No Details Allowed – My Interview with Anne Lifflander of the Vera Institute of Justice

WBAI Radio New York on Incarnation Children’s Center Scandal:

Please find below my correspondence with the VERA Institute of Justice, which purported to be doing an investigation into the NIH/ICC orphanage clinical trial scandal. Reading their questions to me, and their refusal of my materials during the interview, you can get a sense of what the VERA Institute accepts, and does not accept in an interview with a journalist:

1. No names, no dates, no files, no interviews, audio, video, no pertinent, relevant, detailed information can be given to a VERA interviewer during a VERA Institute interview.

2. But questions about “feelings” are fine.

Anne Lifflander, VERA Institute Researcher, requests interview with Liam Scheff

— Anne Lifflander alifflander [at] VERA.org wrote [Aug, 2007]:

Dear Liam,

I hope this e mail finds you well and having a good summer.I am writing to follow-up on the previous correspondence between you and Tim Ross about VERA’s Clinical Trials Project.

As you know, the VERA Institute, at the request of New York City’s Administration for Children’s Services, is researching questions related to the enrollment of foster children in clinical trials of treatment for HIV/AIDS.We would very much like to interview you for our study. The final product of our research will be a report to the public.

You can choose to be interviewed confidentially (your name will not be mentioned as an interviewee in our final report) or for attribution. If you choose to be interviewed for attribution, we will allow you to review any part of the report where your name is mentioned or where you are quoted.We will ask you to sign an informed consent before the interview.The interview protocol has been approved by VERA’s Institutional Review Board.

I am very much looking forward to hearing from you soon.

Anne

Anne Lifflander, MD, MPH
Senior Research Associate
VERA Institute of Justice
233 Broadway

Liam Scheff to Anne Lifflander – Accepting invitation to interview for VERA study.

From: liam scheff
Sent: Tuesday, August 21, 2007 2:50 PM
To: Anne Lifflander
Subject: Re: VERA Institute of Justice

Hello Anne,

Give me a ring this week at [private non-work number withheld here]

Of course, I will happily be interviewed, and supply my materials to your research.

Bests,

Liam

ps – I’m moving back to Boston next week, so am here on the east coast, and can do things in person, with enough warning for preparation.

Lifflander to Scheff – Requesting a meeting place, directions and establishing approximate time

— Anne Lifflander wrote:

Dear Liam,

I am very much looking forward to our interview on Friday.I will be flying to Boston on Friday morning, arriving at 9:45AM.I don’t know
Boston very well and have no idea how long it will take to get from the airport to wherever we will be meeting.

Where would you like to meet and can you send me travel directions for getting there? I anticipate that the interview will take about two hours.

I will be sending you the informed consent and a guide to the questions we will be discussing on Tuesday or Wednesday.

Enjoy the holiday weekend!!!

Anne
Anne Lifflander, MD, MPH
Senior Research Associate
VERA Institute of Justice
233 Broadway
New York, NY 10279

Scheff to Lifflander – Giving directions and suggesting a meeting place, as requested by VERA Institute Researcher


From: liam scheff
Sent: Sunday, September 02, 2007 11:35 PM
To: Anne Lifflander
Subject: RE: VERA Institute of Justice

Hi Anne,

Thanks for the note. I see you’ll be sending questions, that’s good. If I have any questions about materials after I receive your list, I’ll ring.

I’m going to bet it’ll run a bit (or more) over 2 hours. There is a lot of material and ground to cover from my end.

As to where in Boston – well, there are a dozen lovely hotels, with nice lobbies and bars and restaurants, good for meetings, for sitting in reasonable comfort, etc.

If you are coming into the city, that might be best. Something in the Copley Place perhaps (it’s downtown, easily accessible).

I take it you are leaving the same day? If so, you are coming into Logan airport, and will either take a taxi or the “T” downtown. (The “T” is the MBTA – subway – easy enough and much cheaper).

It shouldn’t take more than an hour to get from the airport to downtown, probably less, once you’ve cleared the rigamarole at the airport.

