HIV Cure - discussion

[dico]

I've read too much about HIV Cure research. And after all these reading, I came to the conclusion that a cure is impossible for the time being. Indeed there is no clinical or even pre-clinical trial that cured infected people/monkeys. For 30 years all the trials have miserably failed.
Sangamo and the City of Hope failed as will surely Calimmune given that we are not able to change all the CD4 cells (at most one fourth).
All the therapeutic vaccines failed too.

The only hope we can have are the CMV vaccine and Vectored ImmunoProphylaxis (VIP). These vaccines have not even undergone a Phase I trial. The CMV vaccine is only efficient half the time in (healthy) monkeys. And we know that VIP could be efficient for a short time because the body will fight the produced antibodies.

What do you folks think about that?

[mecch]

When I got diagnosed I read a little bit then stopped. I figured, in my life, I have my areas of expertise and not enough time to really understand the research. Also, the research goes on and we are all going to get the significant news as it is discovered and announced. 
I have my job, my social life. My first HIV doc and then my second, two, were quite calm and certain that medical science already has the treatment and long-term prognosis for a new infection pretty much wrapped up, so what can one do.
I want all the infrastructure of the US to be renovated and improved, am I going to wring my hands and worry about when its going to happen. I want peace in the middle east.
etc etc
The cure will come.... But in the meantime we have to live a good life and use our time wisely.
Thats my take.

[thunter34]

The best cure for my infection is to go on living.

[wolfter]

30 years is a short amount of time in the grand scope of things.  HIV no longer controls my brain therefore I already cured that aspect.  Research has provided the tools to keep my body alive, therefore I don't give it much thought now a days.  I plan on living til I die.   

Just be careful of research overload, it can wreck you when you least expect it.

wolfie

[Jeff G]

A cure would be a tragic end to my career as a thread merger ... don't think I could bare it .

[wolfter]

that'll open all kinda of opportunities;

I luckily deleted them all before I hit post. 

Somehow, I think we'd still be left with the site as anyone infected before the advent of said cure will continue to need support well into our deaths.

For me, it's one of my top 5 methods of interacting with friends.  Therefore we could always maintain the LTS forum and just rename it something fancy and suitable.

[Jeff G]

If there is ever a cure I will move to an island paradise without internet .

[mecch]

if the "cure" is a oneshot deal offering no permanent immunity, I feel never in MY lifetime will the disease and new infections disappear....

[mecch]

I do worry about new treatment resistant STDS in the pipeline...  A cure for HIV, and people will go nuts and we will surely have permanent debilitating clap, or whatnot.
My unscientific observation in Western Switzerland is that more than half a decade of effective HIV treatment + the rather old Swiss Statement + knowing there is no "superinfection" + bareback culture - produced quite a lot of HEP C infections.  The new Hep C cure doesn't produce permanent immunity. 
So whats the future. People cycle through and pay the cost of a few Hep C cures (80K a pop?) and a few HIV cures (who knows, maybe 100K a pop?), but live with permanent herpes, clap, syphilis, and god knows what else.  Flesh eating bacteria?  By that epoch, I'll be quite old and unfuckable but I wonder for the younger generations.

None of which is to say that an HIV cure is a penny wise but a pound foolish.. 

I hope there is one and I'm sure everyone will be overjoyed.

[wolfter]

unfortunately, that's the case with many diseases especially ones of a sexual nature.  But it'd still be cheaper than our current options.

[dico]

Taking a pill a day is not the thing I fear about. Long term toxicities, side effets, resistance, and especially comorbidities (high risks of cancer, etc) are the bad aspects of current therapy. That's why an HIV Cure is such a priority.

For me the worst thing is that I am not able to find a partner because they all fear to be infected by me. I feel to be a monster that can infect other healthy people. That's why thinking about an HIV cure is such a relieve for me.

But back to the thread:
What about the two vaccines I wrote about at the end (CMV + VIP) ?

Could we have hope on them ?

[mecch]

Taking a pill a day is not the thing I fear about. Long term toxicities, side effets, resistance, and especially comorbidities (high risks of cancer, etc) are the bad aspects of current therapy. That's why an HIV Cure is such a priority.

For me the worst thing is that I am not able to find a partner because they all fear to be infected by me. I feel to be a monster that can infect other healthy people. That's why thinking about an HIV cure is such a relieve for me.

But back to the thread:
What about the two vaccines I wrote about at the end (CMV + VIP) ?

Could we have hope on them ?

Yeah but maybe the underlined issue is what you should figure out.

