[UPDATE: This article originally published on March 11. On March 24, CROI 2021 organizers announced they would fully reverse their restrictions on access to conference materials and allow the public to freely watch all session recordings beginning April 15. In a statement posted on the CROI website, they also responded to criticims regarding their motivations for initially restricting access. Our original article continues below.]
In the shut-down world of COVID-19, medical science conferences take place virtually—and protests do, too. Such was the case this week during the Conference on Retroviruses and Opportunistic Infections (CROI 2021), which from March 6 to March 10 featured breaking, clinically important research on HIV and the novel coronavirus.
When conference organizers announced that the meeting would depart from tradition and withhold research data from the general public for up to six months, the global HIV activist community digitally sprang to life. The resulting controversy led the conference organizers to partially reverse course, but a lot is still left uncertain at the moment.
The Importance of CROI—and the Price of Admission
CROI, which started in 1993 and takes place annually in February or March, is generally considered the most important conference for new HIV research, alongside the biennial International AIDS Conference. Very often, research released at CROI ends up making headlines within The New York Times and other major media outlets. And the data presented at CROI often helps set priorities for HIV prevention, treatment, patient care, policy, and research for years to come.
But CROI participation is exclusive; roughly 4,200 people per year register to attend, according to the conference, and that number dipped to about 3,500 this year as the meeting took place entirely online. Most attendees are HIV clinicians, researchers, and health care professionals, including many global leaders in the field.
CROI registration is not cheap: Last year, before the meeting transitioned at the last minute from in-person to virtual due to the coronavirus pandemic, it was $785 per person—$885 if the person happened to wait until the last two weeks to register. Participants were later offered a $200 credit to reflect the transition to a virtual meeting. (A relatively small number of attendees are allowed to attend for free, including some scholarship recipients, people living with HIV, the media, and community-level activists.)
This year, because CROI was virtual, the registration fee was knocked down to $495—or $650 for those who waited until the final two weeks. The price knockdown represented a big hit for the CROI Foundation, which hosts and organizes the conference in partnership with the International Antiviral Society–USA, and which has no other source of revenue (such as annual membership fees) that support many other organizations that host large conferences. Unlike most other major HIV science meetings—prior to COVID-19, at least—CROI also has no exhibition hall or sponsored "satellite" events that would normally pull in revenue from pharmaceutical companies and other industry sources.
CROI Organizers Wall Off Data, and Activists Respond
Perhaps for that reason—to recoup money by attracting as many paid virtual participants as possible—CROI leaders this year made a radical departure from their longstanding policy of making all study abstracts and most presentation materials freely available to the public shortly after the conclusion of the meeting. This approach is a godsend to the many people in the HIV world who can’t afford or otherwise can’t make it to the actual conference.
This time around, the meeting organizers decided that full access to CROI 2021 materials would be available only to registered participants for the first six months after the meeting. A paid subscription option would also be made available to non-attendees who wanted the same level of access.
“It’s such a shame CROI did this, because otherwise it’s been a great virtual meeting,” said Lynda Dee, the cofounder and president of AIDS Action Baltimore. “Six months from now, when they plan to remove their paywall, this data won’t be nearly as meaningful. To not let it be accessible free to everyone who needs it is tone-deaf.”
As word spread regarding the CROI policy change, Dee and the rest of the HIV advocacy world reacted, releasing a sign-on letter addressed to the CROI Foundation and the International Antiviral Society–USA on March 9 “to strongly object to the plan to restrict public access to CROI materials for at least six months after the conference.”
The letter stated, “We recognize that there are significant challenges in running virtual conferences during the COVID-19 pandemic, but preventing access to research results—the bulk of which are from publicly funded research—cannot be the solution.” It called on the conference organizers to make “all conference materials” publicly available as soon as possible after the end of the meeting, which concluded on March 10.
The letter was signed by 78 organizations and about 150 individuals worldwide, including ACT UP, AIDS Treatment Activists Coalition, Black AIDS Institute, HIV + Aging Research Project, NMAC, Positive Women’s Network-USA, Prevention Access Campaign, San Francisco AIDS Foundation, and Treatment Action Group. Familiar names on the letter included longtime U.S. activists and advocates Moisés Agosto-Rosario, JD Davids, Lynda Dee, Mark Harrington, and Ernest Hopkins. It was a remarkable amassing of HIV advocacy leaders in a short period of time.
Copied on the letter were major HIV drugmakers including AbbVie, Gilead, Merck, and ViiV; the International AIDS Society, which hosts the International AIDS Conference; and the National Institute of Allergy and Infectious Diseases, the division within the U.S. National Institutes of Health that conducts HIV/AIDS research.
“There’s a worldwide outcry, because historically, CROI conference materials have been made available the day after they are presented,” said Mark Harrington, the executive director of Treatment Action Group. “It’s unconscionable—and it probably won’t raise enough money for them anyway.”
Conference Leaders Pivot to Promise Increased Access
CROI organizers heard the outcry. On March 10, they partially reversed course, deciding to make all study abstracts publicly available for free as of March 11, according to Mark Aurigemma, who manages media relations for the conference. The CROI website then posted on March 11 that the conference’s electronic abstract book had been made public.
Next week, Aurigemma said, organizers would meet to revisit the date on which they would make freely available other conference materials, including video presentations and “science spotlights,” which are a virtual stand-in for the research posters that conference participants are usually able to peruse in large presentation halls, with study leaders often standing nearby to discuss the findings.
“I’m delighted the CROI organizers are already clearly being attentive to this and responding in real time,” said Mitchell Warren, executive director of AVAC. However, Warren and Harrington both referred back to the final line of the activists’ sign-on letter: “We call on CROI and the CROI Foundation to seek other sources of funding to cover any fiscal shortfalls associated with the virtual format and to make all conference materials accessible to the public on March 11th, after the meeting ends (or as soon as possible thereafter).”
What Does the Future Hold for Major HIV Science Meetings?
Beyond the immediate controversy, at issue is the future of in-person conferences in general, noted Harrington. “COVID has shown us that the old business model for conferences isn’t sustainable,” he said. “They create a huge carbon footprint and are a major expense. The past year has shown there are other ways of doing them. There’s added value to being able to stretch out a conference virtually over a couple weeks instead of everyone showing up to cram it into a few days.”
Indeed, the organizers of both CROI and the International AIDS Conference are talking about switching to a hybrid model with both in-person and virtual components, according to a person close to the CROI organizers who was not authorized to speak about the matter officially.
Myles Helfand contributed reporting to this article.
[Correction: An earlier version of this article incorrectly implied that CROI typically makes money via pharma-sponsored booths in the conference venue or sponsored “satellite” events. This is not the case.]