Platinum Fleecing and the HIV/AIDS Industry
Posted by Henry Bauer on 2011/09/08
The late Senator Proxmire was infamous in the scientific community for his Golden Fleece Awards to the most obviously absurd research grants awarded by federal agencies. He was not always right where really fundamental science was concerned, but mostly he hit nails right on their heads, as for example over “an $84,000 study on why people fall in love . . . [or] a study on why prisoners wanted to get out of jail”. (It’s a bitter-sweet pleasure to cite a Wikipedia entry that appears to be sound.)
I was reminded of Proxmire by a just published study which concludes that poor quality of sleep is associated with poor adherence to antiretroviral treatment ( Saberi, Neilands & Johnson, “Quality of sleep: associations with antiretroviral nonadherence”, AIDS Patient Care and STDs, 25 [9, September 2011]: 517-524; doi:10.1089/apc.2010.0375; 18 August 2011; online ahead of print 19 July 2011).
As Platinum has replaced Gold in prestige-status credit cards, it seems appropriate to supersede Proxmire’s Golden Fleece Awards with Platinum Fleece Awards (though I regret that the phrase lacks the classical punning reference).
The Quality-of-Sleep article qualifies for the highest possible Fleecing Award because it illustrates so many aspects of today’s academic and research-community scams:
— There is no substantive reason to carry out such a study — no reason that potentially advances useful human understanding — but it does serve a number of vested interests.
— The authors benefit by adding to the list of publications on their CVs.
— Their Center for AIDS Prevention Studies benefits by demonstrating its ability to obtain grants and turn them into publications.
— The Center’s parent institution, the University of California at San Francisco, adds to its luster as a Research member of the University of California system, remaining in the forefront of medical science in particular.
— The University of California System adds to its stock of Research Excellence with which to impress politicians and patrons.
— Not least by any means, this publication benefits those who are charged with disbursing funds to fight the good fight against HIV/AIDS, in this case grants F32MH086323, K24MH087220, P30MH62246, and U10MH057616 from the National Institutes of Health. As every bureaucrat knows, it is vital that every penny of available money be spent so that more can be asked for by showing that worthy ventures went unfunded; without ever-increasing budgets, administrative empires cannot expand and their leaders cannot gain promotions and salary raises.
— And all this benefits the publishers of the Journal, who make their living by disseminating material whose costs are paid by research libraries and by grants provided to the researchers.
The lack of worthwhile substantive content is illustrated by the Abstract, which reflects faithfully the article’s numerous shortcomings:
“Poor quality of sleep (QOS) is frequently reported in HIV-positive individuals”
and also, of course, by innumerable HIV-negative ones
“however, despite its clinical and public health significance”
“few studies have examined the correlation between QOS and antiretroviral (ARV) adherence”
Perhaps because there is no point in doing so?
“The objective of this study was to estimate the prevalence of sleep disturbances, determine the characteristics of those with poor QOS, and establish the relationship between QOS and ARV nonadherence among HIV-positive individuals. We conducted a cross-sectional secondary data analysis of 2845 HIV-positive adults taking ARV therapy from the Healthy Living Project baseline cohort. Mean self-reported ARV non- adherence was estimated using a 3-day measure.”
“Self-reported” is, as every competent sociologist knows, a warning that the conclusions cannot be relied on. The idiocy of using a 3-day measure should be self-evident.
“QOS was assessed using three questions regarding sleep pattern changes, amount of bother from difficulty falling/staying asleep, and amount of bother from vivid dreams. Over 68% of individuals reported sleep pattern changes, 50.3% reported difficulty falling/staying asleep, and 20.5% reported bother from vivid dreams. Depression, suicidal ideation, unemployment, use of illicit substances, history of incarceration, and HIV viral load were all independently associated with poor QOS.”
WORRYING is likely to disturb restful sleeping. Being depressed, thinking about suicide, having no job, whatever brought on being in jail let alone having spent time there, and being told that you are HIV-infected are all good reasons for being worried. This conclusion satisfies the common generalization about sociological research, that it seeks to re-discover “scientifically” what everyone always knew anyway because it’s so trivially obvious.
Note too the innumeracy to which HIV/AIDS researchers seem so prone: reporting “50,3%” when the many assumptions and uncertainties suggest that an honest reporting would say “perhaps half”.