You can look here for information on public trans. from the airport to downtown.

http://www.mbta.com/

here for airport info specifically
http://www.mbta.com/schedules_and_maps/subway/lines/stations/?stopId=15417&lat=42.372714&lng=-71.03208

My recollection is that it’s a shuttle bus to our little subway.

Here Copley Place, and its many hotels.
http://www.fairmont.com/copleyplaza/
http://www.google.com/search?q=copley+plaza%2C+boston

Finally, I won’t be able to meet until 11am at the earliest on Friday. A little later would be better, 12 or 1. You’ll have to tell me when you
are leaving.

Let me know what looks good to you,

regards,

Liam

Lifflander to Scheff – confirming Hotel as meeting place for interview, establishing time table, sending questions (see following letter).

— Anne Lifflander wrote:

Dear Liam,

Thanks for the information and suggestions.I arrive in Boston at 9:45AM and leave at 4:55PM the same day.I’d like to stay longer but have family obligations that I need to be back for.It’s not much time, so if you can make it by 11AM, that would be great.

I think the idea of meeting in a downtown hotel is a good one.You name the hotel and I will be in the lobby.

This is considered a research interview, which may be confidential or for attribution.Whichever option you select, we will ask you to sign an informed consent form. I am attaching a copy and a guide to the interview questions for you to look over.

I am really looking forward to this interview and to meeting you.

Please call me or e mail if you have any concerns.

Anne Lifflander, MD, MPH
Senior Research Associate
VERA Institute of Justice
233 Broadway
New York, NY 10279

vera-questions.png
– Lifflander Questions

Liam Scheff to all VERA Institute Staff, regarding Anne Lifflander’s Termination of Interview with Liam Scheff

Saturday, September 8, 2007 4:20 AM
From: “liam scheff”
To: mjacobson [at] vera.org, nweiner [at] vera.org, kgoldstein [at] vera.org, “Anne Lifflander” alifflander [at] VERA.org
Cc: mjacobson [at] vera.org, nweiner [at] vera.org
subject: VERA Institute of Justice – Violation of stated goals for my interview by Anne Lifflander

To VERA Staff and Director,

I am writing to express my dismay and alarm at the interview I was given yesterday, one which was terminated by the VERA staff member while in progress.

I am the journalist who broke the story that is the basis of the research into orphans used in government drug trials. I had certain expectations for the interview, none of which were met.

I was under the impression that I would be permitted to give actual, viable information to the VERA Institute that would allow them to do further investigation. And that, because I was being sought for an interview, that my work was actually wanted, or desired for this investigation. Neither of these proved to be true, in actuality.

Instead, I met with a number of repeated roadblocks. First, I was told that in order to make interviews I have done with other people usable, I would have to verify their validity to the VERA institute. When I tried to do this, by giving personal material to the VERA interviewer, I was told to stop.

Second, I was prevented from giving any relevant or viable material concerning an actual, meaningful investigation into the use of orphans in Aids drug trials to the VERA interviewer, who refused to take from my hand the disks I had put together expressly for the purpose of the interview.

In truth, I have little idea about why I was chosen to be interviewed, if whatthe interviewer or the VERA Institute was seeking was a palliative, near-meaningless regurgitation of my “feelings” about what had happened. My work in the ICC story was as the primary investigative journalist who brought the story to national and international attention.

I spent a great deal of time and energy, (and candor), sharing and explaining in good detail the basis for a critical understanding of what is happening in the Aids paradigm, especially regarding the standard (non-standardized) method of Hiv testing.

My materials for review of the evidential understanding of my criticism were rejected; the verification of the personhood of my primary sources was rejected, though it had been demanded, less none of my research material featuring interviews with sources be rejected.

I was treated in what I consider a strange, and I think, disingenuous manner by the interviewer, Anne Lifflander, whose training and expertise in any field I have come to be concerned over. I have rarely met a person so uninviting of discourse, of revelation of important material for an actual investigation into a matter so terribly, horribly serious as the use of orphans in government/pharmaceutical drug investigations.

