POZ Community Forums
Meds, Mind, Body & Benefits => Research News & Studies => Topic started by: sensual1973 on March 21, 2013, 10:29:21 pm
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Since my diagnosis in 2001 i have been checking this site out,and ever since all i hear is : "but scientists warn that it will take many years before we see a cure..etc.",or "it will take another 10 years for so and so ...".How do people here feel about all this?,what's with the research and the new discoveries,and findings that make headline news here or in the media then fade away and we never hear about them again?.Any feedback is appreciated,Thanks.
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Trust me, that's been going on since I was diagnosed too which is twice as long as you.
... just 10 more years folks!
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I try to consentrate on living life to the fullest with HIV . I have been poz 30 years so looking for a cure story has lost its shine for me . I have a feeling the news media will drop me a clue if a cure or something notable comes around and I can do the happy dance with the best of them then .
I am interested in living and sharing information about living a full meaningful life despite HIV . Since I have HIV and I dont have a cure I make the best of what I have .
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When the US Secretary of Health announced that scientists had discovered the virus that causes AIDS she said a vaccine would be ready in two years.
Thirty years later..................
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Word of advice to you younger members . You only get one time to be young and have your days in the sun so I would try hard and do the work to except the things in life you can not change . Go climb a mountain or do a zip line or maybe volunteer somewhere but don't spend your young life wanting something you haven't got , it only takes you away from the joys in life when you chase your sorrows .
I haven't given up on a cure but a cure isn't something I can make or control and I can make a better day for my friends and myself too .
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Hey Sensual;
I agree with the vast majority of responses so far here - things are going to take some time, and we need to focus on truly living life today.
That said, we are in a very different time today than we were ten years ago. The advancements in technology - from nano-medicine to the humanized mouse to stem cell advancements are the stuff of science fiction just a few years ago. From a scientific or medical technology perspective, I don't believe that the last ten years are a good prediction of the next ten years.
Sadly, even with the scientific advancements I believe it will take 5 - 10 years for a major breakthrough because of limited funding and our protracted process of medical trials. The science is evolving faster than our societal abilities to convert it to clinical benefits.
I think this is supported by the March 6th, 2013 Treatment Action Group report
Funding Scientific Innovation: Global Investments in HIV Treatment Research and Development in 2010 and 2011, which can be found here:
www.treatmentactiongroup.org/hiv
This situation raises an interesting question in my mind - which is where are the best leverage points for HIV advocacy? My personal perspective is that there is a strong humanitarian and financial case to be made to speeding up the development of a cure.
Ok, now off to climb a mountain or do a zip line....
JM
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of course am not waiting for the cure to come next year,but i only wanted to hear the feedback.I do also believe what Jeff G had said is very true,a day at a time and do what we are supposed to do to benefit from this life,if the cure comes then happens all the best,and if it does'nt then my meds are really doing well so far.Best to all.
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I been positive since 01/18/13. I have done a lot of reading and such. From what I can tell most are not doing research on finding a cure. Most are working medication to prevent infection and treat infection. I have read about one company that has changed their focus on these two above item and are now working and researching on medication to root out the virus from where it hides in the body.
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I read in the supermarket checkout line that them Frogs cured a dozen people of the AIDS so I guess it happened already and as usual the cure is just for rich and fancy people and famous people like Michael Jordan. They just want the AIDS suckers to keep paying. It's all a racket I tell you.
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I am interested in living and sharing information about living a full meaningful life despite HIV . Since I have HIV and I dont have a cure I make the best of what I have .
Jeff, I'm down on bended knee. Will you marry me? (I get to be "the man". Deal with it!) ;D
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Jeff, I'm down on bended knee. Will you marry me? (I get to be "the man". Deal with it!) ;D
For Shimpees ... I except , but I am DA man and you will have to deal with a few sister wives . It will be like our little cult except for any kind of organization or poisen koolaid .
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I read in the supermarket checkout line that them Frogs cured a dozen people of the AIDS so I guess it happened already and as usual the cure is just for rich and fancy people and famous people like Michael Jordan. They just want the AIDS suckers to keep paying. It's all a racket I tell you.
Who knew? Michael Jordan has da AIDS.
