Not enough efforts to find the cure

[xman]

In 25 years of the HIV epidemic great progress was made and the medicines available helps people with the disease to live like healthy ones a normal live span. But since 1996 when HAART became available nothing more potent in terms of treatment came out and we are still waiting for it. The disease is now treatable but the stigma, the criminalization and the fact to be still infectious for others is still a reality. In my opinion poor efforts are made to find a cure and even the current promising research will not release anything useful for at least 10 years. Clinical trials take years to be completed and without any certainty of success. It's not to sound pessimistic or hopeless but I think we are far away from something very potent against this disease. The procedures and tests a drug must pass before it reaches the patient requires too much time. The problem I think is that this disease is no more considered as an emergency. HAART has put the epidemic in a different perspective and so the efforts to find the definitive cure.

[mecch]

Yes.
And no.
You make a lot of sweeping generalisations.

I'll cite one example:

"But since 1996 when HAART became available nothing more potent in terms of treatment came out and we are still waiting for it."

Not true! 1996 HAART was pretty crappy, but effective.  1986 - there was basically nothing. 2006 - Atripla, pretty decent stuff, all things considered.

I think stigma has lessoned recently, at least in Europe. At least in the gay and gay-friendly world.

In the past year or two, many HIV VIP's have announced a renewed commitment for cure, not life-long treatment.

A few years ago, millions of people had no access to treatment, a situation rapidly changing in developing countries.

I benefit today from Intelence which was pushed through the pipeline pretty fast.

I agree - the disease is not an emergency - IF TREATMENT is available in a country. If it is not, its very much considered an emergency.  Who says it isn't? 

[xman]

You're right about treatment improvement. But the giant step from AZT to HAART wasn't repeated yet. When I talk about something new I mean a revolutionary treatment that would change the entire aspect of the disease. This happened in 1996. We are now waiting for the next. There's a lot of needless burocrazy around the research which delays the possibility to benefit from new drugs in the pipeline.

Also why we still haven't a drug that eliminates HIV in sperm. This would stop 90% of sexual infections, the stigma and criminalization we suffer everyday and would permit positive people to conceive naturally without the fear to infect or re-infect the partner. HAART is able to decrease the amount of virus but it doesn't eliminate the risk of transmission.

[sensual1973]

i personally believe that a better treatement or a cure is there already,but those who have it would want to gain from Hiv (financially) as long as possible before they go to the next treatement options.
just my personal belief.

[freewillie99]

i personally believe that a better treatement or a cure is there already,but those who have it would want to gain from Hiv (financially) as long as possible before they go to the next treatement options.

And I believe that 9/11 was an inside job, Neil Armstrong never left a movie studio, and aliens have infiltrated the government.

[Miss Philicia]

xman, as someone that isn't infected yet with HIV if you read the rules in the "Am I Infected" forum you're not supposed to be posting here.  Thanks.

[xman]

xman, as someone that isn't infected yet with HIV if you read the rules in the "Am I Infected" forum you're not supposed to be posting here.  Thanks.

I'm infected since october 2008. Anything to add?

[Miss Philicia]

I'm infected since october 2008. Anything to add?

Yeah sure.  How's that infection working out for you?

[xman]

Not on meds and healthy. VL 64000, CD4 696 24%.

[Miss Philicia]

Not on meds and healthy. VL 64000, CD4 696 24%.

Good to hear.

As far as this thread subject goes, please keep in mind that post-HAART there were many of us that had built up multiple resistance issues due to mono/dual therapy through no fault of our own, so the focus for much development was on new AVR's for people with such issues (Fuzeon, Prezista, Isentress, Intelence, etc.)  Personally, as I fall in that category, I'm more than happy that they didn't shove the money into "cures" like you're advocating.  Selfish of me?  You bet -- otherwise I'd be dead as it took 13 years of treatment for me to get my viral load to undetectable.

[xman]

Of course the drugs available are indeed excellent. The problem is that in the long term a therapy that requires full adherence for the entire life is unsubstainable from a biological and financial point. If every person would be treat with modern drugs (desirable but impossible) the costs to warrant a lifetime access would be enormous. Try to calculate HAART therapy for 30 milion people worldwide for a time period of at least 40 years. To make it worse, every day there are new infections with an increase in costs. Even with adeguate prevention programs the disease will never stop to spread. Pharma Companies don't care very much about the costs since they have to make profits on them but the governments have more and more difficulties to fund the therapies. Cheap drugs like Combivir are dangerous since they have serious side effects and it's in my opinion ethically and morally inacceptable to give them to the developing countries instead of the new and safer meds. A cure is desperately needed. Remember also that even with undetectable HIV levels in our blood we don't know what damage could make the virus itself and the drugs you're taking in the longterm.