In the end, I was not permitted by Lifflander to relate much in the way of meaningful information regarding the Incarnation Children’s Center. When I would attempt to, I would be interrupted by protests that I had mentioned a child’s name. I am the journalist who broke the story; I had no idea that the investigating body into the question of ethics in this abuse of children would have so little interest in gathering actual, viable, useful information.

I stated the name (first name only) of children who I knew, to Lifflander only, who protested that I shouldn’t state their names. I have no idea what this means. If you are seeking to do research, how could it be possible that you wish to be given false names upon which to base your research?

I had been demanded, or informed, by Lifflander, that no interviews with that had already been published and verified by journals would be usable, unless the identities of the persons interviewed could be re-verified by the VERA Institute. I offered to do that immediately, by giving some audio from my interviews with two adult sources, on the condition that they not be released publicly.

I tried to play some of a file for Lifflander in our meeting, to let her know what she would be hearing and from whom. At that point, she ended the meeting. I should say, actually, that she told me that she had to go to the bathroom, disappeared for 10 minutes, and returned, saying that she had called legal council, and that “this interview is over.”

As a journalist, I made it clear that I am free to write about any experience that I have, including my interview with VERA. She also cited this as a reason that she was “ending the interview.”

One of the protests seemed to be that we were in a hotel lobby, a public place. The reality was that we were in a distant corner of the lower lobby of a large hotel, with sufficient ambient noise and music playing in the hotel, to drown out non-local conversation.

The other issue here is that I was made a tour-guide by Lifflander, who asked me to choose a location in Boston to meet. I am not accustomed to meeting a person who is going to interview me, and also establish the location for the interview, that meets all of their hidden criteria and guidelines.

Given Lifflander’s many needs for a certain ambience and specific privacy concerns, I would have expected that she would have simply spoken with me on the telephone for important parts of the interview. Or, that she would have behaved like she was a professional interviewer, and established a site for the interview herself, without impinging on the interview subject to do her work for her.

I have trouble understanding all of this, from the point of view of utility, if the VERA Institute’s goal is to understand and investigate what actually happened in the ICC orphanage, and what is happening in Aids medicine, from a critical point of view.

I have even more trouble understanding any of it, given that my research is publicly available, publicly published, and that I do name names in my work. I do question received wisdoms, on the basis of major conflicting evidence, I do not report what is the conventional wisdom in Aids, or in anything I cover, but that I always try to get beneath the surface (because there is always a surface to get beneath), and see the actual structure of any public edifice or paradigm.

That is to say, I am clearly, by my work, a contentious figure, whose work is probably polarizing, but survives because it is remarkably, defiantly well-researched.

Why the VERA Institute would claim to want to interview me, and then pitch me nothing but self-limiting, emotionally-manipulative, softball questions, is beyond me. Unless your purpose was other than interviewing me for useful information.

In any case, because my interview was terminated by the VERA staff member, and because all relevant information I had agreed to give VERA was likewise rejected, I see no reason why I should freely sign off on permitting any information gathered by Lifflander to represent my work, my person, or my involvement with the investigation.

She proved herself to me to be a terrible investigator and gatherer of information. I remain in a state of shock that a person of her apparent inexperience and demeanor was sent to interview me, unless, and I repeat this question, the purpose of contacting me was something other than to gather useful information for investigating what happened at ICC?

Given the circumstances, I hereby withdraw any permission I may have been falsely convinced to give to the VERA Institute, under falsely stated pretenses by Lifflander, to record an interview with me or to use any material from an interview for your research.

I instead direct you to my website, and the body of research that is there regarding the ICC investigation.

Sincerely,

Liam Scheff
http://liamscheff.com

(please see the Investigation section for the materials relating to the ICC orphanage investigation).

PS, Immediately below, I have included the verbatim questions I was sent by Lifflander (many of which seem to have more to do with “feelings” than with research into orphaned children being used in government clinical trials). I tried to answer her questions by being as open as possible, but this was not acceptable either.

Following that you will find the email exchange in which I am sought to arrange a meeting place for Lifflander’s staging of the interview.

VERA Institute Questions for Liam Scheff

1. Can you tell me about yourself? I know that you are a journalist and have written a lot about HIV/AIDS and other science related issues. How did you come to do this work and what is your training and background?

