July 29, 2013

Legal Fight Darkens Leading AIDS Website

2013-07-29 14:00

A rift between board members who organize the largest annual HIV/AIDS meeting in North America has led to its heavily used website going dark in early July and confusion about where the conference will take place in 2014.

The 20-year-old Conference on Retroviruses and Opportunistic Infections (CROI) attracts up to 4000 researchers from around the world, and its website—a rich archive of abstracts, webcasts, and podcasts—has become a go-to spot for researchers, community advocates, historians, and journalists. The nonprofit CROI Foundation and the for-profit CROI LLC put the meeting on, and the dispute involves a falling-out between the two groups. “I’m not allowed by our confidentially agreement to divulge anything,” says CROI Foundation Board President Constance Benson, an HIV/AIDS researcher at the University of California, San Diego (UCSD). “We reached an impasse this past couple of years over several issues and decided we needed to go in a different direction.”

CROI LLC is run by Melissa Sordyl, a co-founder of the meeting and conference secretariat, who also sat on the board of directors of the CROI Foundation with a high-powered group of HIV/AIDS researchers. Sordyl says that the foundation terminated their agreement. “They have not made any effort to reach out,” she says. “They only talk through lawyers.” She says that CROI LLC owns the website and took it down at the beginning of this month simply because they no longer have an agreement with the foundation.

Benson’s husband, UCSD HIV/AIDS clinician and researcher Robert Schooley, launched CROI with Sordyl after the U.S. government began to restrict travel of its scientists to international conferences in the early 1990s. Several groundbreaking discoveries have been announced at the meeting over the years, including the success of combinations of antiviral drugs, the origins of HIV, and the cure of Timothy Brown. According to CROI Foundation tax reports to the Internal Revenue Service in 2010, it has become a big business, with nearly $8.9 million in net assets. (It’s unclear from the tax reports how much CROI LLC received in payment for its services.)

HIV/AIDS advocates in particular have lobbied the CROI Foundation to resurrect the website quickly. “CROI is established as the most important HIV scientific meeting, and their commitment to the website is unparalleled in the medical field and should be a model for other disease areas,” wrote Simon Collins, co-founder of the U.K.-based HIV treatment information website i-Base, in an e-mail to others in the advocacy community. “The website is a vital resource not only as a record of previous meetings, but as a free, open-access research tool. i-Base, along with many other community organisations, goes to considerable effort to include hyperlinks to abstracts, posters, presentations and webcasts in our reports. The reliability of the original URLs are an essential aspects of the site. The lack of communication is not helpful.”

Benson says that the CROI Foundation has formed a partnership with the International Antiviral Society-USA, a nonprofit headquartered in San Francisco, California, that will serve as the new secretariat and organize the meeting. Benson says they will announce later today that the meeting will be held on 3 to 6 March in Boston. As for the website, Benson says that they want to relaunch it as soon as possible, but it’s unclear how much of the archive material, which CROI LLC owns, will appear. “We’re going forward with putting whatever content we have on the new website,” Benson says. “We are in discussion about what can be done to reestablish materials on the previous website.”

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