[mecch]

Well, that post was more reasonable and interesting than the one that you started this thread with.

Exploring the politics and economics of an epidemic and its treatment - including all the stakeholders.

Pick one issue and submit it to discussion.

Everyone wants a cure for this and every other g.d. disease for that matter.  The evil big pharma vested interest in "no cure = high profits from lifetime treatment" is compelling - except consider that a lot of research goes on in university and national research institutes and there each research team would have great motivation - professional prestige and profit and contribution to science and humanity -- to finding a cure for any disease.

If the topic is "we don't know the longterm consequences of life-time HIV infection in reservoirs"  or "we dont know the longterm consequences of HAART" - well - duh, obviously we don't.

Just too many topics in your post so can we narrow it down to one, and discuss, please.

[Miss Philicia]

Combivir isn't dangerous, but feel free to prove me wrong.  Otherwise your train of thought in this thread is fairly typical for someone newly diagnosed.  Contextually speaking, developments in the past decade aren't very shoddy.

Otherwise your argument more or less says: treatment for 30 million = too expensive so let's shaft them and just focus on a cure.  That's not the most pragmatic view.

[Assurbanipal]

Of course the drugs available are indeed excellent. The problem is that in the long term a therapy that requires full adherence for the entire life is unsubstainable from a biological and financial point. If every person would be treat with modern drugs (desirable but impossible) the costs to warrant a lifetime access would be enormous. Try to calculate HAART therapy for 30 milion people worldwide for a time period of at least 40 years. To make it worse, every day there are new infections with an increase in costs. Even with adeguate prevention programs the disease will never stop to spread. Pharma Companies don't care very much about the costs since they have to make profits on them but the governments have more and more difficulties to fund the therapies. Cheap drugs like Combivir are dangerous since they have serious side effects and it's in my opinion ethically and morally inacceptable to give them to the developing countries instead of the new and safer meds. A cure is desperately needed. Remember also that even with undetectable HIV levels in our blood we don't know what damage could make the virus itself and the drugs you're taking in the longterm.

Patents expire, you know.

[freewillie99]

This thread rivals the Yong Kang or silver colloidal discussion.

[xman]

Well, that post was more reasonable and interesting than the one that you started this thread with.

Exploring the politics and economics of an epidemic and its treatment - including all the stakeholders.

Pick one issue and submit it to discussion.

Everyone wants a cure for this and every other g.d. disease for that matter.  The evil big pharma vested interest in "no cure = high profits from lifetime treatment" is compelling - except consider that a lot of research goes on in university and national research institutes and there each research team would have great motivation - professional prestige and profit and contribution to science and humanity -- to finding a cure for any disease.

If the topic is "we don't know the longterm consequences of life-time HIV infection in reservoirs"  or "we dont know the longterm consequences of HAART" - well - duh, obviously we don't.

Just too many topics in your post so can we narrow it down to one, and discuss, please.

Well economy is the main reason for the lack of a vaccine or cure. What would happen to all the drugs that are waiting for FDA approval and for which the companies invested millions of dollars if a cure would come out now? It's a simple logic.

[Miss Philicia]

logic or conspiracy theorizing?

ps: we've all heard this lame argument before and it never holds water

[mecch]

I dont believe that argument.  

1) There is no vaccine because scientists havent developed one that works. Also its difficult to test on humans.

2) There is no cure because scientists haven't discovered one.  You ignore the fact that science and tech developments take place all the time, destroying the profits of older stuff.  Also, within HIV, the medical treatment that gives a so-called "cure" may NOT be developed by a pharma company, so tough shit for them. Or, more likely, the "cure" will be a treatment that requires some sort of intermittent vaccine boosters. Not a one-pill wash away the pain kind of thing.  

IF you really want to argue the conspiracy theory on economy and big pharma - prove it, and disprove the counter arguments.

I highly doubt the international world of scientists is so capitalistic and mean-spirited.  Maybe some of the pharma companies that some of these scientists work for, but not the scientists themselves.

I think you are someone making HIV into a stigma - a virus with morals - that would then support the idea that some big cabal of international profiteers is trying to make a buck off the HIV+, because who gives a shit about them.  