2. How did you come to be involved in the issue of foster children with HIV/AIDS?

3. A major focus of your reporting on this issue has been on the Incarnation Children’s Center and you have interviewed former staff and residents of ICC. How did you come to be connected with them? Did you do any additional interviews besides the ones that have been quoted in your articles and in shown in Guinea Pig Kids? Did you approach other employees, family members or residents for interviews?

4. There has been a lot of reaction to your articles about ICC and clinical trials. Did you expect this kind of reaction?

5. During the New York City Council Hearings on this issue, some of the people who testified characterized critics of the clinical trials as “AIDS Denialists.” How do you feel that statement?

6. Based on the research you have done, as VERA reviews the files of foster children who may have been enrolled in clinical trials, what should we be looking for in the files? What type of analysis should we do? How should we present the information?

7. Do you have suggestions for us about who we should be interviewing for this project?

[Yes, and I tried to make them. They were rejected].

Response from VERA Institute, Michael Jacobson


From: “Michael Jacobson”
To: “liam scheff”

Dear Liam,

We have received your email about the interview this past Friday (September 7th). I think there have been some misunderstandings which we should clear up. One of us will get back to you shortly with a fuller response to the various points you made.

Sincerely,

______________________________
Michael Jacobson, Director
VERA Institute of Justice, Inc.
233 Broadway, 12th floor
New York, NY10279
mjacobson [at] vera.org

Response from Michael Jacobson pt. 2


RE: VERA Institute of Justice – Violation of stated goals for my interview by Anne Lifflander
Thursday, October 11, 2007 9:03 AM
From: “Michael Jacobson”
To: “liam scheff”

Dear Liam,

Please find enclosed my response to your email of September 8.

Sincerely,

Michael

Attached letter explaining why the interviewer was unwilling or unable to receive any pertinent information from me during the interview regarding the details of the NIH/ICC clinical trials. [VERA letter.pdf]

vera1.gif

vera2.gifVERA

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7 thoughts on “No Details Allowed – My Interview with Anne Lifflander of the Vera Institute of Justice

  1. It looks like the Vera Institute had little interest in actual research. Given the “outcome” of their “research”, one might think they had an agenda to adhere to.

  2. I don’t know about the entire organization, but they were extremely self-limiting in what they would and could accept in terms of data, research, names, evidence, etc.

    The final Vera report is not, apparently, final. Just talking with a NYC radio reporter who said that Vera is now saying that there were 80 deaths, and then 25 during trials, but also that 1/3rd of the remaining number of children were also deceased.

    Waiting to confirm all of this, but it’s very clearly a superficial report, and something of a whitewash – or a substantial whitewash.

  3. I listened to the interview. After hearing Ms. Lifflander speak, I thought she was channeling Jeanne Bergman. I can see why she wouldn’t want any information that calls into question the wonderfulness of AIDS drugs. Easily the most disgusting/disturbing part was her insistence that the kids who died in the trials already had “advanced HIV/AIDS disease”, and of course, that’s why they died, right?

  4. Four part comment:

    1. Numbers

    2. The major lie of the VERA INST.

    3. Vera obfuscation on kids being removed from home

    4. ICC Kids today

    1. Numbers – they’re playing awfully loose. There are a lot of dead children, and you get the feeling they don’t dent the conscience of these people:

    25 chlidren die during studies

    and then what’s the 80 (or, remaining 55)? Right after?

    You know they pull participants out of trials when they’re ‘not responding’ well. That is, you can be dying in a trial, and so will be pulled out, and then not die ‘in the trial’, but die “in foster care.”

    “If investigators identify important drug interactions requiring modification of the combination regimen, or if there are early regimen-terminating toxicities, the trial will be halted to address these concerns.”
    http://www.clinicaltrials.gov/ct/show/NCT00001108?order=30

    Right, so, you have a sufficiently bad reaction – you are excused, but what’s the effect? And what’s the change after the ‘trial?’ The drugs are the same – there are 3 classes of drug, and these kids aren’t going to be put on vegetable soup and cartoons after bottoming out or nearly dying in a trial. They’re back on AZT and Bactrim, and Saquinavir – same as the ‘trials’ drugs, just no records being kept, Glaxo and Pfizer and Squibb not getting paid twice (once for the drug, once for approval of the same drug to use again in new combination).

