The Conference Must Go On

For the VIII International AIDS Conference, the Participation of AIDS Patients Is More Important Than Observing U.S. Travel Restrictions

When Harvard takes a stand, it rarely goes unnoticed. And with the decision to move the 1992 International AIDS Conference from Boston to Amsterdam, the Harvard AIDS Institute is declaring its opposition to what they term a discriminatory U.S. government policy restricting travel by those infected with HIV, the virus that causes AIDS.

But whether or not the move ultimately results in the lifting of the conditions imposed on HIV-infected people wishing to enter the country, its immediate result may be that some community health organizations and younger AIDS researchers will be prevented from participating in the conference because of the expense.

To Exclude or Not?

Over the last year, the fate of the conference--which was sponsored by the AIDS Institute and scheduled to be held May 1992 in Boston--was often in doubt, as the federal government considered whether or not a list of diseases justifying exclusion from the U.S. should include HIV.

Last November, Congress charged Secretary of Health and Human Services Louis W. Sullivan with updating the existing list, which included HIV as well as other diseases, such as active pulmonary tuberculosis.


In January, Sullivan presented the list, which did not include HIV, to the Justice Department for review.

But the Justice Department, which runs the Immigration and Naturalization Service, was concerned with the potential for increased medical costs and strains on resources if HIV-positive individuals entered the country.

When the department failed to render a decision on the list before a Bush Administration imposed deadline of August 1, an interim restriction preventing HIV-positive individuals from entering the country went into effect.

The restriction, however, includes a waiver that allows the HIV-positive person to enter the U.S. for the purpose of attending conferences, receiving medical attention, visiting family or conducting business in the public interest.

Despite the exemption to the ban provided by the waiver, the Harvard AIDS Institute announced on August 16 that because of the "continuing uncertainty" of the country's policy toward HIV-positive individuals, it would not hold the conference in Boston.

The decision to move it to Amsterdam was announced September 11 by the institute, after consultation with top University officials, including President Neil L. Rudenstine, says Harvey V. Fineberg '67, dean of Harvard's School of Public Health (SPH) and a force behind the creation of the Institute. The Netherlands currently has no travel restrictions for HIV-positive individuals.

AIDS Patients Instrumental

Those involved with planning the conference say that it must take place, even if it has to be in another country.

"We have all the more reason to continue working together to end the discriminatory U.S. policy, so that we can bring International AIDS Conferences back to this country, which have contributed so much and has suffered so much from this pandemic," says Jonathan M. Mann '69, one of the conference organizers and director of the Institute's International AIDS Center.

"We refused to let the progress of the conference be held hostage to one country's policy," Mann says.

Researchers and conference organizers alike say that not only was the move necessary to take a stand against the discriminatory policy, but that AIDS patients play an important role in the conference and the exchange of ideas that takes place there.

"A lot of important work against the [AIDS] epidemic has been done by infected people," Mann says. HIV-infected individuals have progressed from passive problem solving to active role playing, he says.

Other experts agree that allowing people infected with AIDS to attend the conference is both necessary and vital to the success of the meeting.

"A lot of people infected with HIV are involved in AIDS research," says Lasker Professor of Health Sciences Myron E. Essex, chair of the Institute. For example, he says, "they are involved in teaching about AIDS infection--in fact they are probably more involved as teachers and researchers than people with any other diseases."

According to attendees of past conferences, many speakers at the conference, who were HIV-positive, contributed an integral part to the conference.

"We couldn't do AIDS research without the participation of people who are infected with HIV," says Martin S. Hirsch, professor of medicine.

"The research we do is a collaboration among scientists and patients," adds Hirsch, a clinical AIDS researcher, and director of the Harvard AIDS Clinical Testing Unit. "This collaboration is both necessary and valuable in the process."

"The subject of the conference is the AIDS epidemic across the world," says Fineberg. And people with HIV "have a very important contribution to AIDS research," he adds. "They also want to share their experiences and perspectives. They have an interest to participate and should be allowed to participate in the event."