Its just a virus, mortal, and difficult to figure out how to "beat".  

[xman]

I really hope you're right. Conspiracy theories don't interests me and I don't believe in them a lot, but the fact that there's a big interest in drugs is not science fiction but a reality.
What makes me angry is the slow advance to find something that would put an end to this. I'm newly infected and I have a whole life ahead and I don't want to live the rest of my life taking medicines all the day. I guess this is the opinion of all here. Remember that those who are looking for the cure aren't infected like us and they don't have the emotional, psychological need to find something. They look after prestige and Nobel prizes. I'm probably wrong but that's my point of view.

[mecch]

Yes thats cool. Nobody here wants to take drugs forever.  The slow advance is relative. Its hard to appreciate from our shoes but just a year ago, when I was negative, I remember reading an article were some huge scientists were saying HIV research is VERY HIGH LEVEL, amazing achievement in the history of medicine. See?

Also you should remember that the antiretrovirals were NOT produced with the idea - ah ha, let's get a quasi treatment that wont cure - in fact the reverse, so we can profit from the sick. When they were combined into TRITHERAPY, scientists were predicting a possible cure.

Your point about scientists mainly being HIV- is probably true but so what. You attach a judgement to that -
The idea of the mad scientist crazily working to cure his own sickness, or his true love's, before she dies, is cinematic and melodramatic.

I have taught in premier science Universities and scientists are cerebral types mostly motivated by theory, hypothesis, scientific method, and research.  

I'll grant you that a country or consortium could have a sort of Manhattan Project for a cure, which might really create synergies and -- as you seem to want, also personal motivation among the scientists (which I doubt is lacking, rather it is intellectual).  Certainly that would have been better than trillions (?) dumped in Iraq and Afghanistan. What a waste.

As it is, would you agree that a government has limited resources? If Obama can scrape together the money and the votes, he'll overall the health system for every American.  

Anyone would have a hard time convincing governments to put billions or trillions, right now, into HIV research.  

Is that your point? I agree!

But choices have to made.  These are very practical based on history - science and the HIV epidemic history has delivered us to a point were the disease is highly manageable with HAART.  But yeah, HAART has to a certain extent, and will for the present and future, soak up an emormous percentage of expenditures any govt is willing to throw at HIV.  

As other people explained, there is no going back. I'm damn happy the drug on the market in 2008 is the one I finally needed!  Imagine that.  Working and doing fine.  

History and science did NOT deliver a cure at the right moment.  We're stuck with what we are stuck with - figuring out the best way forward.
 

[xman]

The problem is also that I'm hetero and the stigma around this disease is still to big to deal with. Maybe in the gay community there's some hope of improvement concering this issue but I'm pessimistic about the general population. Everyone says HIV is now like diabetis. That's bullshit. No one will put in jail while having diabetis and making sex with others. But with HIV you can even been prosecuted if the condom broke and you infected your partner. How do you prove that the condom broke? Why there's no criminalization for hepatitis or HPV which leads to cancer? The explanation is that you can criminalize a minority but not the entire population. Since both diseases are much more frequent in the general population you can't make restrictions like for HIV infected. For 25 years we are now forced to use condoms. I'm tired. At least there could be something to eliminate HIV from semen and other fluids. The research never tried this approach. They found HAART and they are happy with that. How long this magic pills will work nobody knows and considering the current efforts it seems not to so important. Maybe if 500 million people are infected the interest to find the cure would increase. I guess it's all a matter of numbers.

[mecch]

In Washington DC the HIV epidemic is hardly a homo thing. Nor is it gay in many countries.
The stigma you speak about in the hetero world is no doubt true!

Your comments about condoms apply equally to gays, bis, heteros, however. We all gotta wear them.  If you just turned positive a year ago (?) then I doubt you spent 25 years "forced to use condoms" because unprotected sex in committed couples is rather common in both the gay world and hetero world, right?

Now you know you are HIV+ and your life changes and its sucks in some ways, so deal with that.
 
The social stigma has lessoned maybe in the gay world, thats what I meant. The sexual stigma is more or less intact -- lots of refusal for even safe sex, if you disclose. Dont see that its any different from what you heteros experience.

Criminalisation specifically of HIV is a good point.  Thats a different topic than cure, I think.

Haart does reduce HIV in sperm, by the way, but not eliminate it always, as you say.

"They found HAART and they are happy with that."
You are implying no further research is being done, and you are wrong about that.