Do you know you are are not a monster, its just the others who think this.  Or still worry you are typhoid mary?

do you know there are a bunch of people who are willing to have serodiscordant relations?

[Miss Philicia]

For me the worst thing is that I am not able to find a partner because they all fear to be infected by me.

Is there some problem with dating someone else who is HIV+?

[wolfter]

I'm not too overly concerned with a vaccine for CMV as most humans have been exposed to it.  Beyond that, I got tired of reading. 

[Jmarksto]

dico; 


If you are interested in cure research because you are interested in science and research that is one thing.  If you are doing it because you feel like a monster that can infect others, that is more about self acceptance - and it will be easier to get others to accept you once you have accepted yourself.


JM

[dico]

This thread is not about me but about if you believe a cure is possible and how ?

I am confident that a cure is within reach but I am not aware of any clinical trial that had ŕ successful outcome.

[mecch]

For me the worst thing is that I am not able to find a partner because they all fear to be infected by me. I feel to be a monster that can infect other healthy people. That's why thinking about an HIV cure is such a relieve for me.

The thread is about you even if it makes you uncomfortable to consider some feedback you are getting about yourself.

The suggestion is, try to find ways to understand you are not a typhoid mary disease spreading monster.  Even if people may consider us this way, its extremely destructive to think about ourselves this way.   We don't need a cure to be normal people with rights to everything - job, housing, health, love, respect, and dignity.

[tryingtostay]

So what are the listed treatments, therapies, etc that have failed so far?  Well the latest few strong hopefuls?

[geobee]

I think that Picker's CMV / HIV vaccine is the best thing going. He's cured SIV in 50% of the monkey's that he's given his vaccine to (a hybrid of CMV/HIV). I think that you need to put your immune system permanently on guard, and his vaccine does that.

I also have some hope for the Sangamo trial.  By eliminating the viral vector (which you get antibodies to), they can give you more than one infusion of the modified T-Cells.  If you get enough of them, they may be able to turn the tide against the virus.

CalImmune is choice #3.  They seem to be moving pretty slowly tho. My sense is that stem cells are hard to work with.  Also, injecting modified stem cells seems a little scary to me.

[dico]

I agree with you about thé CMV vaccine.

But Sangamo is actually gene changing the stem cell too as Calimmune... So what you said about Calimmune is related to Sangamo too.

I am also impressed about the Winston research on interféron.

[tryingtostay]

What terms mean what?

Functional Cure ?
Vaccine ?
Therapeutic?
etc
etc

And what recent studies fall under each approach?

[dico]

I believe administrating for several weeks:
- a reinforced haart (for example complera + Dolutegravir) so as to eliminate all ongoing small scale replication
- plus a combinaison of immunotoxins (interferon + 3B3-PE38 + etc... ) to help the immune system destroy the infected cells
- plus a potent reservoir killer (auranofin + bso)
- plus an immune system booster such as a TLR7 agonist (such as the GS-9620 of Gilead)
- plus a combinaison of 3 potent broadly neutralizing antibodies (VRC07 + 10E8 + PGT128)  so that virus are eliminated even in places the antiretrovirals could not go (lymphoid nodes for example)
could help the immune system control HIV replication so that there would be no viremia detected even by ultrasensitive single copy assay (we can nowadays detect as far as 0,1 copy/ml).

Then we should contain the reservoirs by adminstrating both an antibody vaccine (passif antibody transfert or VIP of David Baltimore) and a Tcell vaccine (the CMV vaccine developped by Louis Picker).

I think we could attain a long term remission with such a strategy.

[dico]

There are lots of papers speaking about the CMV vaccine of Louis Picker, but we have less heard about the Conserv vaccine (developped in Oxford university).

What are your thoughts about the Conserv vaccine ?

Here is an interesting article: http://www.aidsmap.com/Vaccine-trials-where-next/page/2781072/#item2781077

[geobee]

Holy acronyms, Batman!  Dico -- I'm impressed!   The conserv vaccine seems brilliant to me -- breaking HIV into pieces and stitching it back again.  Wow. 

I like the CMV vaccine because it stays around forever.  As we've seen with the Mississippi baby, HIV can lay dormant for a long time. 

Thanks for posting the link re: Conserv.

[tryingtostay]

If you could have any one of the latest research projects to be successful which would you want it to be?

Personally I still have a hard time grasping some of the research whether it's making our immune system immune to it, or snipping the hiv from our DNA... I would think that the study at Temple is the best one for everyone, no?  I mean if it completely makes the virus a blank shooting infertile virus while making our cells immune to being infected, and furthermore removing the latent HIV virus in it's prepubescent stage from our cells then I choose that one.  Please correct me if I am wrong.. and who-ever reads this take it like a grain of salt because I am not sure if I got what the study at Temple is trying to do is correct. 

