there's nothing like it there's no disease no infectious disease that essentially kills everyone who gets one time that's gone and yet getting forty plus million people living with the virus it will die of aids over the past three decades humanity has rallied together for the good skies people from all walks of life have united us all social and economic boundaries joining hand in hand for one common purpose to end it maybe someday it'll come i can't say one despite all the major progress we have in chemotherapy of those patients none of these patients got rid of some of ours i don't think the pharmaceutical industry is very interested or invested in a cure you know and i don't mean to be too cynical but the reality i think is that you know the situation they've got now which is lifetime treatment with expensive drugs that kind of suits them pretty well what you're going to require some i was born in nineteen eighty a year before aids exploded on to the public consciousness i grew up in it that shadow like a child raised under the threat of the mushroom cloud you might say i am a member of the first generation i've never known a world without it this film is an account of my journey through the shifting sands found in aids has been front page news for nearly thirty years but how much do any of us really know about hiv and aids what is the difference between hiv and aids between hiv and aids is a really critical concept and unfortunately it's one that seems to escape a lot of people are just they don't remember it after hearing a child iris aids is a syndrome caused by infection with the virus they don't get discovery is there continue to be debate over age hiv why is there no peer insight to answer these questions i needed context the past is prologue so my journey begins with a step back in time the national center for disease control is reporting more cases of rare and deadly diseases found in a homosexual man there is no apparent explanation for the albright obviously well unfortunately i have to take credit for coining the term grid which stood for gay related immune deficiency we were seeing a cluster of gay men who were suddenly critically ill  pneumonia which was the indicator disease of something new and reported our findings to the c d c i was the chief of the s t d division at the c d c at that time when the draft report of five cases of new assistance in gay men came across my desk for review is back in like one thousand pearly eighty's there was double digit inflation and very high unemployment rapid military buildup and a threat to decrease domestic programs and this led to reductions in force in the public health service particularly the c d c the centers for disease control c d c in atlanta was under threat for abduction and even theoretically for closure once people recognize that this was likely caused by a virus the media attention went from no news coverage to the most covered news story in history people went from neglecting it to disease it's a based on needs immunity deficiency aids is not a disease or it is a whole lot of different things depends on what country you're in when you see four count falls below a certain arbitrary level by definition you have a you know when someone's the count goes down if it goes back up again it's you know politically they may still have aids medically i don't think they do if you develop any of a number of opportunistic infections diseases that puts you in the category of a we don't know what age is a just so hard to define the change the definition of it every near the definition of aids has broadened over time was revised as i see five they get but then again  ninety seven the changes in the definition have been political every time they change the definition the numbers go up the definition is changed many of the biggest change was probably in one nine hundred ninety three which they then you know added the cd for cow and hiv you know and so you could already be ill but if you had a cd four count consistently below two hundred you know a closer look at the centers for disease control's documents reveals that aids numbers actually declined in one nine hundred ninety three but a retroactive definition change increased the estimates by more than one hundred percent the more diseases they  the better the chances they get patients under that umbrella the more patients they could catch as time goes along you know definitions get used for a variety of issues and some of those are not based soley on scientific decisions but politics what capitalism and reimbursement comes into play for example a person with hepatitis c even say here in san francisco you got hepatitis c and only have its eyes see you're shit out of luck have an aids diagnosis you know i get a free apartment the city of san diego pays my apartment  can have the state of california pay for many medications related to hiv i get social security benefits i can get discounts on my supplements at the local health food store i also get food stamps and home support of cleaning services so i was basically a healthy person walking around and yeah i had all these wonderful little per say now you get all these benefits i mean though that with that we fought for and got but the end result has been a sort of an imbalance i mean we succeeded and i'm glad we did but it is a little unfair politics insurance capitalism benefits you can be sick or healthy i never would have thought that aids was so convoluted right as i said that that that has changed how you define that scientifically has changed quite of n which is makes it difficult to know for the lay people to understand is a makes it difficult for me to interpret them africa is purported to have the highest incidence of aids cases on the