[xman]

If you just turned positive a year ago (?) then I doubt you spent 25 years "forced to use condoms" because unprotected sex in committed couples is rather common in both the gay world and hetero world, right?

Now you know you are HIV+ and your life changes and its sucks in some ways, so deal with that.
 
"They found HAART and they are happy with that."
You are implying no further research is being done, and you are wrong about that.

You're right. I refused to use condoms and I paid the bill. I'm dealing with it but I still don't know how the world is dealing with this and with the fact there will be nothing to stop the spread. Prevention program have proven to be inadeguate since HIV is still a reality and new infections occurs every day.

I know more research is being done but it's too slow. As I said trials need years for being completed but you'll not get younger as time passes and you can only hope to live long enough to see and enjoy the results if effective.

[mecch]

You are a little bit of a "debbie-downer" but its understandable if you have a recent diagnosis.

Effective HIV treatment is considered a contribution to decreasing infection rates, actually.  But its complicated.

Also in the gay community - sero-sorting. 

Anyway good luck to you!

[xman]

You are a little bit of a "debbie-downer" but its understandable if you have a recent diagnosis.

It's possible that my relative recent diagnosis is influencing my perception of the disease and the reality around it. Longer infected persons probably accepted their condition in the hope that something will change but I see here in this forum everyday the need of reassurance about the progress in science. I understand those like veritas in following a possible cure and I see his efforts in informing us about the new discoveries concerning anti-ps and the promising drug bavituximab. His constant work is a clear sign that he and we need a solution to the problem.

[xman]

Combivir isn't dangerous, but feel free to prove me wrong.

Combivir with Viread is associated with lipoatrophy. We still don't know exactly what is the cause but we know it is not reversible. The only solution is plastic surgery. Why condemning people in developing countries to this challenging condition knowing that they will never afford any surgery to solve their appearance problem once they occur. We have new and better drugs. Everyone should be able to benefit from them, even in the Third World.

[Miss Philicia]

Combivir with Viread is associated with lipoatrophy. We still don't know exactly what is the cause but we know it is not reversible. The only solution is plastic surgery. Why condemning people in developing countries to this challenging condition knowing that they will never afford any surgery to solve their appearance problem once they occur. We have new and better drugs. Everyone should be able to benefit from them, even in the Third World.

Combivir doesn't contain Viread, it contains AZT and Epivir.  Truvada contains Viread, and is the NRTI class med with the least chance of contributing to lipoatrophy.  But whatever, yes lipo sucks (I should know as I've had it for a decade) but I wouldn't use the word "dangerous" which is what you did.  But still, Combivir isn't the primary offensive medication that you're trying to describe, that really would be more something like Zerit which isn't given out much anymore, but is the reason you see lipo in HIV patients, but those are patients that took this medication over a decade ago.

You need to try and relax a bit.

[betonet]

I 100% agree with XMAN's topic!
I absolutely think too that there are not enough efforts to find a cure.
Stem cells research will be the cure, I think. But will see.
Things go very very very slowly in finding a cure.
The truth is - there are too many interests involced in AIDS bussiness. And not only pharma companies.

So, we, the ordinary people will just sit and wait some day the miracle to happen - the cure to come out.
.

[xman]

The problem is that there are a lot of scientific discoveries and a lot research is done but we have nothing that is ready for use even on the distant horizont. I guess we have to wait 10-15 years for something revolutionary to come out.

[sensual1973]

when i was first diagnosed in year 2001 i heard that in 10 years a major breakthrough would happen,but almost 9 years now,and nothing!,only a few new medications came out,and the 10 years have been renewed.I am absolutely convinced that it is a bureaucracy. And as usual,you will hear the boring broken record : "its a mutating virus,and still many things to be discovered about its nature" like the virus was discovered 5 years ago !!!

[freewillie99]

when i was first diagnosed in year 2001 i heard that in 10 years a major breakthrough would happen

What are you complaining about?  You have two years to go!

You guys seriously need to chill.

[Surfnsun01]

when i was first diagnosed in year 2001 i heard that in 10 years a major breakthrough would happen,but almost 9 years now,and nothing!,only a few new medications came out,and the 10 years have been renewed.I am absolutely convinced that it is a bureaucracy. And as usual,you will hear the boring broken record : "its a mutating virus,and still many things to be discovered about its nature" like the virus was discovered 5 years ago !!!