Bear in mind that “amount of bother” is self-reported on a 4-point scale, quantifying the unquantifiable and then using the numbers as though they meant something.
“Individuals reporting feeling bothered about difficulty falling/staying asleep had a 1.66 higher odds of non-adherence (95% confidence interval [CI] = 1.18, 2.33; p = 0.004). Those reporting the highest degree of bother from difficulty falling/staying asleep and from vivid dreams had a 1.42 (95% CI = 1.13, 1.78; p = 0.002) and 1.31 (95% CI = 0.98, 1.75; p = 0.07) higher odds of nonadherence, respectively.”
Huh? Those feeling SOME degree of bother had HIGHER ODDS OF NONADHERENCE (1.66) than those who felt MOST bothered (odds 1.42)? This is a NEGATIVE dose-response effect. the very opposite trend to what would happen if being bothered were causative toward nonadherence.
In any case, odds ratios of less than 2, at 95% probability level, are so small as not to be worth paying attention to — particularly given the imprecision that’s inherent in self-reporting by means of 4-point scales. When my urologist gives me at every consultation the standard 7-question 5-point scale and I truly use every effort to be accurate, the replicability is no better than 5%. In the Quality-of-Sleep article I found no mention of replicability — asking the same person to complete the same questionnaire at intervals to gauge reliability.
“With higher incremental reports of poor QOS there were considerable increases in ARV nonadherence. Recognition and timely treatment of sleep difficulties may result in reduced ARV nonadherence with beneficial clinical and public health implications.”
Or then again it might NOT result in reduced nonadherence and associated benefits.
How, in any case, could these sleep difficulties be moderated? With sleep-inducing drugs and their known and worrying side-effects?
An increasingly common part of the publish-or-perish research atmosphere is the proliferation of periodicals that make money by having the authors pay “processing fees” while publishing very cheaply purely on the Internet. Journals are started not (as in the good old days) because there’s a substantive need to disseminate useful information but because publishing entrepreneurs can make money. I continue to get invitations every few weeks or months to suggest a new journal title and act as editor; or to guest edit a special issue of some journal. Hindawi, for example, charges $500 per article; that might not seem much compared to page charges for traditional journals, but Hindawi’s are “open access”, published only on-line, which is very cheap. By happy coincidence, just as I was writing this, I got another invitation from Hindawi, this time to submit an article to AIDS Research and Treatment; and if I do it before the end of September, there will be no processing or page charges (e-mail from Lina Afify, received 5 September).
Bentham invites us to write e-books as well as to start new journals; their promiscuity in issuing invitations is illustrated by their invitation to me (15 June 2011) to edit for Current HIV Research a “Hot Topic” thematic issue: “thematic issues . . . are guest-edited by leading scientists in their areas of research emphasis” and include writing by “only very eminent contributing authors”. I contemplated offering an issue with contributions from, among others, Peter Duesberg, Marco Ruggiero, and Gordon Stewart; but decided against it given that all proposals are “peer reviewed”, undoubtedly by the same sort of people as those who achieved the demise of Medical Hypotheses. The money-grubbing nature of these ventures is quite unashamedly open, for instance my invitation had a P.S., “Please could you also refer the journal to your colleagues and other contacts in the field, including your librarian, for promotional purposes, submissions and subscriptions?”
The competition from these upstart publishers is causing some established institutions to join in the money-grubbing. Thus “Short Reports”, published by the Royal Society of Medicine: “we are holding the current low rate of £350 (+ VAT) per published manuscript for all submissions we receive until September 2011 . . . [and] offering a 10% discount on advance payments for 10 manuscripts” (e-mail invite to me dated 1 June 2011).
The Quality-of-Sleep article is in one of the journals founded by “Mary Ann Liebert, who launched new journals at every opportunity” (p. 156 in Harvey Bialy’s 2004 Oncogenes, aneuploidy and AIDS: a scientific life and times of Peter H. Duesberg). Her stable now includes almost 100 journal titles.