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For Shimpees ... I except , but I am DA man and you will have to deal with a few sister wives . It will be like our little cult except for any kind of organization or poisen koolaid .
As long as I get my designated nights with the sister wives too (you can't have all the fun), I'm very happy with that arrangement. Shall we set a date?
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Who knew? Michael Jordan has da AIDS.
I kind hate to say it but I think mecch is trying to say all Aids patients look alike . His fatal flaw being MJ doesn't have DA aids or if he does he ain't bragging all over town like Magic .
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As for the recent cure buzz that's been going through the media, I think this article (http://www.theatlantic.com/health/archive/2013/03/hiv-cures-where-we-are-realistically/274164/) puts things in a good perspective.
I often wonder why many (not referring to anyone in this thread, just speaking generally) seem to have such difficulties to grasp how research is conducted. It's not like those scientists could plan future breakthrough discoveries ahead of time and they are just being mean to keep us in the dark about when they will finally cure AIDS. There is no road map for upcoming discoveries.
If scientists make predictions about how long it's going to take, it's just an educated guess, not more not less. They have a good idea about where we stand right now and what pieces of the puzzle are missing. And then you add the years it takes to do the clinical trials, get it approved etc.
I think it's unfair to compare the predictions some scientists made in the 80s ('A vaccine is just a few years away') with predictions that are being made now. In the 80s they had not the slightest idea of what they were dealing with. Life sciences have made incredible progress since then and there are some 200000+ publications (http://www.ncbi.nlm.nih.gov/pubmed?term=HIV%5BTitle%2FAbstract%5D) on HIV today.
Here's a cumulative plot (http://imgur.com/XW2CuIN) of the HIV-related publications over the years.
There is quite a bit of cure-related research going on. Several groups work on therapeutic vaccines which may lead to a functional cure one day (depending on your definition) and there is plenty of research into the latent cells.
Anyway, all we can do is wait. I'm optimistic but I'm not going to hold my breath.
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At my age, I just try and live everyday like it's my last, I wasn't even suppose to be alive past the early 90's
I'm just trying to make the best out of whatever my life w/ AIDS
throws at me,
and I must say thur the yrs. I've been throw a lotta
curve balls ( so to speak)
To be honest here & frank, I don't even think about AIDS like I use to
I've had it way too long to continue to dwell on it
I just throw my 2 pills a day down my gullet and still hope the best ;)
HUGS
DEN :D
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I kind hate to say it but I think mecch is trying to say all Aids patients look alike . His fatal flaw being MJ doesn't have DA aids or if he does he ain't bragging all over town like Magic .
Really? I just think she got her Aids infected former NBA stars mixed up. Easy to do because Magic was never in the news.
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Just trying to speak in "dumb tongues". I mean we all compound everything so why not basketball legends and HIV and AIDS and what is a cure and what is a functional cure and who gets what anyway in this capitalistic world. I remember when dying Rock Hudson flew over to Paris people believed he might get a fancy french AIDS CURE. 8)
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Considering that we didn't even have a test for this virus in the beginning, I'd say we've come pretty far. To be given a "death sentence" because there were NO treatments and now to have many treatment options says a lot!
If you ask a lot of us old farts, you'd probably hear that attitudes towards this virus played a pivotal role in surviving. I watched too many succumb to the virus mentally before physical issues arrived.
I was determined to survive in spite of being told that I could possibly live to be 30. And between the different AIDsy periods, I experienced as much life as possible. I learned long ago to not drive myself crazy worrying about the future of this virus and deal with the here and now.
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what is a cure and what is a functional cure and who gets what anyway in this capitalistic world.
The giant leap forward in research by China and North Korea is stunning.
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The giant leap forward in research by China and North Korea is stunning.
I'm not quite sure if you're being facetious or not (because I'm not a cure-hound). If you're not, do you have any links regarding hiv research going on in either place (preferably NK)?
I'm pretty sure they're doing some in China, but N. Korea? Hmmm....
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North Korea officially claims that HIV has not reached their country, so why would they bother investing money in a cure when it could be better used in uranium production?
ps: Kim Jong Un is a flame-baiting troll.