[Ptrk3]

I'm been reading a lot about "cures" lately, as I suppose many of us relatively new poz people tend to do.  Every day I check the Science Daily HIV site, just to keep up with things.  Folks here know about the Calimmune study.  In answer to your question, Tryingtostay, I think this one would be one I hope would someday work.  It would be done one time on an outpatient basis.  Here's a link to FAQ's:

http://www.calimmune.com/faq.php

[tryingtostay]

Can someone point out some of the fundamental differences between Cal Immune and the study at Temple U ?  Even in 'Vs' form would be cool

[leatherman]

I'm been reading a lot about "cures" lately, as I suppose many of us relatively new poz people tend to do.  Every day I check the Science Daily HIV site, just to keep up with things.

hopefully you'll get over that waste of time soon. LOL

[Ptrk3]

Leatherman:  I know that many LTS's are weary of the many false promises of imminent cures, and I respect that opinion because of one disappointment after another over the years, despite the miraculous development of ARV's and the subsequent success of them for so many of us.  I also respect that LTS's have much more knowledge than I do, having just completed my first year of diagnosis (I was diagnosed August 2013, in hospital, with a CD4 of 9, VL of 111,000, and PCP, having no clue that I had even been infected), so please be honest:  do you really think a "cure" is unlikely in our lifetimes and that looking for literature on potential cures a waste of time?

I still feel so very sad about my HIV status.  It's the first thing I think of when I awake, and the last thing I think of when I drift off to sleep.  I'm doing well enough on Atripla (never missed a dose).  VL is undetectable and CD4 now around 130.  Yet, I so very much hope for a functional or sterilizing cure.  I know no one has a crystal ball, but do most folks out there think a cure won't happen in the next decade or so.  If so, how do you cope?  I think sometimes that hope for a cure keeps me going and I don't know for sure I could keep going if prospects of a cure were hopeless.  Please help me understand how you keep going so I can learn how to do so myself. 

[Jeff G]

Hi PTRK3 . In time I hope you can accept that sometimes bad things happen to good people and then we are left to be the very best we can be despite our lives throwing us a roadblock . Its true that HIV changes ones life forever but that does not mean you are going to have a bad one . If you plan for a future you can have a bright one, so please give yourself time to work through this as ALL of has had to do, we have that in common . If you plan to live the rest of your life as HIV positive, if and when a cure comes you will be way ahead of the game .

[Ptrk3]

Thanks, Jeff G.  I appreciate your kind words.  They are helpful.

I do take things a day at time (sometimes, it seems, a moment at a time) and am still working through (for me) the shameful/guilty thoughts I sometimes experience with this disease, though I intellectually understand HIV is what it is, an insidious virus, no more, no less.  I know it may not be rational to feel ashamed, but I do sometimes feel that way and feelings, too, are what they are.

However, since I have been reading this forum for some time now, I have been getting better with "acceptance," largely because of the dignity displayed by so many people who regularly post and the community you all have formed, such diversity, too!  You are all so thoroughly decent, and so many of you have endured for so long and have suffered the loss of partners, health, jobs, etc., not only from this disease but from the unrelated tragedies that life indiscriminately and most cruelly throws our way (Zach, for instance, with the unspeakable loss of a young son), any one of which is too much for anyone to handle, so we must try to do it together, then.  I am in awe of your strength, resilience, and humor to carry on.

Also, because of this forum, I did participate in the University of California (San Francisco) OSHER study (thanks, to your initial post, Jeff G.), and recently participated in a CDC survey on HIV through my ID physician and my State Department of Health.  Like all of you here, I want to help find some meaning in this senseless disease, which is probably why I hope for a cure.

But you are right, Jeff G., to point out, in essence, that sometimes enduring with dignity is enough.  We are still here, and that is a good thing to be sure, waiting for a cure that may not come, but living our lives as best we can.  I agree with you there.

Still, I plan to keep a lookout for information on cure, ever hopeful, part of my DNA now, like HIV itself, but will strive to keep all things in perspective.

[Jeff G]

Thanks for you understanding PTRK . I almost regretted posting what I did because I was afraid you would take it as me diminishing where you are emotionally right now and that is far from my intention . I'm the poster child/old man on what not to do and how to get it right sometime or eventually . I know from hard lessons learned that we must take an active role in moving on in life because if we cant find that in ourselves or be willing to the the hard work to get there then we create our own tragic destiny . I might also add I did not get to where I am today if others had not invested in me or if I were to proud to accept or seek help when it was needed . I damn near didn't make it past 40 for refusing to accept my life as it was and then build upon it .

