear the virus on the 12th week of tx and stayed clear till the 23rd week while under tx , but relapsed 3 weeks after stopping .
It has now been nearly 7 years since my tx and i do still have the virus , i did get a liver biopsy in early 2011 and my results showed Fibrosis as " 0-1 " with no other problems .
I also get my viral load done and it was pretty hight then , i have not bothered with it again as the viral load can fluctuate a lot depending on fever / stress etc i feel and it is a very expensive test to get done here in India + the fact that insurance does not pay for anything here ( which is another long story - lol ).
i would also like to mention that i visited my hepatologist about 5 months ago and he performed a fibroscan with some new machine , the result was " median 4.4 " he said that i was doing fine and should wait for new tx to come .
Now i see that Sofosbuvir by Gilead is out in the market and that it can be purchased with a docs prescription from the usa or uk .
There is also a company here in india that could provide the sofosbuvir for me but at the market price of nearly $80.000 ... whoaaaaaaa ....
sadly i cannot like many others afford that .
Lastly and most importantly , there is a hospital here in New delhi who is starting the trials for the Sofosbuvir + ribavirin combo and i have met the doctor in-charge of the study . This study is a trial being conducted by Gilead to enter the Indian market .
My Doctor has not promised me anything yet , but has asked me to meet him again and see how and if he can get me on the trial .
THE QUESTION is :) ... should i go for it !!! This study would be 400 mg Sofosbuvir daily + 1200 mg of ribavirin ( i am 80kgs - so thats weight based and fine ) and would be for 24 weeks .
The cure rate on this study is 75% as per many trial results .
I do know that Gilead is in talks with many pharma companies in India to give them the patent and also Gilead may get the this drug to india at a cost of $900 - $1000 for 12 weeks tx in the future , but the future may be 2-5 years , who knows !! .
There may also be a trial of " sofosbuvir + ledipasvir + Riba" for 12 weeks in the future in india which i could try for but that too is not certain yet .
What " I " would like to do is 12 weeks of sofosbuvir with riba and interferon and get it over and done with ( i would somehow mange it and i know i could manage it ) but that dosent seem to be happening as i dont have and neither can i afford to buy the Sofosbuvir on my own .
I am just utterly confused about the fact " should i get on this trial with a 75% cure rate " or should i hold off till something better with a higher cure rate which comes along .
I am currently healthy and so is my liver , i do have fatigue and a lot of it , but that only seems to be my issue with hcv and the fact that my alt is always a bit above normal . ( alt has always been raised for past 7 years ) .
i hope you will share your thoughts with me and advice me as to what you think would be a good step for me to take .
i wish you well
God bless and warm regards
## incase there is another thread relating to this tx , please accept my apologies in advance and do guide me to that thread .
thank you again .
Oops!! That is, will get the results on 06-08-15!
Can't even blame that on Auto Correct - I turned it off to avoid mistakes. I guess I just want to make the mistakes myself! hee hee.
P
Can't even blame that on Auto Correct - I turned it off to avoid mistakes. I guess I just want to make the mistakes myself! hee hee.
P
I was/am Gt3. Started tx with the same meds (Sol/Riba) for 24 weeks on 6-16-14, and took last pills on 12-1-14. Made SVR12, but, since it is Gt3, Dr and I wanted the EOT 24 Labs. They were dome 5-20-15. Will see Dr on 6-8-13, BUT, I am feeling so well and have energy to do things I haven't even thought about for years and years, so I believe the news will be good? Praying so anyway. I pray every day for eveyone with HepC diagnosed or undiagnosed, and will continue to do so, so know that someone is praying for you.
Your oart is to keep a positive attitude eat a liver friendly diet, drink LOTS of water, and do what exercise you can (but don't over do it) AND rest when your body tells you to.
I am always happy, as is everyone else on here to answer questions, give moral support and caring and general cheerleading.
You go, girls! Get that dragon!
Blessings,
Pat
Your oart is to keep a positive attitude eat a liver friendly diet, drink LOTS of water, and do what exercise you can (but don't over do it) AND rest when your body tells you to.
I am always happy, as is everyone else on here to answer questions, give moral support and caring and general cheerleading.
You go, girls! Get that dragon!
Blessings,
Pat
I am so glad I found this forum....I am just starting paperwork to start treatment I am also G3 ....I am so scared to do this....after reading most of these posts I know I am doing the right thing .....