I know it can be frustrating... this has been one of the most complex and devestating viruses of all time... a code not cracked by even the brightest of minds... frustration goes with the territory... but the research is improving and has come a LONG ways in a fight that takes baby steps... I for one am thankful I live now with such great medications and new hope for the future... thank you to all the scientists out there working so diligently to pave a brighter tomorrow... my path will continue strong with or without this wicked virus attached to me... we must do our part to help those in more dire situations... trust.

[sensual1973]

What are you complaining about?  You have two years to go!

You guys seriously need to chill.

rejection,meds side effects,stress,anxiety,depression,addiction,suicidal thoughts.....,etc.

fun isnt it freewillie99 ?

[freewillie99]

rejection,meds side effects,stress,anxiety,depression,addiction,suicidal thoughts.....,etc.

fun isnt it freewillie99 ?

sensual,

You and your brother in misery, xman, need a good Psychiatrist to air your grievances.  Life is what you make of it and frankly, your bellyaching, gloom and doom tirades, and lame conspiracy theories do nothing but drag others down to your level.  It's not that I lack empathy, it's just that at some point enough of your pointless pessimism is enough.  Give it a rest.

[Miss Philicia]

rejection,meds side effects,stress,anxiety,depression,addiction,suicidal thoughts.....,etc.

fun isnt it freewillie99 ?

I trust you're seeing a therapist regularly?  If not, why not?

edit: checking your old posts I see you've had an addiction issue that predates your HIV diagnosis, combined with underlying social issues due to the region/culture you were born in, etc.  I'm happy that you've been successful at getting off benzo addiction.  Anyway, those seem like the larger issues rather than HIV itself, though of course all of us would prefer to be HIV negative.  Yeah, HIV can suck no doubt, but frankly there are many, many other diseases that suck a hell of a lot more.  From your other posts, it seems you frequently are inventing problems/fears with little basis in your own reality, mostly from reading about side effects and too many studies.  For someone with an acute anxiety diagnosis that even predates your HIV infection, it's probably not the greatest idea to read that stuff.  You need to realize that the majority of the worst side effects issues one reads about are from long term survivors who were on totally different first generation HIV medications in the 90's, and have vestigial issues from these meds what aren't largely prescribed currently.   It's all fun and good to worry endlessly about getting grade four lipo in your face, but if you don't even have it why worry yourself into a massive panic attack?

As far as sex/rejection --  honey, you live in London.  That's like having HIV in NYC... you really can't be complaining about the lack of partners, can you?  Even with HIV it's like a candy store if it's what you want.  I lived in NYC with HIV for 11 years, and dated someone in London for many years so yeah I know what I'm talking about.  I guess what I'm trying to tell you is that your situation really isn't as bad as you've made it out to be, not by a long, long shot.

[Ann]

Life is what you make of it and frankly, your bellyaching, gloom and doom tirades, and lame conspiracy theories do nothing but drag others down to your level.

One can only be dragged to a lower level if one allows oneself to be dragged. I'm not sure what's worse, moaning people or people who moan about moaning people.

Ann

[Miss Philicia]

One can only be dragged to a lower level if one allows oneself to be dragged. I'm not sure what's worse, moaning people or people who moan about moaning people.

Ann

You're moaning, Ann.

[John2038]

About the research fighting HIV, I am happy with:

- the numerous studies made on the existing drugs (mutations, side effects, formulation, dosing, etc): we might have the same drugs for years, but at least we are using them better

- the treatment are diversifying (finally)

- some on-going research (non exhaustive list) are very interesting:

zinc finger,
HDAC,
therapie genique,
dermavir patch,
IgA,
Tre Recombinase,
Bavituximab (anti-ps),
bavarian nordic,
geovax,
RNA silencing,
APOBEC3G,
european vaccine initiative,
pro 140
etc


- the life expectancy is continuously increasing (even if we compare 2005 and 1996)

- some OI/non-OIs can be better treated and or depisted earier


As our life expectancy is increasing, we are having also more and more time to wait for the next treatment. I believe that the vast majority of the newly infected patient will have a good chance to see the cure (could it be functional), as most of the others.

just 2 cents

[freewillie99]

One can only be dragged to a lower level if one allows oneself to be dragged. I'm not sure what's worse, moaning people or people who moan about moaning people.

Ann

Thanks for the insight, Ann.  Never really figured you as a moaner though.

[sensual1973]

Am not dragging anyone here unless they want to be dragged.I refuse to get involved in an endless argument that goes no where.Dont shoot back at me coz i have a different point of view,its my right to think the way i want to!.
thanks all for the feedback.