I will keep an eye out for that cure along with you ... If there is ever a cure I want to move somewhere tropical where its not too hot and not too cold and find the Goldilocks zone so I never have to answer another Am I infected post and I can get off the damn computer and put my feet up .   

[Ptrk3]

I hope that the day comes soon enough for you to put your feet up in the Goldilocks zone of your choosing!  BTW:  you are very respectful to many of those folks in that topic area, but of course many are genuinely afraid, even when concerned about shall we say, risk free, activities ("I think I shared a Q-tip with a prostitute when I cleaned my ears after a blow job in an Amsterdam shooting gallery," etc.).

In the meantime, I found this posted on a Brit site called Beyond Positive (maybe Theyer knows of this site).  Anyway, worth a read:

http://www.beyondpositive.org/2014/08/08/boy-cried-cure/

[mecch]

, so please be honest:  do you really think a "cure" is unlikely in our lifetimes and that looking for literature on potential cures a waste of time?

I know you asked leatherman but I will comment anyway.

remember - your statement above is apples and oranges.

1) i think there will be something like a "working cure" -- where we stay HIV+ but the reservoirs are pretty emptied out, and we stay on minimal medication...

2) its somewhat a waste of time people who are not in the HIV research field, or public health, to be always looking at literature.  There is a lot of PR in the way "news" is announced and also who has time and the smarts to develop the expert expertise to understand much of it?  There are probably thousands of expert minds working on such things and when anything solid comes along, the world will know about it and respected people will explain it to us laymen.  Thats why its a bit of a waste of time. 

If you want to contribute to the world living well with hiv, and you are not a research expert, put your time to something that does contribute to others and has an impact.... 
bravo, for the studies you have put yourself in. 

Leatherman generously puts a lot of his time towards helping others with HIV so isn't that a better use of time?

[mecch]

You could read research 40 hours a week and unless you are involved in research, that time will mean nothing to the world or your own life. How many hours do you need to read, to get to the point where you can chill out about having HIV and trust that what we have now is enough to go about your life without the carrot of a cure?

[Ptrk3]

Thanks, mecch.  Your comments are helpful and most welcome, and I appreciate your taking the time to respond.

Yeah, you're right, too, alas, across the board.  I'm not a researcher and it is easy enough to get caught up in the "black hole" of things.  I guess I'm still a bit stuck in the "denial" stage of diagnosis, ruminating on a cure because it will restore me to the status quo ante and I can feel "clean" again.  It's something that all of us have to work through, and I may be slower than some--or even most--others. 

You clearly are in the "acceptance" phase of things, as you point out what (Mr.) leatherman and others do, volunteering, "doing" things that you are better equipped to do.  That's a place where I want to be some day soon.  I'll keep trying, a step at a time on the rest of the journey to where ever it is we're going.

[mecch]

Consider this - every hour you spend looking at cure research, to feel saved, or cleaned, means an hour you are actually feeling doomed, and dirty.  The cure isn't happening this year or next year, right?  That is a LOT of negative energy put into pipe dreams and none of it is constructive, at this point, for you. You probably know enough about the mechanics of HIV infection already...

So how about just living as normal as possible and not having to think that you will be saved or cleaned....  You are clean. And you are already well enough saved from HIV sickness...  Its not perfect, but go with that.  Its a mistake to be pining for lost Edens, or a past that is never coming back.

[Ptrk3]

Mecch:  thanks for your patience and kind words and validation on how to live with the proper perspective.  I appreciate it.

[drewm]

I read the occasional news about research etc but like others have suggested, it's simply not a priority for me. Way too much going on in my life to dedicate to reading and thoroughly understanding all of the research news. This disease is under control for me and there is no reason to expect that to change and if it does, there are other drugs, regimens etc that I can try. I simply refuse to ponder on HIV/AIDS all the time.

I can allow this disease to define me or I can define it. I choose the latter. It is what it is. A virus that is treatable and manageable. Nothing more. Nothing less.

[Ptrk3]

Thanks, drewm, for the sensible words.  I should also learn from the OSHER study I recently took part in (Jeff G. first posted about it in the forums).  One of the lessons is on "Gratitude," and there are exercises to keep a "Gratitude" journal.  I am grateful for my health at present, grateful that the Atripla has done its job, and grateful to the community that is this forum, so I am grateful for enough in the here and now.  If there is a cure in the future, I will be grateful for it then.  Everything comes in time.  For now, I remain grateful that the disease is under control for me and those on this forum for whom things are also under control.  I won't let this disease define me, either.