    And they’re all in foster care – it’s not like the 25 who died were in special containment in a spacelab somewhere, getting ‘cutting edge therapy.’ They were in the ICC, or wherever foster ‘family’ in the city would take and drug them.

    See the interview with Dr. Catherine Painter – the trial meds are picked up from the pharmacy like all the others. http://liamscheff.com/2007/04/28/the-icc-investigation-interview-with-dr-katherine-painter/

    “So if a child is on a treatment protocol, they would undergo that monitoring, testing, protocol entry, supply of an experimental drug through um, their outpatient clinic – and we can um, maintain um, that treatment here.

    So If a child is on an experimental drug, the um, clinic site, um, supplies the drug to the child, um, and their caregiver of course is the one who actually picks it up, either the nursing aid who accompanies them from a store or their parent or caregiver, and brings it back, picks it back to us if, if it’s not a drug that’s available through a pharmacy.”

    QUESTION: Does VERA INST give any details in their 500 empty pages of how any children died? On what drugs? After what studies?

    And then, VERA admits under scrutiny – 29% of the remaining 417 children are now dead?

    Is that correct?

    About 121 more? Is that correct?

    How are they filleting these numbers?

    What is the VERA number, after all are added?

    Is it 80 plus (approx) 121?

    approx 201?

    Out of 532 children.

    38 percent of these children are dead? And this is a recommendation for these drugs? And the paradigm in general?


    2. The major lie vis-a-vis VERA INST:
    “Vera medical staff did not find, however, that any child’s death was caused directly by clinical trial medication.”

    Directly? Is that a word game?

    Did the drugs help or hurt?

    Have patients given these drugs died from them? (Answer – Yes).

    Did VERA have access to any patient’s medical records (Answer – No).

    Go figure.

    3. The second major lie of the ‘study’: No Children Were Coerced into Trials (none were taken out of their home to be put into trials).

    Why were kids put into foster care? Why were they taken away from their parents or homes?

    Adherence. This is how kids were ‘being referred to’ the ICC:

    Dr. Painter: I often say that what we’re asking of our patients and our families in our recommendation, um, for their regimens and their level of adherence is actually something that is beyond 100 percent – patients are being asked to take all of their medicines all the time, whether they have them on hand or have run out, whether the pharmacy has filled and delivered the script, whether the clinic has responded for a request for a refill promptly, whether the medicines make you sick, whether you’re at home or away, whether you’re ill with an inter-current illness.

    ….

    So, we are having an increasing number of, um referrals over the last, um, oh several years for, um, primarily for helping to assess and intervene with medication adherence difficulties that patients and families are experiencing.”

    The VERA INST ignored this, and instead asked “Are children ever taken out of their foster homes for ONLY the specific purpose of being enrolled in drug trials?”

    Instead of examining reality:

    Q: “Are children removed from their homes for NOT TAKING DRUGS?”

    A: Yes.

    Q: “Are children who have been removed from their homes, placed in foster care, ever put in clinical trials?”

    A: They’re all in foster care – they’ve been placed there because their parents are drug addicts, or dead from drug addiction. Or, they’re placed there because their parents, or the guardians who have taken them in, don’t want to drug the children so severely with drugs that cause the children a great deal of pain.

    And that’s why and how they are “available” for these drug trials. Because they’re abandoned children, or children who are removed from home because of “adherence” issues.

    Did they ‘volunteer’ for these studies? During and after which 38% of them died?

    No, they did not volunteer. And their parents did not volunteer them, because they were FOSTER CHILDREN.


    4. On the kids today:

    I spoke with a source, a mother/guardian of two children, (now aged out of ICC), and talked about the ICC kids she and I both know who are alive.