Thanks linlees
Thanks linlees
Hi. I wanted to add that I just started this same set of medications 17 days ago and so far so good, I feel great. (Sofosbuvir + ribavirin combo) I will also be on it for 24 weeks. I would definitely say to go for it unless you want to try Harvoni. I'm a G3 so Harvoni wasn't an option.
Dear all,
Could you be so kind to help me wiith a trusted source to buy hepcinat or myhep?
My mother is really sick and needs urgent treatment and the medicine sold by Gilead is not yet approved in my country and if it will be in the near future probably it will cost a fortune.
Thanks a lot and best of health!
Sebastian
Could you be so kind to help me wiith a trusted source to buy hepcinat or myhep?
My mother is really sick and needs urgent treatment and the medicine sold by Gilead is not yet approved in my country and if it will be in the near future probably it will cost a fortune.
Thanks a lot and best of health!
Sebastian
Hi rahul ,just got your message and have replied with all details .
cheeers and best wishes .
cheeers and best wishes .
Hi ! Hope you got my message i sent previously if you could let me know which hospital in delhi does that scan you mentioned and which doctor you have been consulting. i could use your help pls thanks
Rahul
Hep c
genotype 1
Rahul
Hep c
genotype 1
Hi ! i am also in Delhi , i will appreciate your help very much.i was diagnosed in 2005 but probably got it during a blood given to me in 1987. being a father of 3 young kids i am looking forward to being cured and healthy
which hepatologist do you visit.
could you also write me on my personal email : ***@****
with more details.. pls also let me know if this trial thing can be availed by me. thanks again for your reply.
Rahul
which hepatologist do you visit.
could you also write me on my personal email : ***@****
with more details.. pls also let me know if this trial thing can be availed by me. thanks again for your reply.
Rahul
Dear Dee , thank you for the warm welcome .
I appreciate your input and now have a feeling that i will wait for Harvoni .
I do have my tests in april and hope that they will all be fine .
I am at fibrosis 1 , and my last fibroscan showed a score of 5.2 on the chart , the technician who did the test said that anything below 7 was considered ok , so yes i would try and keep my liver healthy and below the 7 Limit :)
The one thing i LOVE which u mentioned in your post is " ((Of course you should listen to your doctor but your doctor doesn't have to experience interferon. )) "
How many times i have wanted to say this to the ones that say "oh its nothing and you are just over reacting " Jeeeeez .... LOL
My best wishes to you and i shall be around more .
God bless and warm regards .
I appreciate your input and now have a feeling that i will wait for Harvoni .
I do have my tests in april and hope that they will all be fine .
I am at fibrosis 1 , and my last fibroscan showed a score of 5.2 on the chart , the technician who did the test said that anything below 7 was considered ok , so yes i would try and keep my liver healthy and below the 7 Limit :)
The one thing i LOVE which u mentioned in your post is " ((Of course you should listen to your doctor but your doctor doesn't have to experience interferon. )) "
How many times i have wanted to say this to the ones that say "oh its nothing and you are just over reacting " Jeeeeez .... LOL
My best wishes to you and i shall be around more .
God bless and warm regards .
Dear Dointime , thank you so much for your reply , I really appreciate it .
It seems i will wait , my family too seems against my doing inf again as they saw what it did to me last time .
its just the desire to get rid of this darn hep . I am sure you will relate with my feeling .
Also i did manage to speak with the Major Indian partner of Gilead in India today ( Mylan ) , they said they were not sure of when the Harvoni would come , probably In a year or so , but they would be launching Sofosbuvir in India In the 1st week of May 2015 .
May i ask how you know about the Harvoni launch this winter In India , honestly i would not be surprised if the same happened as i do realize that many of the Generic companies would be rushing and putting a lot of effort into Launching them before each other ... I hope i am making some sense here ... lol .
My best wishes to you and thank you again for all the info ..
God bless and warm regards .
It seems i will wait , my family too seems against my doing inf again as they saw what it did to me last time .
its just the desire to get rid of this darn hep . I am sure you will relate with my feeling .
Also i did manage to speak with the Major Indian partner of Gilead in India today ( Mylan ) , they said they were not sure of when the Harvoni would come , probably In a year or so , but they would be launching Sofosbuvir in India In the 1st week of May 2015 .