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I'm not quite sure if you're being facetious or not (because I'm not a cure-hound). If you're not, do you have any links regarding hiv research going on in either place (preferably NK)?
I'm pretty sure they're doing some in China, but N. Korea? Hmmm....
Put down your bottle dear and read what I was quoting.
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North Korea officially claims that HIV has not reached their country, so why would they bother investing money in a cure when it could be better used in uranium production?
ps: Kim Jong Un is a flame-baiting troll.
Jeeze Ms. P, did you read what I was quoting?
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Jeeze Ms. P, did you read what I was quoting?
No, I limited myself to only reading Ann's quote of yours because this would better assist me in causing thread drift.
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No, I limited myself to only reading Ann's quote of yours because this would better assist me in causing thread drift.
mission accomplished ;)
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North Korea officially claims that HIV has not reached their country, so why would they bother investing money in a cure when it could be better used in uranium production?
ps: Kim Jong Un is a flame-baiting troll.
Agreed. On all counts.
However, you can bet there's hiv research going on in China - they're all about science and technology these days.
That's why I wasn't sure if Aunt Doxie was being facetious or not.
~sigh~ People have been posting while I'm trying to post and simultaneously let cats in from the terrible snow-storm we're experiencing at the moment.
Put down your bottle dear and read what I was quoting.
If by "bottle" you mean "cup of coffee", I always put it down before I type because I type with two hands. I don't drink alcohol in the house.
I did read what you were quoting. I still wasn't sure if you were being facetious or not. It can be difficult to tell with you sometimes.
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Sorry, I'll dumb-it-down next time. :P
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Sorry, I'll dumb-it-down next time. :P
Maybe just stay out of a thread next time if all you have to offer are facetious one-liners.
Can we get back on topic now?
Thank you.
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Maybe just stay out of a thread next time if all you have to offer are facetious one-liners.
Can we get back on topic now?
Thank you.
My, prickly aren't we? The thread had veered long before I got to it. Happens all the time and sometimes with your participation. Your proposal to Jeff comes to mind.
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My, prickly aren't we? The thread had veered long before I got to it. Happens all the time and sometimes with your participation. Your proposal to Jeff comes to mind.
The thread veered off, admittedly, then got back on track again. I was trying to re-rail it again.
I was honestly flummoxed whether you were being facetious or not with your comment about China and NK. It can be difficult to tell with you sometimes.
As you obviously do not have any links to share about hiv research in China and/or NK, can we please move on now and let the discussion get back on track? This isn't OT.
Thanks.
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Okay, let me explain. I was facetiously responding to mecch's post where he said something about capitalism controlling a "cure." Since capitalist countries have led and still lead in AIDS research I posted what was an obvious tongue in cheek reference to the stunning research being done in China and North Korea. So you see, it actually was kinda-sorta on topic. I freely admit that I have no inside information regarding North Korea and AIDS research. If I had to guess I would say it didn't exist. Or a cure for AIDS for that matter. You may now return to your regularly scheduled programming.
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Okay, let me explain. I was facetiously responding to mecch's post where he said something about capitalism controlling a "cure." Since capitalist countries have led and still lead in AIDS research I posted what was an obvious tongue in cheek reference to the stunning research being done in China and North Korea. So you see, it actually was kinda-sorta on topic. I freely admit that I have no inside information regarding North Korea and AIDS research. If I had to guess I would say it didn't exist. Or a cure for AIDS for that matter. You may now return to your regularly scheduled programming.
Geez. I was speaking in tongues and Dachshund was being sarcastic. :o Sorry this was hard to follow by others, or better yet so poorly executed by moi.
Silly word play aside. The topic. Yeah we've gone far, and aways to go before the cure. To the OP - nobody has a crystal ball... Whats your opinion?
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let's say that a cure is discovered tomorrow (just for arguments sake), what concerns me is who would have access to it?
let's just say it's gene therapy cure. the treatment could very easily cost in the hundreds of thousands of dollars. considering arvs have turned hiv into a "chronically manageable" disease which is unlikely to be transmitted with proper treatment, what's the incentive to pay for a cure?