planet so  south africa to witness firsthand the impact of aids on that channel tunnel around ten million of south africa's forty eight million people have been reported to have aids it's only a ten minute drive from cape town first in modern airport in africa in the absence of very sophisticated laboratory support even though by one nine hundred eighty five there was a hiv test most of africa didn't have access to it so one of the things that we did in that meeting was to in and hash out the so called banky criteria for the diagnosis of aids in africa the idea was what would be a simple way for a clinician to look at a patient and say that this patient likely has aids somebody who has a combination of certain signs and symptoms like major weight loss and if you have a combinational that you can say this is probably somebody wit they wanted a clinical case definition where they could decide that someone had aids just by looking at weight loss and a persistent fever and so on it did something to clinicians in africa to diagnoses and that helped in the overall effort to count cases because we needed to know what was the impact of the of the epidemic they could discover aids all over africa at that point they could say that we are  nations have been led to believe that in some instances that they've got large percentages of their population infected and doomed because of this sexually transmitted supposed sexually transmitted virus i ever i become teen then it could be one of the symptoms i have to ask myself why now why this time dr christian fiala argues that many doctors have misused the bungay definition in the era before guide as aids defining even before the advent of aids people could have tb and not having hiv and fulfill the bunkie criteria they lose weight they'd have tb and they could look like they have aids when they don't is this by definition still being used today i'm fairly certain that in many parts of africa where there is still no little or no testing available that that definition is still used and i wouldn't be surprised if it's used in the poorer parts of asia i don't know what it is anymore i don't know what we're talking about anymore when we talk about aids is one thing and greenwich village and i'm very different thing  d i visited the world health organization's website searching for answers and discovered there are currently more than twelve different definitions of aids worldwide so i turned to dr james chin former class taught me that diseases and syndromes cannot differ from country to country like languages it was becoming clear that a child being aids were distinct separate entities and that aids was diverting my attention from the real culprit she says we have your test is all you need to come in and get it and i was like tell me now show she was like can we really need you to come in and tell me i said then i know it's posit shell or you would just tell me over the phone and she's like him don't panic you can still have a normal life i can still remember a space i can remember his eyes and all he said was i'm so i'm so sorry i think you should put your affairs in order and here you might have five i said shall i have to get off the phone right now i have to go tell my dad he started crying this isn't the way it happens in the movie it's seven a m here in johannesburg south africa and i'm a little nervous because i'm about to go in for my first hiv test have you ever gone in for an a t v test no no no no no the nearest testing center wasn't enough hospital or in a doctor's office but on the main concourse of a bustling train station the needs a few portable tents hiv testing facilities are everywhere from street corner kiosk to shopping mall hiv antibody test for blood specimens in low risk populations has not been evaluated they don't know in their terms even how well this test is going to work in people they don't want to work  caution i decided to investigate the testing protocols used throughout the developed world when we're testing people for a child me the first thing we do is a screening test and it's usually a test called the elyse but there are also now available rapid essays that can be used to screening methods because they're faster and we all know faster and cheaper is more efficient and it doesn't mean that the patient be used as a definitive measure of infection that's why we use a screening test to pick up all the cases but we use a confirmatory test to eliminate any false  it should be emphasized the most of the developing world uses only screening test to confirm an h i v diagnosis there are no confirmatory tests nine days after returning home stephen shells pediatrician ran a battery of tests on lindsay including an h i b test even though lindsay had tested negative for the virus in romania and the nest and said we've run into some problems with  the testing that you did at methodist hospital and you need to come right in and see me i said well what is it says well i can't i'm not going to tell you over the phone i said i need to know exactly what this is you said  t she test positive and he said she'll have a twenty percent chance of living to age two i was just a shock just a shock after all this joy and happiness finally found her daughter and i'm dancing around her mania and i come home and it's like so many could just snap me and then i had to call my mom and that was the worst phone call i've ever had to make because i remember saying that poor girl she's just not going to make it so that we don't have to go to somebody and say well you might be infected but it might be a false positive we do a second t called the western law in one thousand nine hundred two when i was told by my doctor that i was eight hiv positive that was only a