May i ask how you know about the Harvoni launch this winter In India , honestly i would not be surprised if the same happened as i do realize that many of the Generic companies would be rushing and putting a lot of effort into Launching them before each other ... I hope i am making some sense here ... lol .
My best wishes to you and thank you again for all the info ..
God bless and warm regards .
Hey there! Welcome back, good to see you.
Since you have little liver damage I would wait
After treating twice with interferon and taking forever to improve; if you have a choice, wait for Harvoni.
Just my humble opinion. Of course you should listen to your doctor but your doctor doesn't have to experience interferon.
I have done both, Pegintron was much more difficult than Pegasys.
I wish you the very best
Dee
Since you have little liver damage I would wait
After treating twice with interferon and taking forever to improve; if you have a choice, wait for Harvoni.
Just my humble opinion. Of course you should listen to your doctor but your doctor doesn't have to experience interferon.
I have done both, Pegintron was much more difficult than Pegasys.
I wish you the very best
Dee
To me this is a no-brainer, I would wait for Harvoni. Harvoni should be available in india by this winter. You are already in Delhi so you don't even need to travel to arrange it.
My reasons are this:
Why take the risk of failing a treatment when Harvoni has a very high rate of success, almost 100%. These are serious drugs and you don't want to put any more into your body than you have to. Your liver is still ok, even though you don't feel so good. You can wait. Also, retreating with sovaldi after a sovaldi failure may not be as simple as you think. It will probably involve a longer duration treatment than the first time.
I really hope that you will wait for Harvoni!
dointime
My reasons are this:
Why take the risk of failing a treatment when Harvoni has a very high rate of success, almost 100%. These are serious drugs and you don't want to put any more into your body than you have to. Your liver is still ok, even though you don't feel so good. You can wait. Also, retreating with sovaldi after a sovaldi failure may not be as simple as you think. It will probably involve a longer duration treatment than the first time.
I really hope that you will wait for Harvoni!
dointime
Dear Kim Madam , a good day to you and thank you for your kind reply and suggestion .
Yes Interferon scares me ): , I do have a routine followup fibroscan , liver ultrasound and vl blood test in the second week of April and will also be meeting my hepatologist at the same time .
I will surely get back here and update the status of my reports and ask for everyones guidance again .
Thank you so very much again , and now i see why my hepatologist would rather prefer 6 months of riba and sof instead of adding the inf for my tx .
My best wishes to you .
god bless and warm regards .
Yes Interferon scares me ): , I do have a routine followup fibroscan , liver ultrasound and vl blood test in the second week of April and will also be meeting my hepatologist at the same time .
I will surely get back here and update the status of my reports and ask for everyones guidance again .
Thank you so very much again , and now i see why my hepatologist would rather prefer 6 months of riba and sof instead of adding the inf for my tx .
My best wishes to you .
god bless and warm regards .
Welcome Back. Without a doubt option B. Now, I know 6 months is a long time but this is the reason why. Interferon has basically been taken off the market in the US. It has a bad rap for potential problems down the road. It even has been given a name Interferon Syndrome and for some has decreased their quality of life. If I'm not mistaken you can be awarded disability benefits if you suffer from this syndrome. If you go to Medhelps
Hep C post treatment you will see a number of people still affected by the aftermath of Interferon Tx. Personally I would be somewhat nervous taking it but that's only my opinion.
Harvoni on the other hand is a great drug for geno 1s, but you would have to wait a year. I would never advise anyone to wait for Tx ever, but with Stage 1 Fibrosis you likely could. Again, if it were me I would want to treat ASAP and go again with option B but that's your call.
Will tell you as a Geno 2 I treated with the Sofosbuvir/Ribavirin for 3 months and did reach SVR. Had I been geno 1 definately would have gone for 6 no problem. My Riba was 1200 mg and never needed a reduction. Most people would rather not take Riba but it's not that bad. The only bad side effect that was bothersome was extreme fatigue toward the end.
Hope that others chime in and give their opinions as well. Good Luck with whatever you choose and keep us up to date on how your doing. The way I see it is that we are all so fortunate to have these miracle drugs at our disposal. I will forever be grateful.
......Kim
Hep C post treatment you will see a number of people still affected by the aftermath of Interferon Tx. Personally I would be somewhat nervous taking it but that's only my opinion.