Insurance, Medicare, VA, Medicaid, NHS, and other nationalized health care may opt for the less expensive option of treatment versus paying for a cure.
what about the majority of the world that's having a hard time affording arvs? Africa, India, Central and South America would not be able to cover the cost. You could very well end up with a class divide of those cured and those not. Just a thought.
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I don't spend much time thinking about a cure. It would be nice, definitely, but we're still far off from that day.
In the meantime, I think about how humane it would be for everyone in the world who lives with hiv to have affordable, sustainable access to healthcare and the treatments we already have.
I think about it, but I have no answers. I wish I did.
I don't know if anyone has an answer as to how one persuades governments and others in power to understand that health care should be a human right, not a blessing to be wished for* - nor a commodity to be bought.
*a nod to Kofi Annan
As for China, there is no doubt in my mind that they are doing plenty of hiv research, we're just not hearing about it. I doubt their citizens know about it either. China has one of the fastest growing economies in the world and they're all about technology. Hiv research is a type of technology, one that could net them billions. You bet they're researching hiv.
North Korea? Are pigs flying yet?
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what about the majority of the world that's having a hard time affording arvs? Africa, India, Central and South America would not be able to cover the cost. You could very well end up with a class divide of those cured and those not. Just a thought.
I think you hit the point right on target , there already is a class divide when it comes to healthcare . I cant find a link but I did read something once that discussed the expense of ARV 's and the cost involved to treat HIV . It only takes about 8 years to rack up comparable medical bills to that of a stem cell procedure .
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I read in the supermarket checkout line that them Frogs cured a dozen people of the AIDS so I guess it happened already and as usual the cure is just for rich and fancy people and famous people like Michael Jordan. They just want the AIDS suckers to keep paying. It's all a racket I tell you.
HIV positive for 28 years and not focusing on a cure. Of course, it would nice but I am not putting my pinch money on the table for a near horizon cure. Just living my life each day the best I can.
By the way, those people talking about frog AIDS cures were hallucinating since that can happen when you go out frog licking: http://www.thenakedscientists.com/HTML/features/article/tripping-over-psychoactive-toads/
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If I see a "cure" article on the homepage, I will read it. But, I don't actively seek it out.
I am more interested in the articles about research into boosting the immune system to fight HIV better, along side ARV's. Or, possible therapies where you'd take meds once a week or month. The cure articles can be educational. I mean, if you are still learning how the immune system works and how viruses attack it, then some of those articles can teach you what different biological processes are and how they work.
I find it amazing how much has been learned, in a fairly short time. HAART introduced in 1996 seems nothing but amazing to me. I would have thought it would have taken much longer. To find out how far we've come, I think reading the threads/articles in this forum will give a history of all the studies and possible achievements. If there is a study, it is probably posted here and broken down by smart folks here, so that even I can understand it.
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in my opinion the major hurdle is adequate funding in hiv cure research. more money is spent in vaccine research which in 3 decades wasn't able to provide any meaningful results. the thai vaccine provided a 30% protection but the result is controversial and brought more questions than answers.
we wasted several years in cure research. one cause was the decision to stop the stem cell research by the bush administration in 2001.
but we have the power to contribute in accelerating the path toward a cure. we can support organizations like the aids policy project or amfar which are pressing to increase the funds.
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From China Daily :
The second phase of a human trial for China’s potential HIV vaccine started on Tuesday in Beijing.
About 150 volunteers, mostly those with a high risk of contracting HIV, including gay people, took part in the clinical trial.
Shao Yiming, director of the virology and immunology department of the National Center for AIDS/STD Control and Prevention, said at a news conference that the trial will last nearly two years in the Beijing You’an Hospital of the Capital Medical University.
"The phase 2 clinical trial mainly aims to test the vaccine’s safety and is crucial for the introduction of the next phase, which will test its effectiveness," Shao told China Daily.
"The vaccine candidate is promising, as the phase 1 trial conducted among 46 volunteers found that it could induce immune responses to HIV among some recipients," said Shao, one of the founders of the China AIDS Vaccine Initiative.
Results of the latest trials are expected to be released in two years, said Zhang Chong, a doctor with Beijing You’an Hospital.
By 2011, China had 780,000 people living with HIV/AIDS on the mainland, government estimates showed.