    The reality is, none of the kids who gets out of there takes the drugs – and they all refused them as much as possible while in there, because the drugs made them vomit all the time. So, if these kids who are alive aren’t taking these drugs, then… what’s the purpose of these deaths, except .. nothing? Spinning wheels? Looking “productive” vis-a-vis the Aids diagnosis.

    Justifying malpractice? Medical murder? Or just the worst kind of pathological science, scientific and medical racism? Are these words too strong to describe these drugs?

    Here’s Nevirapine:

    Would you give this drug to your child? Would the staff of the VERA Institute drug their children with these drugs?

  5. VERA INSTITUTE on Hiv Testing of the children: The justification for putting them into the trials, and giving them a permanent, irrevocable, presumptively-fatal (and “dead already” in case of drug toxicity) ‘diagnosis.’

    Here’s their take: “And/or. Or/but, Or/or.” They list method after method, all boiling down to “If the doctor says so.” or “we’ll keep testing them with tests that test for everything (but no one thing) until we prove to ourselves that they’re really got the ‘permanent mark’ of presumed and enforced death.

    What would stop the VERA Inst from investigating the lack of standardization and the presence of wild cross-reactivity in Hiv testing? What would stop them? Who would prevent them from examining the justification for the trials?

    Or, they never were interested in examining the justification, only justifying the outcome?

    From the VERA INST Report:
    http://www.vera.org/publication_pdf/clinicaltrials-appendix.pdf

    “Children and HIV Testing. Soon after HIV was identified, researchers developed a test for antibodies to the virus.”


    [note – They developed the test first, see Robert Gallo’s research – he shipped the samples before the papers were published]

    The first antibody tests for HIV were licensed in the United States in 1985. When a person is exposed to a virus, their immune system makes proteins called antibodies. Antibodies help the body recognize and fight most viruses. They remain present in the person’s body and serve to prevent the person from becoming ill if he or she is exposed to the same virus again.

    [except magically in this case, where antibodies mean ‘dead already, and forever on drugs.’]

    Mothers pass antibodies to their babies in the uterus and during breast feeding, having the effect of protecting the newborn while the immune system develops. The presence of HIV antibodies in an infant indicates, therefore, that the mother is HIV positive.161 But it does not necessarily mean that the child has the virus. Virtually all children born to mothers who are HIV positive will be HIV-antibody positive at birth, although only 15 to 30 percent of them are actually infected with HIV.

    [Oh, really? The tests are positive when they’re not positive? Or people are “infected when they’re not infected? Or just babies? Or… ]

    Most of those who are not infected will have lost maternal HIV antibody by the time they are nine months old, although a few will carry it until age 18 months.162 Children who are born HIV positive, but are not actually infected with the virus, are called seroreverters, because their serum (blood) goes from being positive to being negative for the HIV antibody.

    [Do Hiv tests come up positive in people with more than one condition? (answer – yup, yes, si, you bet)]

    The HIV antibody test has two steps. An initial screening test called an EIA (Enzyme Immunoassay) or ELISA (Enzyme-Linked Immunosorbent Assay) is performed first. If the EIA or ELISA test is positive, a second, more specific, confirmatory test called the Western Blot is performed. If both tests are positive, the person is considered to be HIV positive. If the ELISA is positive and the Western Blot is negative, the test is considered to be indeterminate and must be repeated.

    [Golly, how is it possible to have two tests for the same thing give different results? Oh… right. That’s what they do. No standards, no singular reaction, only interpretation for ‘risk groups’ – Black, Hispanic, Poor – that’s who we like to test.]

    The two-step process is necessary because the ELISA, though easier and less expensive to perform than the Western Blot, can give a false positive result in a small number of circumstances.163

    [False results? Huh. Wow. How often? Let’s look in the medical literature. But, “No, why bother?” says the VERA Institute (though I certainly tried to present this med lit to Anne Lifflander, who would not accept even the documents for VERA’s research)]

    The antibody test, though effective in diagnosing adults and older children, could not accurately diagnose HIV infection in babies younger than 18 months.164 Finding abnormalities in the child’s immune system served as an indirect indicator of HIV infection in young infants who were HIV positive. In an HIV-antibody positive child who suffered from an opportunistic infection or had other AIDS-associated medical problems, the finding of abnormal T4/T8 cell ratios and abnormally high or low amounts of immunoglobulins allowed doctors to make a presumptive HIV/AIDS diagnosis.165

    [You’ve got to love that presumptive diagnosis. I mean, what would we do without the presumptive “you’re fatally forever infected, and we’re sure but we just can’t say for sure, but we know it, because we’re experts” diagnosis. That’s what good medicine is really all about. Right? No? No.]

