PI Perspective #25

September 1998     View PDF

“Bridge the Gap?” or “Cut the Crap!”

The 12th International Conference on AIDS, while a useful and important meeting, not only failed to live up to its theme of “Bridging the Gap,” but perhaps inadvertently served to demonstrate how wide the chasm truly is between the have’s and the have not’s when it comes to AIDS. Despite an endless string of speakers who seemed to know that mere expressions of dismay about the plight of the Third World would provoke thunderous applause, there was very little evidence that the world had any intention of doing anything about it.

The Conference didn’t hide the fact that HIV infection is still no picnic for anyone. Most of the progress in treatment covered in this issue of PI Perspective is aimed at modestly improved treatment strategies with simpler regimens and reduced side effects, yet fail to deliver any true breakthroughs or hopes of an outright cure.

Drug companies touted once- and twice-daily dosing regimens, effective “protease sparing” cocktails and new ways to use old drugs. These are welcome changes, symbolic of a period of refinement that should produce modest improvements in quality of life, but they primarily apply to people just beginning treatment. True salvage therapy for people failing existing regimens remains elusive, though some hope was raised that near-perfect viral suppression may not be quite as necessary for clinical well-being as once thought.

Perhaps the greatest disappointments of the conference were the lack of any real progress in understanding the potential long-term side effects of protease inhibitors and the paucity of truly promising new therapies in the mid-term pipeline. What little we know of the side effect issues remains troubling and incompletely understood, just about where things were in February at the Human Retrovirus Meeting in Chicago.

The pipeline issue is especially troubling for those taking a long-term view and who realize that even the best of today’s drugs do not offer anything like a lifetime solution. The danger here is that industry and academia alike may coast too long and comfortably in the wake of the protease inhibitor cocktail breakthroughs of 1995–96. (see Antivirals Update).

Surely, the one message of the Geneva Conference that will linger longest is the stark contrast between a meeting which dared to choose as its theme, “Bridging the Gap,” and the harsh vision it presented of a world seemingly incapable of delivering on that promise. Even worse, perhaps, was the contrast between the theme and the garish extravagance of the industrial displays people were forced to walk through between events.

And then there were the bizarre evening “perk” events at which companies tried to outdo each other with lavish dinners and entertainment for their favored guests. To the 3,000 delegates from Third World and developing nations, it was as if the world was saying, “Your villages are dying? Let them eat cake.”

There is nothing new about flashy, expensive displays by pharmaceutical companies at medical conferences. It is, in fact, a tradition, even at previous AIDS conferences. But it’s time to re-examine this tradition in light of humane concerns about the epidemic.

To understand the problem, use your imagination and your best visualization skills to momentarily put yourself in the shoes of any one of the delegates who work in the plains of sub-Saharan Africa, the slums of Asia or the urban underworlds of South America. Mentally wearing these shoes, you find yourself coming from a place where there are no such things as protease inhibitors, combination therapies or simplified dosing. Where there is no prevention for opportunistic infections or any other form of prevention. Viral load testing and diagnostics? Get real. In many such countries, where the annual expenditure on health care is but a few dollars per person per year, a glass of clean water would be an almost unthinkable luxury for people living with HIV.

As a guest of some pharmaceutical company’s conscience, you came to Geneva and couldn’t quite figure out the Americans, who were constantly complaining that the air-conditioning wasn’t cold enough. But your eyes really widened each day as you were forced to walk through the exhibit halls to get to the presentations.

Most booths were larger than the homes of your middle class. They were staffed with dozens of well-paid and well-dressed representatives who spent their days in Geneva handing out color copies of presentations, showing expensive video productions on four-foot-wide exotic new high-tech screens called plasma displays.

You learned that the video display units alone cost about $16,000 apiece, and you marveled that many booths sported five or six of them. Plus computers, printers, Internet links and dozens of other gadgets you never see at home.

Then you got your first invitation to one of the evening events, usually reserved for “important” people like 1st world physicians and American and European AIDS workers and activists. You attended one event, held on a huge party boat out on the lake: dinner, high priced entertainment, free drinks, etc.

