CROI website still blocked

1 October 2013. Related: Treatment alerts.

In the last issue of HTB we reported on the disappearance of the website for the Conference of Retroviruses and Opportunistic Infections (CROI).

The site is all still intact and makes up an archive of 20 years of the most important HIV research. But access has been blocked because of a bureaucratic wrangle that has enabled one person to flick a switch and stop global free access to this single most important HIV information resource.

Nearly every oral presentation, plenary session and memorial lecture – at least from the last decade – was accessible with simultaneous access to slides. This was because thousands of scientists committed their findings to an open policy that should be the goal of all medical research presentation and publication.

Although CROIs use of over zealous bouncers to eject any activist – whether a doctor or advocate – who wanted to fact-check reports using a few back-up photographs of data-filled slides that flashed data for a less than a minute during crucial late-breaker sessions – has always seemed excessive – the main drive for access to information afterwards has been groundbreaking and essential.

Research does not exist in a vacuum. Good medical reports usually link to previous presentations and related studies. If those references vanish then years of reporting are undermined.

Advances in HIV, especially relating to clinical management, shifted to conference presentations rather that reliance on peer reviewed publications. This is not to suggest conference presentations replace peer reviewed literature – which continues to be essential for a thorough presentation of any study – but can shorten the time between research discoveries and application to clinical care.

Guidelines writing groups routinely rely on CROI presentations as sufficiently important to reference in clinical recommendations. Twenty-three references from the most recent US DHHS HIV guidelines, in eight of the main thirteen sections are to CROI abstracts that are now no longer freely available. [1]

Researchers commonly include CROI as a data source for meta-analyses across a broad range of clinical management topics. [2-5].

As this issue of HTB went to press, neither the community letter below, nor requests to Melissa Sordyl at Westover Management Group, have been acknowledged or replied to.

Westover Management Group recently appears to have extended its ownership of the retroconference.org domain name from Jan 2014 to Jan 2015 and if that is the case, it is difficult to understand why the domain has not been transferred to the new CROI secretariat so that the site can be restored. Whatever business disputes have occurred, these surely pale into insignificance compared to the huge importance of keeping this information available for the global community working on HIV/AIDS.

A new website has been set up for the 2014 CROI (www.croi2014.org), which is now being organised in association with the Internaltional Antiviral Society USA.

References:

1. US DHHS Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents (February 2013).
   http://aidsinfo.nih.gov/guidelines
2. Pillay P et al. Outcomes for efavirenz versus nevirapine-containing regimens for treatment of HIV-1 infection: a systematic review and meta-analysis. PLoS One. 2013 Jul 22;8(7):e68995. doi: 10.1371/journal.pone.0068995.
3. Bavinger C et al. Risk of cardiovascular disease from antiretroviral therapy for HIV: a systematic review. PLoS One. 2013;8(3):e59551. doi: 10.1371/journal.pone.0059551. Epub 2013 Mar 26.
   http://www.ncbi.nlm.nih.gov/pubmed/23555704
4. Loutfy MR et al. Canadian HIV Pregnancy Planning Guidelines: No. 278, June 2012. Int J Gynaecol Obstet. 2012 Oct;119(1):89-99.
   http://www.ncbi.nlm.nih.gov/pubmed/23125998
5. Rokas KE et al. Role of raltegravir in HIV-1 management. Ann Pharmacother. 2012 Apr;46(4):578-89. doi: 10.1345/aph.1Q616. Epub 2012 Apr 10.
   http://www.ncbi.nlm.nih.gov/pubmed/22496475

Community advocates letter to US government partners of the Conference on Retroviruses and Opportunistic Infections

To:
Francis S. Collins, MD, PhD, Director, National Institutes of Health
Anthony S. Fauci, MD, Director, National Institute of Allergy and Infectious Diseases
Jack Whitescarver, PhD, NIH Associate Director for AIDS Research and Director, Office of AIDS Research
Thomas R. Frieden, MD, MPH, Director, Centers for Disease Control and Prevention, Atlanta

August 6, 2013

Dear Sirs

We are writing to express serious concern and dismay regarding the shutting down of the website for the Conference on Retroviruses and Opportunistic Infections (CROI).

Although we appreciate that you do not have control over business disputes, both the National Institute of Allergy and Infectious Diseases and the Centers for Disease Control and Prevention are listed as scientific partners in this conference, and the financial and intellectual investments of publicly funded institutions and scientists have been vital to the success of CROI, rendering it perhaps the single most important annual HIV research conference.

CROI has also been a pioneer in making webcasts, abstracts, and posters available via the conference website; this online information is now referenced and linked to by a vast number of scientific papers and online articles.

Due to the importance of the CROI website to HIV research, we urge you to do everything in your power to intervene and resolve the current, unacceptable situation. Whether by arbitration, negotiated settlement, or other means, it is essential that the CROI website be placed back online in a way that makes original links functional.

Sincerely,

ACRIA, AIDS Action Baltimore, AIDS Foundation of Chicago, AIDS Policy Project, AIDS Project Los Angeles, AIDS Resource Center, Ohio, AIDS Treatment News, AVAC, Andrea Benzacar, Rob Camp, Community Access National Network, Julie Davids, Anna Forbes, Foundation for Integrative AIDS Research (FIAR), Nathan Geffen, Harm Reduction Coalition, HealthHIV, HIV i-Base, HIV Prevention Justice Alliance, Barbara Hughes, International Rectal Microbicide Advocates, John S. James, NASTAD, National Minority AIDS Council (NMAC), Ohio AIDS Coalition, Okaloosa AIDS Support & Informational Services (OASIS), Project Inform, Robert Reinhard, San Francisco Department of Public Health, San Francisco Hepatitis C Task Force, Treatment Action Campaign, Treatment Action Group, WORLD (Women Organized to Respond to Life-threatening Disease).