reversible admission to me she didn't give me the written paper that came from the lab that tested my blood i found out that it says this indicate possible infection by a virus there can be mistakes from the antibodies test and there are conditions that can cause the test to be inaccurate now that i've got the package insert for that test kit it says positive results using any specimen type should be followed with additional testing this is the test that they used to confirm with this has a margin of error done properly that's extremely need a western blot and it's become a it's a turbulent sea of argument about how can we use this test when can we use this test why does this test have no standard we have a group you know about forty patients that have no detectable virus in their body but are not being treated so the first question is are they really infected so the rest of us can have felt positive no the whistleblower was negative too but they were told they were positive by a lab yes they misread the western blot heavyweight champion tommy morrison tested positive in one nine hundred ninety six eleven years later in two thousand and seven he tested negative multiple times allowing him to return to the ring there is constant discussion in the community of people who do diagnostic testing in the blood bankers about how to release tests when you're looking at this question but how do you determine what is  you need a certain number of depends a little bit on the producer test it depends on the manufacturer is there different criteria for what might be a positive but there are different criteria from the manufacturer thank you for the word and also there are guidelines from the w h o and you an aids hiv infection is diagnosed with rather now routine laboratory show me the package insert that comes with the western blot it contains eight different sets of criteria for diagnosing hiv infection because of the different criteria that apply in different countries you couldn't be considered country theoretically i could be diagnosed with aids in the united states but if i take three steps to my right i wouldn't be diagnosed with aids or i would lose my aids diagnosis when i crossed the border hundred two i was encouraged by a doctor to take what's called a nature test as a matter of social responsibility and i was shocked and devastated and horrified when the results came back positive it was one of those moments that everyone fears their whole life a week later i take the same test to an eight specialist he looks at says this isn't a positive test i don't know what this test means since a false positive looks like a true positive how can you ever distinguish whether it's truly a positive or a negative well that's a great question it's going to be very hard to determine  a false positive so i take the test again and this time my results come back marked from the indeterminate i'm faced with a decision do i want to wait six weeks to test again or do it right away i opted for right away my results that time come back positive to again negative i took it again positive what happens if put in late december of two thousand and seven i read about new legislation passed in new jersey calling for the mandatory testing of pregnant women or newborn infants should the mother status be unknown the mandatory testing the me is a no brainer i'm very much opposed to the concept of mandatory testing of any population because the tests are scientifically shown to be unreliable and inaccurate you have no reason to fear this bill and my hope is that a venture only this will become a federal law so that every woman in this country would be t positive you are considered confirmed infected with hiv but at the bottom of the page in fine print it states a person should have additional testing it does not allow you to tell a single person on this planet was hired by rolling stone to investigate and the bank president mbeki is misguided ideas where to begin the numbers my first in south africa alone it's about a thousand people dying every day for me if you're an advocacy agency and you perceive low numbers to be bad your bias may be to accept higher numbers even if they're not scientifically sound i know a jim quite well and i was the chairman of the steering committee on epidemiology of the global program on  evidence it's possible that he didn't read the materials we sent them or he didn't understand them and we did send the information to anybody that wanted to know about the estimate because they were pretty transparent in an attempt to get to the bottom of the statistics debate i've come to geneva switzerland to look at the world health organization's official numbers and what we found there are no numbers only assumptions and estimates how are the monies divvied out the states for aids prevention or aids treatment how is government monies sent out to different states and communities the more aid more money you get was spent on aids in poor countries ten years later it's ten billion dollars that's unprecedented increase still not enough when that was created the first thing  that u n aid is an advocacy agency pure and simple and this was my first objective when i came into this job and that was put it on the political agenda he divested himself of all of the program aspects and the scientific aspects of aids this is not a scientific issue this is a matter of politics except one unit he kept sort of the numbers you are really doing a major disservice to say it is not as bad as it looks like because actually it is much worse one month after my interview with dr the indian government slashed their estimates by nearly compared you know in april of two thousand and eight congress approved a fifty billion dollar expenditure