You found it hard to believe that this was only one of dozens of such events, so many that they caused frustrating conflicts among the invitees about which ones to attend. The strange thing is that you seemed to be the only person who thought there’s something odd about all this.

Now, still wearing those shoes, begin to ponder just how this would make you feel. Here’s how it affected a few voices heard on the floor of the meeting.

“This conference isn’t about ‘bridging the gap’,” fumed one African doctor to Village Voice reporter Mark Schoofs. “They’re here to show us how wide the gap is.” Zambian journalist Larry Hore expressed himself clearly, “I feel mocked.” Also speaking to reporter Schoofs, Consolata Odiemo Auma, a 32-year-old HIV-positive Kenyan woman who had never heard of such things as AZT, let alone protease inhibitors, said “Maybe if I ask them, they’ll give me the drugs.”

Fat chance. But she was not alone in trying. Similar thoughts occurred to many Third World delegates. Like the Thai physician who described how she comes to these conferences primarily to meet people—U.S. doctors, rich patients, drug company representatives, sympathetic journalists and scientists—from whom she could beg. Beg for a bottle of antibiotics, or a few months supply of AZT or 3TC from a patient who had died or stopped using the drugs. She compared this aspect of her work to that of Thai sex workers in Bangkok, saying “they don’t like what they do, but they send the money home to support their brothers and sisters. I don’t sell my body, but I sell my dignity, to get drugs for the children in my clinic.”

Such displays of wealth offered a stark contrast to the claimed purpose of the meeting—Bridging the Gap. Everyone talked about bridging that gap, but hardly a single speaker even attempted to propose a solution.

Perhaps more than in any previous year, even activists and AIDS workers had become accustomed to the scene, debating all too casually which of the night’s parties and events would be the best to attend, which would have the most lavish meals. Admittedly, there were a few productive meetings with pharmaceutical companies where ideas and strategies got debated with activists over simple fare, but far too many of the events this year had simply become parties.

The old days of activism, when activists constantly questioned their relationships with industry, have given way to a new era of activism, with less clear and rigid thinking about this issue. Some activists today are routinely playing the role of pharmaceutical consultant while accepting personal support from industry. It may be true that it’s hard or even foolish to run a major organization without taking advantage of the grants easily available from industry. It’s an effective way to fund service needs that might otherwise go unmet.

But when individuals take money personally for their own activities, hardware or goods, or when organizations exist almost solely on the basis of pharmaceutical funding, something has changed. Something has changed when scientists have come to expect to be carted off several times per year, at industry expense, to “pre-conferences” and special closed meetings in exotic locations around the world.

Something has changed when more community people are now working directly as employees of the industry than there are in AIDS activism, even if some such people are effectively fighting for change from the inside. Something indeed has changed when activists and scientists alike don’t seem to notice there’s anything wrong with the extravagant spending of industry at conferences like this.

“The Poor You Will Always Have with You”
A famous philosopher and religious icon once used these words to fend off a critical question about money being spent on his personal comfort. He had a point. It would be naive to think that ratcheting down the extravagance of pharmaceutical displays and evening soirees at the international conferences would somehow save enough money to solve the problem of AIDS in the Third World.

When will the Third World get protease inhibitors and combination therapy? Why, never, of course. The developed world has had the cures for malaria, tuberculosis, parasitic diseases and dozens of epidemic bacterial infections for decades, but these solutions have yet to be widely disseminated among the world’s poor.

So what good would it do to spend less on flashy promotions? If nothing else, it would reduce the level of cultural insult hurled collectively at the poor nations and their delegates, an insult that comes not only from industry but from all of us who have come to tolerate these displays and promotions year after year. It might say to people, “we may not be able to solve your problem entirely, but at least we’re not going to burn dollar bills in your face.”

Second, it might lead to some creative alternatives. Imagine, for example, the news and attention that could be brought to bear on the problem if a single major pharmaceutical company decided to change its behavior. Let’s say they bought only the smallest possible booth, staffed it with a single person and handed out only a single flyer. The flyer might say “In lieu of corporate displays, marketing staff and entertainment this year, we have chosen to redirect the money to staff and fund the XYZ Mother and Children AIDS Clinic in central Uganda for the next five years. For more information about our products and services, see our Internet site or call 1-800-555-1212.” To activists, they would say, “sorry, no dinners this year, no cruises on the river or lake, no entertainers flown in from the states. I’m sure you’ll understand. If you’re aware of other needy situations in 3rd world settings, please bring them to our attention.”