How monstrous and monstrously expensive the HIV/AIDS “research” industry has become is illustrated by a search of Bowker’s Global Books in Print: In 2005 that returned 10,000 hits for books concerning “AIDS” plus another 2700 for “HIV”. For journals, Ulrich’s Periodicals Directory listed 130 titles containing “AIDS”; half-a-dozen years later, the PubMed catalog returned more than 190 hits for periodicals having something to do with “AIDS”. The titles include Current Opinion on HIV and AIDS, Current HIV/AIDS Reports, Current HIV Research, AIDS Weekly, and also AIDS Weekly Plus; researchers are obviously well served with up-to-date information — though if they were to read about the up-to-date stuff they wouldn’t have time to do anything else. There’s also the Journal of HIV/AIDS Prevention in Children & Youth (ISSN:1553-8346), not to be confused with and presumably in competition with the Journal of HIV/AIDS Prevention & Education for Adolescents & Children (ISSN:1069-837X) as well as the apparently over-riding AIDS Education and Prevention as well as HIV Prevention Plus!. The social side of things is covered by such emissions as AIDS and Behavior, HIV/AIDS Policy & Law Review, Journal of HIV/AIDS & Social Services; and there are super-specialties like the Journal of Neuro-AIDS. Browse those 190-odd titles for yourself.
Say there are just the 130 journals listed in Ulrich, publishing — to be conservative — on average only 6 times year, with only 10 articles per issue; that’s still >7500 articles per year. We’ve had three decades of HIV/AIDS. Assume that the numbers of journals started at zero and increased only linearly. Then by now we’d have well over 100,000 articles about it. But what do we know as a result of all this effort? Not how HIV kills CD4 cells. Not why long-term non-progressors or elite controllers do their health-preserving stuff. Not why every attempt to find a vaccine has failed. Not why you can apparently conquer the virus with ARVs (decrease “viral load”) without increasing CD4 counts (“immunologic failure”) let alone keeping patients healthy (“clinical failure”). It’s far easier to list what’s not understood about HIV and AIDS than what is understood (in the mainstream, that is; dissidents understand quite a lot).
Years ago, in my specialty of electrochemistry that was not nearly as heavily populated as HIV/AIDS is today, it was already very time-consuming to try to keep up with the research literature, even with the help of Chemical Abstracts which made it possible to become aware of the contents of all the major journals in one place, a twice-monthly publication. Most researchers pay attention to newly published research only about what is most directly relevant to their own highly specialized experiments. For broader awareness of what’s happening, they sometimes look at “Review” journals that assess the research literature periodically in various specialties. HIV/AIDS lacks such periodic re-assessing, and that together with the unmanageable bulk of the research literature may explain why so much continues to be published that takes as basis something that has already been disproved earlier, like the purported correlations among CD4 counts, viral load, and patient health. All too many researchers publish but don’t read what others have published.
The avalanche of printed and on-line stuff illustrates that the purpose of grant-getting and publishing is individual and institutional self-promotion and profit-making. (Disclaimer: There continue to be many idealistic researchers who struggle to preserve their integrity under circumstances of pervasive corruption. I feel for them.)
Consider again the Quality-of-Sleep article. Perpetrate a thought experiment. Imagine that you would very much like to know why so many “HIV-positive” individuals do not adhere to their antiretroviral-drug regimen. What research would you propose to answer that question?
I personally wouldn’t propose anything. “Nonadherence” stems quite obviously from the well-known fact that patients find the drugs doing them too much immediate tangible intolerable harm. That’s why the matter of nonadherence became salient in the first place. Perhaps the drugs are so unpleasant that they even disturb the patients’ sleep, and that’s why there’s a correlation between nonadherence and sleep disturbances?
The only reason I can think of to propose a research study like the Quality-of-Sleep one is to find some topic that no one has yet published about and that might qualify for a grant. That gets harder all the time, of course, and acolytes of Senator Proxmire will have no shortage of candidates for Platinum Awards in HIV/AIDS. There may even come a need for Iridium Awards.
It’s not only hard to think of some original research topic within HIV/AIDS, it’s by no means easy to think up a new journal title having to do with HIV or AIDS.
This entry was posted on 2011/09/08 at 11:45 am and is filed under antiretroviral drugs, experts, Funds for HIV/AIDS, HIV absurdities, HIV/AIDS numbers, uncritical media. Tagged: HIV/AIDS industry, treatment nonadherence, useless research. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.