Shao also urged the government to keep investing in the research of an HIV vaccine.
A UNAIDS report said that China invested at least $18 million in HIV vaccine research and development in 2010, making it the third-largest spender in the world after the United States and the European Union.
China currently has three major HIV vaccine candidates under development on the mainland, all financed by the government,[/b] Shao said.
"China still needs more, as many developed countries like the US usually have more than 10 to have a better chance of success," he said.
http://www.chinadaily.com.cn/china/2012-08/15/content_15676301.htm
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Good for the Chinese. Maybe they'll be the geniuses or lucky capitalists to make a breakthrough.
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Considering the Chinese can't seem to make children's toys without lead in them and dog treats that dont kill thousands of pets I'd be a bit skeptical at any Chinese Vaccine.
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Here's (http://news.sky.com/story/1472/cuba-to-test-hiv-vaccine-on-humans-this-year) a Cuban trial for an HIV vaccine.
Personally, I'm a bit skeptic about research from China. I think they lack the long established research facilities and culture that other countries have. But maybe they will catch up some time.
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http://archive.sciencewatch.com/dr/cou/2012/12janALLgraphs/
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http://archive.sciencewatch.com/dr/cou/2012/12janALLgraphs/
Good find, makes sense, Asia Pacific is where the action is , considering most countries in that region have a annual growth rate of around 8 % year on year. whereas the west is struggling to achieve even 1% ( UK -.5% this year USA less than 1% )
Lets hope they keep increasing funding on research.
Here's (http://news.sky.com/story/1472/cuba-to-test-hiv-vaccine-on-humans-this-year) a Cuban trial for an HIV vaccine.
Personally, I'm a bit skeptic about research from China. I think they lack the long established research facilities and culture that other countries have. But maybe they will catch up some time.
3000 year old Chinese civilisation lacks culture ? ;D
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Good find, makes sense, Asia Pacific is where the action is , considering most countries in that region have a annual growth rate of around 8 % year on year. whereas the west is struggling to achieve even 1% ( UK -.5% this year USA less than 1% )
Actually the latest projections for the US are +2.3% to +2.8% in 2013 (Federal Reserve).
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I guess my statement was unclear. I didn't mean culture in general, of course. I was talking about long established research facilities and a certain research culture. My point is that, no matter how much money you invest, you can't build a second Harvard or Oxford in a vacuum and expect it to produce great discoveries by tomorrow.
http://archive.sciencewatch.com/dr/cou/2012/12janALLgraphs/
Interesting. That suggests they are indeed catching up. (Although I don't think that the number of citations alone is a great indicator)
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Yes that's citations across 22 fields, not just medical research.
I'm wouldn't be surprised if some major breakthrough comes through anywhere, and even in some rather low investment small-scale research setting...
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Considering the Chinese can't seem to make children's toys without lead in them and dog treats that dont kill thousands of pets I'd be a bit skeptical at any Chinese Vaccine.
Disclaimer: I'm an ethnic Chinese and I feel the urge to respond to your post (probably out of solidarity with my very distant PRC cousins?). Sure, there are morally dubious companies in China and given the lax/non-existent regulatory framework for many industries there, it is hardly surprising. However, data for medicine and vaccine trials need to be published for scrutiny by the entire scientific community before it is accepted as a treatment option. Do you trust accept Atripla as a treatment option for HIV just because it is developed by a 'good ol American Company'? Or approved by the FDA? I think you trust the data on Atripla because many scientists around the world working on HIV treatments have critically examined the data and raised no objections to it.
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Sure, there are morally dubious companies in China and given the lax/non-existent regulatory framework for many industries there, it is hardly surprising.
Yes just like companies in Europe substitute horse meat instead of beef, and sell it as beef
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Yes just like companies in Europe substitute horse meat instead of beef, and sell it as beef
You will find unscrupulous companies and people no matter where you go in the world.
Something I've always said; "People are people wherever you may find them. There are angels and there are assholes of every creed and culture, in every nation and on every continent. We are all of the same race - the human race."
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given the lax/non-existent regulatory framework for many industries there
Sounds like a Republican dreamland!