for aids treatment and prevention the vast majority of the world's population is not at any measurable risk of hiv infection no measurable risk growing up in the age of aids i was taught there are three certainties in life death taxes and contract hiv from unprotected sex if you don't use a condom there's a lot of chances that you can actually get th i did a study of the heterosexual transmission of hiv in california and we recruited individuals who were infected with hiv then we recruited their sexual partners and we looked at whether transmission in fact had occurred haiti and runs the study it's a ten year study with the world's most virulent terrifying sexually tremaine this thing jumps excuse me off of penises and vaginas miles away how many of them do you think after ten years with the world's most terrifying virulent sexually transmitted disease came a pause no nobody nobody nobody who was negative came up positive i think in chinese is more difficult to transmit than other sexually turned then a lot of probably most other sexually transmitted diseases and i think that's pretty widely known if i would have protected sex somebody who is a heavy positive how many acts that i have to engage in before i got the virus is one thing one with enough one is you know remarkably h i v is a difficult infection to transmit this contradicts everything i was ever taught about the sexual transmission hiv aids is the best example of what's really scary and alarming and dangerous about our culture right now which is that it's a culture of a p r it's a public relations phenomenon the truth doesn't matter what matters is the image the conference was held before any of robert gallo's papers were published therefore before any other scientists had a chance to review them and look at the evidence and see if he got it right or wrong gals philosophy wants to have people to whom he would give the virus be in his own control so that any information that came out of that was would come through him so that he got all the information and you know often put his name on publications and w quote collaborate with them but should you have any broader view other than his personal glory and your personal glory it is not a scientific pursuit anyway the u s department of health and human services decided from now on we not going to do it you need certain co factors co factors are not necessary doctor without the need for anything of this kind of ridiculous the data that indicate that any different type seventy years plus now he's going to remember things that we all remember things that are good for us and we forget the ba growing body of dissent on a scientific question in august of ninety two my dad had just read his latest national review and there was an article with is to my mind just potty he said i can't replicate this in my office i can't get this virus to do anything we thought oh my gosh my dad is a rainy day dreaming he's trying to wish this all away because  in light of all this scientific uncertainty i asked dr fauci for evidence linking each i v to immune deficiency disease when you put the combined findings of the initial characterization as distinct retrovirus isolated by montana and his group together with gallo linking the virus to being the cause of aids and put those things together and that's how we have a confirmation of the causative agent of age of aids and we saw that photo we certainly suggestive but not convincing dr gallo one year later published photographs he claimed to be of a child they were his any better these pictures were not so mcintyre at the birth group in australia and questioned whether there was everyman then found a virus i became consumed with researching that i could read from morning till night morning till night every day and every link to a new link and i would email it to these people and say where's the test i want to know and my dying and my contagious bit and they weren't even very kind they're just like great articles again how we times we have to tell you the it is crucial to understand that an aids diagnosis is forever it cannot be reversed or alleviated the stigma attached to people knowing that you have it and are living with it is worse than actually living with it i can't think of anybody who's ever been evicted from their apartment because they had breast cancer or because they had cerebral palsy i did a campaign to address that must the message is that if anyone is infected we are all  some have it medically some have it socially some have a culturally and at the end of the day if it exists anywhere it exists everywhere we don't all have it and when she starts shooting it it's probably you know we don't all have age living cells are complicated and how they work inside the body is even more complicated so there is still a lot of debate as to how  is in march of two thousand and eight the washington post went on to state that multiple surprises have reminded researchers how much they still don't know about hiv biology population cd for helper t cells the way that the virus gets into the target cell it fuses its membrane to the membrane of the cell i don't understand the fusion process i don't think anybody completely understands that we have a relatively poor understanding of how viral proteins interact with proteins in the  immune system no matter how many scientific journals says it is when you go to the basic research it doesn't prove it bluntly stated we have test that prove nothing remedies that kill and statistics manipulated to the point of absurdity ninety percent of global corresponds to areas of great poverty and squalor ironically while we may have been pursuing a phantom killer a shapeshifting assassin perhaps the real enemy has been hiding in plain view