[London2013]

Found the discussion here - as always! - very interesting. As a self-professed geek, I definitely check any research news that look interesting as they come up on this website, in the forums and sometimes I browse through some of the medical journals to see if anything new and interesting has come up.

Now, despite being pretty literate in scientific journals, I have no background in medicine and my Biology stopped at A levels, so hardly a budding research scientist here. However, I absolutely don't think that reading up on the virus is a waste of time. Suggesting that doing so is tantamount to a lost life because I'm not a lab-coat-wearing science boffin would be as absurd as saying that reading Tolstoy unless I'm a budding author is pointless, or that watching the rugby championship without playing is a non-starter. People spend their days doing all sort of nonsense, and reading up on the research that pertains to the virus that we all have is hardly pointless.

Now the point which is raised about 'acceptance' is well received. I'm pretty new to HIV and admittedly had a massive hill to climb when it came to educating myself about it. I started with trying to understand what are the immediate medical impacts on my life. Getting my head around how my ATRIPLA works, seeing how quickly it allowed me to become undetectable and realising that my life expectancy is pretty similar to someone who isn't infected, have all been really important for my 'acceptance'. It allowed me to move on from a place of utter helplessness into accepting I now have HIV, but that it in no way controls me.

By way of analogy, had I been diagnosed with colon cancer, I'd sure as hell be reading up on who the best surgeons are, what treatments seem most efficacious and how the field is developing. Similarly with HIV, I'm now aware of some of the history of cART, what the pipeline looks like (pretty amazing, btw!) and what sort of avenues are currently being developed in both treatment and cure research. I find the research pertaining to long-acting injectable antiretrovirals really interesting, and potentially these could make a real difference to my daily life. I travel a lot and remembering to take the pills with me, dosing the right way across time zones and entering countries that have entry barriers could all be made much easier! So hurrah for the boffins working on this stuff!
 
I accept that people can obviously become obsessive, and I think I was probably a little obsessive when I first found this forum. I'd check new research daily (but I'd also be reading about stories of other newly poz people, and have learnt a lot from the long term survivors' posts!). However, I believe this is just a phase. Perhaps some would still like to suggest that I've not 'accepted' my status as I regularly check this forum and read journals. I respectfully disagree. If I spend an hour a two a week doing this, I think that's probably healthier than hanging on discussions forums other than Research hours on end every day! But that's my 2 pence's worth, take it or leave it...   

[Ptrk3]

Well, London2013, two pence sterling is worth almost a nickel here, so  more valuable than you may think!  So, I'll take it.

Thanks for your insights.  So you know, Leatherman PM'd (private-messaged) me.  He was just trying to make sure that I lived in the here and now.  His perspective is that of a long-term survivor, so his heart is in the right place and I took no umbrage.  Everything in moderation, as they say.

I, too, am interested in the once-a-month injection that is being researched or, perhaps, even trialed these days.  I'm on Atripla, and have had no ill side effects (since I think the wild dreams are cool!).  I take it at night before I go to bed.  It's not that much of a problem traveling, even across time zones (at least for me so far).  Atripla tablets could be a multivitamin (except for the tell-tale 123 on it), for all most entry officials know (unless you mean going to those places where HIV positives are barred any entry--mercifully a small number of countries and countries I would not go to anyway, unless for something work related, except for, maybe, Singapore, but I'm starting to ramble).

Most of the literature gives you a multi-hour window each day for Atripla, so that has not been a big deal for me.  But you know that, since you're on it, too.

Nonetheless, monthly injections would be a great improvement, sort of a "one and done" each month, and no pill containers would be nice and so would not seeing the Atripla container in the medicine chest, etc.  It would also be nice not to have, in my case, the once every 90-day concern that the three-month supply arrives by post (it's far cheaper with my insurance to get it through the post than a retail pharmacy, $80 USD for a three month supply rather than, gulp, $1,500 USD for the same supply if I picked it up at a retail pharmacy).  I, too, was very quickly undetectable on Atripla, so I'm happy with it so far.

Glad to hear you are doing well, too, and keep an eye on cutting-edge research.  I wish you continued health and all the best (I've relatives in Birmingham and have been there and in London many times).  Cheerio (if anyone even says that anymore in your neck of the woods) for now.

[elf]

there is no cure
everybody get a drink!

[Ptrk3]

True.  No cure yet, but "... a man's reach should exceed his grasp, Or what's a heaven for?" (from Andrea del Sarto, by Robert Browning).

It's still fine to have a drink (or several), though!