Harvoni on the other hand is a great drug for geno 1s, but you would have to wait a year. I would never advise anyone to wait for Tx ever, but with Stage 1 Fibrosis you likely could. Again, if it were me I would want to treat ASAP and go again with option B but that's your call.
Will tell you as a Geno 2 I treated with the Sofosbuvir/Ribavirin for 3 months and did reach SVR. Had I been geno 1 definately would have gone for 6 no problem. My Riba was 1200 mg and never needed a reduction. Most people would rather not take Riba but it's not that bad. The only bad side effect that was bothersome was extreme fatigue toward the end.
Hope that others chime in and give their opinions as well. Good Luck with whatever you choose and keep us up to date on how your doing. The way I see it is that we are all so fortunate to have these miracle drugs at our disposal. I will forever be grateful.
......Kim
Dear all A good day again to everyone , I am now bumping this post up and reallllllyyyyyy neeed advice from you Kind people .
I read the post above made my me nearly 1 year ago and now have some news to add to it , also i need you all to kick me in my rear and MAKE ME go ahead with treatment . lol :)
OK so the update is as follows :
Gilead had partnered up with 7 Indian companies in September last year to manufacture Generic sovaldi in India
Yesterday the Sovaldi was launched in India at a cost of Indian Rupees ( approx 20.000 / about $300 for 28 tablets ) and it is now readily available over the shelf with a Docs prescription . I have already spoken to the company representative and he said i could get it as early as in 1 day if i wanted .
i will post the link of the launch below .
Question is , should i do sofosbuvir + inf and weight based riba for 3 months now and get this done and over with OR wait for the launch of Harvoni in India which would be in about 6 months - 1 years time . . and would probably be the same price as what it would cost me for doing the current riba + Sof + inf tx ..
So really the cost matter now is not an issue as i can thankfully and by the grace of God afford the meds .
Also i would like to mention that i did meet my doc about a month ago and he prescribed for me Sof + 1200 mg Riba for 3 months and wrote in Brackets ( can be extended to 6 months . )
I asked him if i could do riba + sof + inf for 3 months and he outright said NO !!! i dont know why tho !!
so to summarize my confused + excited + anxious brain , what should i do !!
1) Geno 1A
2) 42 Yrs
3) Viral load as per last test was 16 million +
4) fibrosis stage 1
5) ALT & AST 120 / 80
A) Riba and inf and sofosbuvir for 3 months
B) Riba + Sofosbuvir for 6 months .
C) Riba + Sofosbuvir + Inf For 3 months and then maybe another month of only Sofosbuvir and Riba !!!
I know i am Utterly confused and anxious Atm and maybe coming across as a complete Jack #### , but i really need to be guided in the right direction and need a hand on my shoulder ..
I hope you all will please bear with me and suggest a way forward .
My best wishes to you all .
God bless and warm regards ..
http://economictimes.indiatimes.com/industry/healthcare/biotech/pharmaceuticals/zydus-cadila-launches-gileads-hepatitis-c-drug-in-india/articleshow/46596099.cms
I read the post above made my me nearly 1 year ago and now have some news to add to it , also i need you all to kick me in my rear and MAKE ME go ahead with treatment . lol :)
OK so the update is as follows :
Gilead had partnered up with 7 Indian companies in September last year to manufacture Generic sovaldi in India
Yesterday the Sovaldi was launched in India at a cost of Indian Rupees ( approx 20.000 / about $300 for 28 tablets ) and it is now readily available over the shelf with a Docs prescription . I have already spoken to the company representative and he said i could get it as early as in 1 day if i wanted .
i will post the link of the launch below .
Question is , should i do sofosbuvir + inf and weight based riba for 3 months now and get this done and over with OR wait for the launch of Harvoni in India which would be in about 6 months - 1 years time . . and would probably be the same price as what it would cost me for doing the current riba + Sof + inf tx ..
So really the cost matter now is not an issue as i can thankfully and by the grace of God afford the meds .
Also i would like to mention that i did meet my doc about a month ago and he prescribed for me Sof + 1200 mg Riba for 3 months and wrote in Brackets ( can be extended to 6 months . )
I asked him if i could do riba + sof + inf for 3 months and he outright said NO !!! i dont know why tho !!
so to summarize my confused + excited + anxious brain , what should i do !!