Researchers Affected

Although the decision to move the conference will enable the participation of HIV-infected people, it may limit the participation of some researchers as well as community health organizations and some AIDS activists, who lack the resources to travel to Amsterdam.

Research efforts by younger scientists may be hampered by the move, says one Harvard official.

"I think it will somewhat interrupt the momentum of AIDS research in the U.S.," says Essex. "A lot of younger scientists who don't have the resources to go to Europe will not be able to go to the meeting."

The move, Essex says, "will inhibit young people who want access to research done by senior scientists."

To many scientists supported by large research universities and the grants they command, however, funding the airfare to Amsterdam may not be a problem. Essex says that senior researchers often have a budget for traveling to meetings.

"The motive for research, and the conduct, will go forward regardless of where the meeting is held," Fineberg says. He adds that he doesn't think the move will have much effect on AIDS research in Boston or the United States.

Community Health Organizations

In addition to younger researchers, others with an interest in the conference may not be able to afford the expense.

"I would guess that one of the groups very strongly affected would be community health organizations often concerned with treating AIDS patients," says Jed D. Kolko '92, a member of the Boston chapter of the AIDS Coalition to Unleash Power (ACT UP).

"Many people who could use the information at the conference will have poor access to it."

"This is a missed opportunity for local activists to participate in the proceedings," says Thomas McNaught, a spokesperson for the AIDS Action Committee, a New England community-based AIDS service organization. "It is also a blow to people with AIDS who live in Boston who can't afford to go to the conference in Amsterdam and participate in the formal and ancillary proceedings."

The committee will still send members to the conference, McNaught says, but will not be able to send as many as it had hoped.

Citing a concern with travel costs, organizers say that while travel by smaller community organizations may be difficult or impossible, they will encourage them to take part in the conference and hope that they will still be able to play an important role.

"We hope that even those who cannot personally attend or participate will provide their support, so that we remain engaged," Mann writes in a letter sent to approximately 1300 community health organizations across the country.

But if such conferences still have to be held abroad in the future, says Paul A. Volberding, professor of medicine at the University of California at San Francisco, fewer and fewer Americans will have the opportunity to attend them.

Research at Full Capacity

While Mann acknowledges that high travel costs could lower the number of Harvard and other U.S.-based researchers who attend the conference, he says that several steps have been taken to ensure that AIDS research in this country goes ahead at full capacity.

Mann says that four scientists at Harvard who were representing their respective "tracks" of research for the conference now have Dutch counterparts who they will work closely with in planning research presentations.

"This is a practical illustration that the commitment is not going to change for Harvard researchers--all of them," he says.

Also important, says Mann, is that a larger proportion of researchers from developing countries will be in attendance at the conference. While much of AIDS research goes on in the U.S., these countries will have an opportunity to showcase their efforts and receive encouragement.

Still, organizers lament the lost opportunity to display Harvard's outstanding scientific facilities and the facilities of the greater Boston area.

"I don't think the location has any particular effect on research at American universities," says Alan G. Fein, executive director of the AIDS Institute. "There will be just as many opportunities for research, although there will be somewhat less of an opportunity to showcase research here at Harvard."

A Political Move?

Local activists have alleged that during the months of uncertainty about what the federal policy would be, more was behind the move than has been acknowledged by government officials.

Some AIDS activists say that with the International Conference taking place in Amsterdam, protesters would be deprived of a forum in the U.S. that would attract the attention of the American media.

"It's quite likely that [President] Bush is consciously avoiding further conflict with ACT UP," Kolko says, "although it remains to be seen whether the conference taking place in Amsterdam reduces pressure on Bush from these activists."

Kolko says that he thinks Bush is now aware that he must face ACT UP protests, thanks to one staged at the President's summer home in Kennebunkport, Me.

And some experts express hope that the current travel restrictions will soon be dismantled.

"I heard that the government is trying to remove the restrictions," says Volberding, who is president of the German-based International AIDS Society. "It would be too late for this meeting. But we still hope they'll do it and the conference will come back to the U.S."