No one would lose critical information due to the lack of the company’s booth or special meetings. No one would be less inclined to recommend their products or write less favorably about their latest research studies. On the contrary, it might affect them positively.

If several companies followed suit, it would make the others still engaged in their displays look positively ugly. Plus, they’d be the only targets left for demonstrations and activist disruption. If most of them got on board and continued their financial support of the conference plus redirecting this “soft” money to worthy causes, at least a symbolic dent could be made in the Third World problem. Maybe it could or should be coordinated by the United Nations or by a private nonprofit agency. There are endless possibilities and opportunities.

We can’t pretend that this is a solution to the problems facing the world because of AIDS. But we must stop pretending that what goes on at these conferences is somehow acceptable. It may be perfectly normal and traditional for major U.S. and European medical conferences and annual medical specialty meetings to engage in such displays and perks to influence their audience.

But it’s not OK to roll out the same type of show, burning the same amount of money in a meeting dedicated to a plague that is primarily wiping out the most impoverished people on the planet. There’s a time and place for everything. The International AIDS Conference is neither the time nor the place for extravagant displays, parties, perks and costly entertainment.

As activists, we should be among the first to refuse to participate, and the first to demand an end to the circus these meetings have become. As the meeting moves into the year 2000 to the African continent for the first time, there couldn’t be a better time to change the nature and tone of what takes place there.

Indeed, there will be powerful forces that will resist change, particularly the local chambers of commerce and interests which see the huge expenditures associated with the meeting as “good for business.” They will no doubt argue that “good business” will somehow trickle down to benefit the sick and the poor, but by now, we should all know such baloney when we hear it. Let the 13th International Conference on AIDS in Durban, South Africa be the first one to make humility and respect for the poor part of the price of admission.

“How Much Money is a Lot?”
Conversations with several pharmaceutical companies give a hint of the kind of money burned at events like the 12th International Conference on AIDS in Geneva.

The number of companies exhibiting through booths was somewhere around 100 or more. The costs of booths varied depending on size, placement, and whether or not the company is also a paying “sponsor” of the meeting and at what level of “sponsorship.” A few examples serve to illustrate the real costs.

One well-known major firm, which did not offer extravagant dinners or evening entertainment, estimated its costs—exclusive of personnel and travel—to be somewhere in excess of $300,000, including a company-funded research “seminar.” Much of the booth material is reused at other conferences, but extravagances such as the rental of multiple plasma displays were unique to Geneva. The company sent approximately 80 people to Geneva, a major portion of whom came from the United States.

A second, similar company, which sent only about 15 people from its U.S. headquarters, estimated its per-person costs, including travel, meals and hotel, to be about $7,500. Like the first, this company avoided showy evening dinners and entertainment, but still shouldered the costs of dinner meetings with doctors and community representatives, as well as a major PR operation while on site.

A third major firm covered all the bases. Just shy of 100 people worldwide were brought to the meeting. There was funding for multiple evening dinner events, a lake cruise with a big name entertainer brought over from the U.S. at a cost of around $100,000 plus a bevy of seminars and satellite sessions. Though no numbers were offered, it’s easy to see that the toll ran in excess of a million dollars.

Dozens of other companies matched various parts of the packages, easily spending between $100,000 and $500,000. Companies also hosted dozens of community activists and AIDS service workers to come to the conference, picking up airfare, hotels and sometimes meals and all expenses. Who got such offers? Pretty much anyone who had the nerve to ask. For some, it was the only way to attend. For others, it was a perk that added little or nothing to the community presence or coverage of the conference, however much it may have added to their own.

None of these figures includes the cost of the many industry-funded “conference updates” that are held throughout the U.S. and Europe for community and physician groups after the conference is over.

Without much imagination, it’s easy to see that the grand total of industrial cash flashed at the conference would be in the tens of millions or more. And this is but one of such conferences, albeit the biggest.

It would be interesting to speculate what could be done in a single country, city or village with a single year’s promotional expenditures.

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