    When the antibody test is the only diagnostic test available, children must be tested repeatedly until they are 18 months old before it can be determined if they are infected or only carrying the maternal antibody.


    [“Determined?” That’s a brave word for a process like this. Such courage these brave doctors show in ‘determining’ the fate of children of crack addicts, so that they can be Glaxo trial ‘volunteers.’ So brave, these good folk, on behalf of these babies born damaged by and addicted to Crack Cocaine.]

    In the mid-1990s, two other direct viral tests became available. The P24 antigen test measures the presence of P24 antigen, the core structural protein of HIV. Its primary use is to screen the blood supply. It was not considered sensitive enough to use in children under three months of age. Another direct viral technique called polymerase chain reaction (PCR) was developed. PCR amplifies genetic material in a blood specimen and measures the presence of minute quantities of the genetic material found in the HIV virus. Because it is more accurate and less complicated than viral culture, the PCR test became the preferred test for diagnosing HIV
    infection in infants. Based on the availability of new testing techniques, the CDC issued guidelines in 1994 for classifying HIV infection in children (see Figure 4.1).

    [Yeah, PCR. Anybody got anything bad to say about PCR as a diagnostic tool? You better watch your mouth! So what that it stinks, isn’t licensed, isn’t reproducible, and goes off the chart for parasite infections and everything else. It’s what we use! Get used to it! Brave docs, I’ll tell you. Such… courage.]

  6. Reminds me of the Mantoux test used for detecting tuberculosis worldwide. More than 80% of the population in the tropical countries (I am from one of them) tests positive for the test. It DOES NOT by any means indicate that you have the disease or are even at the risk of contracting TB. And people are doing MORE than just fine in those countries, and TB is practically eradicated in those countries.. It’s the Western medicine practitioner’s paranoia that if you don’t stick to “text book” knowledge of disease symptoms and engage in a preemptive strike, you are bound to be infected, and allow the entire population to be infected!

    So AIDS diagnosis to me appears like a similar story.. I am a molecular biologist, and routinely use PCR (there are different kinds of PCR depending on the level of sensitivity that you are looking for). While PCR used as a tool has revolutionized molecular biology in that it has improved our understanding of ourselves, it should be however, used with caution.

    Being a molecular biologist has allowed me to recognize its sensitive nature, and the “regular PCR” that I suspect is being used in diagnosis can only tell you whether the particular viral DNA is present or absent, which is only underscored by the alarmingly high frequency of false positives in diagnosis. Since its principle is that it amplifies 1 segment of DNA zillion times more, it cannot tell you what the viral load is in the cell. And viral load is a CRITICAL parameter in predicting whether you have the disease or not.

    For eg. You may have just 1 copy of the viral DNA and be just fine, because the body has evolved mechanisms to contain its spread. But if you have 1000 copies of the DNA, then you may genuinely be at a risk, or already have the disease. So it is critical to go for a test that is sensitive enough to pinpoint the middle ground, i.e. accurately quantify the viral load, and then deem whether at risk or not. There are other PCRs that can do exactly this….(called quantitative-PCR), but I suspect it can be an expensive test.

    So we as Scientists, Journalists, and the public should push for a test that is sensitive enough to measure exactly what the risk of developing AIDS is, rather than just resorting to the easy way out of…oops, you are testing positive but this test cannot tell you whether you have just one copy (might not develop the disease for all you know), or have 1000 copies of the viral DNA, so are at a risk of developing the disease! Life is everyone’s business, it is precious. So let us strive to recognize mistakes, and correct them rather than just resorting to the blame-game or escapism. Good work, Liam!

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