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Okay, let me explain. I was facetiously responding to mecch's post where he said something about capitalism controlling a "cure." Since capitalist countries have led and still lead in AIDS research I posted what was an obvious tongue in cheek reference to the stunning research being done in China and North Korea. So you see, it actually was kinda-sorta on topic. I freely admit that I have no inside information regarding North Korea and AIDS research. If I had to guess I would say it didn't exist. Or a cure for AIDS for that matter. You may now return to your regularly scheduled programming.
I didn't get your first reply to Mecch as, in my opinion, China is capitalist. It's just State controlled, kinda-sorta. ;)
There are some significant research trials that are taking place in India, however what with the several beauracratic hurdles and bottlenecks-and because of lack of funding several endeavours can't properly take flight. I did meet one top virologist who is trying to kick-start vaccine clinical trials specific to strain C of HIV (most prevalent in South Asia). He was trying to raise funds when I last spoke with him.
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Kinda expected this thread to be a downer, but like how it turned into a discussion on Chinese investment into HIV research. ;) Ive been poz for 4 years now, visit the research section on here maybe once every couple months when im feeling down. Mostly out of wishful thinking that some cure is just about to be discovered, and happier days are coming soon. I dont like being told unrealistic expectations that something radically different is around the corner, but I kind of need that hope at the same time to keep going.
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i agree, this thread went totally off topic.
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I feel slightly responsible for that.
In retrospect, I wish I hadn't made that comment about Chinese research.
(And of course I hope I didn't offend anyone)
But these "How far have we gone?" threads never go very far, do they?
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How can a thread go too far off topic when a rhetorical question is posed? It's not like asking who the President of the United States is.
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it is time to have a moderator who will make sure replies are related to main topicc.Going off topic is plain rude.
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it is time to have a moderator who will make sure replies are related to main topicc.Going off topic is plain rude.
maybe they should dock our pay ... oh wait a minute , we don't get paid we are volunteers .
We would be getting criticized if we micro managed every post too ... so what to do .
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How can a thread go too far off topic when a rhetorical question is posed? It's not like asking who the President of the United States is.
Wash, rinse, repeat.
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it is time to have a moderator who will make sure replies are related to main topicc.Going off topic is plain rude.
Hmmm, am I the only one that thinks moderator criticism is off topic here? Now that I think of it...criticism of moderator criticism is even more off topic.
Now, to get closer to the topic (note that my interpretation of the rhetorical question about how far we have gone includes musing about where we are going and where we may see biopharm advancements) here is a good article that explains China's biopharm development in some detail and I think supports Dr.Strange's comments.
http://tinyurl.com/China-BioPharm
JM
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it is time to have a moderator who will make sure replies are related to main topicc.Going off topic is plain rude.
This forum is run by a "staff" of, at the most generous, six people. At best, two global moderators are on the forum. Usually one. Often, none. Thos eof us who moderate AM I INFECTED and this section do what we can when we can.
Almost all of us are volunteers. You want moderators who will micromanage threads?
Willing to pay them/us?
Willing to pay for forum access?
Willing to pay for those who cannot pay for it?
Sorry for chirping in. That just rubbed me sideways.
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it is time to have a moderator who will make sure replies are related to main topicc.Going off topic is plain rude.
New to the internet, I presume?
oh wait a minute , we don't get paid we are volunteers .
Oh, you get paid most assuredly. Those dingleberries of yours are very hard to extract every week. Crusty, nasty creatures.
On another note I think China-bashing is OH.SO.TEDIOUS and it is simply symptomatic of the insecurities of Western culture. Personally I never indulge in it.
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On another note I think China-bashing is OH.SO.TEDIOUS and it is simply symptomatic of the insecurities of Western culture. Personally I never indulge in it.
Now that just made me ;D
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Hard to say how far you have gone if you don't know where the.finish line is.
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it is time to have a moderator who will make sure replies are related to main topicc.Going off topic is plain rude.
Everybody gets so much information all day long that they lose their common sense.
Gertrude Stein
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How far have we gone?
From a death sentence ( like accelerated aging, in my opinion) to a manageable condition for those who have access to treatment.
"Rome wasn't built in a day, but Margaret Thatcher wasn't the foreman on that job"