1) Geno 1A
2) 42 Yrs
3) Viral load as per last test was 16 million +
4) fibrosis stage 1
5) ALT & AST 120 / 80
A) Riba and inf and sofosbuvir for 3 months
B) Riba + Sofosbuvir for 6 months .
C) Riba + Sofosbuvir + Inf For 3 months and then maybe another month of only Sofosbuvir and Riba !!!
I know i am Utterly confused and anxious Atm and maybe coming across as a complete Jack #### , but i really need to be guided in the right direction and need a hand on my shoulder ..
I hope you all will please bear with me and suggest a way forward .
My best wishes to you all .
God bless and warm regards ..
http://economictimes.indiatimes.com/industry/healthcare/biotech/pharmaceuticals/zydus-cadila-launches-gileads-hepatitis-c-drug-in-india/articleshow/46596099.cms
Dear Nan and Zooz , thank you for your kind input .
I will be seeing my Hepatologist in about 3 hours from now and will be getting more updates and see how and if he can work out the trial from me now .
i can understand what you both are trying to say , its always a pleasure and very re-assuring to hear the opinion of fellow heppers .
the thing that scares me is the sides of the Riba and how it would leave me half functional in daily life .
I try to keep healthy and working out moderately for an hour a day ( jogging / brisk walking and doing a few weights ) is something that i look forward to .
i just feel bad that i will have to give it up for 6 months )-: as i am not too sure i will be able to exercise when on this tx ..
I will surely get back to you both regarding how my appointment goes .
best wishes and god bless .
I will be seeing my Hepatologist in about 3 hours from now and will be getting more updates and see how and if he can work out the trial from me now .
i can understand what you both are trying to say , its always a pleasure and very re-assuring to hear the opinion of fellow heppers .
the thing that scares me is the sides of the Riba and how it would leave me half functional in daily life .
I try to keep healthy and working out moderately for an hour a day ( jogging / brisk walking and doing a few weights ) is something that i look forward to .
i just feel bad that i will have to give it up for 6 months )-: as i am not too sure i will be able to exercise when on this tx ..
I will surely get back to you both regarding how my appointment goes .
best wishes and god bless .
I would definitely go for it. I made the same mistake 1 year ago when I waited out and missed on a clinical trial here in Egypt and now I have to pay thousands of pounds to treat. I believe the cure rate is also more than 75% with Sofosbuvir and Riba, depends on your genotype, mine is 4.
Go for it, this treatment has minimal side effects, even 75% is a BIG chance, there's no resistance to this treatment so if it doesn't work you can try more options in the future, it's free, and even if it doesn't work at least you've bought your liver some time off this constant attack by hep c.
All the best for you
Go for it, this treatment has minimal side effects, even 75% is a BIG chance, there's no resistance to this treatment so if it doesn't work you can try more options in the future, it's free, and even if it doesn't work at least you've bought your liver some time off this constant attack by hep c.
All the best for you
THE QUESTION is :) ... should i go for it !!! This study would be 400 mg Sofosbuvir daily + 1200 mg of ribavirin ( i am 80kgs - so thats weight based and fine ) and would be for 24 weeks .
The cure rate on this study is 75% as per many trial results .
.... or should i hold off till something better with a higher cure rate which comes along . "
My advice is this "a bird in the hand is worth two in the bush". Translated to your situation - you have an opportunity to get into a trial that will provide you with free meds as opposed to waiting for something which may or may not be available for 2-5 years and you will have to probably pay for". To me it's a "no brainer".
There is no resistance issues with this treatment so you can retreat with a better treatment if necessary in the future. Instead of thinking of it as only 75% were cured on on this treatment, try thinking it as only 25% were NOT cured. I'd take those odds, especially if it won't cost me anything.
Best of luck to you.
Nan
The cure rate on this study is 75% as per many trial results .
.... or should i hold off till something better with a higher cure rate which comes along . "
My advice is this "a bird in the hand is worth two in the bush". Translated to your situation - you have an opportunity to get into a trial that will provide you with free meds as opposed to waiting for something which may or may not be available for 2-5 years and you will have to probably pay for". To me it's a "no brainer".
There is no resistance issues with this treatment so you can retreat with a better treatment if necessary in the future. Instead of thinking of it as only 75% were cured on on this treatment, try thinking it as only 25% were NOT cured. I'd take those odds, especially if it won't cost me anything.
Best of luck to you.
Nan
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