The recent XVth International AIDS Conference in Bangkok represented a remarkable aggregation of the best and most current information on AIDS: keynote presentations, nearly 200 sessions, 100 satellite sessions, hundreds of exhibitions, 2000 posters, community activities, workshops, off-site events, and much more.

Some useful information from the conference has made it online. The IAS (with Medscape) has posted a search tool for abstracts, there are two sources of news (newsletter and Kaiser reports), and there are summary rapporteur's reports (that are quite nicely presented). (I'm sorry to not link to these resources: the IAS throws up both technical and legal barriers to linking for some unexplainable reason.)

Nearly all of the conference information, however, is not online and apparently never will be. This is a great loss. The conference represents tens of millions of dollars of cost to hold, the IAS has most of these materials already in electronic form, and much of it would be easy to post. Posting materials involves getting permissions (which most will readily give) and covering costs (which should be easy) and the incentive to better serve conference participants and a larger global community (which apparently isn't there at this stage).

My recommendations to the IAS for 2006 would be to do two things: first plan for the first "electronic conference" that seeks to put as much as possible online (through the main conference site). Second I'd choose a vendor to build a parallel site in which participants and exhibitors can post and discuss conference issues as they see fit. This parallel space could potentially grow to be as important as the conference itself with proper planning, some resources, and necessary dedication.

One clear gap in the "information infrastructure" supporting global AIDS professionals is the lack of any widely-used online gathering place to share professional information. This Spring's information resources survey by the IAEN indicated diverse information resources in many areas, but few interactive offerings. There is no good online community site for global AIDS professionals.

Many professions have active online community sites. If I were a cardiothoracic surgeon, every day I'd be visiting CTSNet to interact with colleagues. If I were a particle physicist, every day I'd be visiting ArXiv (which has grown to 3500 research article submissions per month as shown in this impressive graph). But where do I turn as an AIDS professional? The closest model is probably the IAEN, but it hasn't had the funding base to grow to prominence.

What is necessary is a new online community site for global AIDS professionals, probably associated with UNAIDS (but not strictly part of the site) to allow debate across multiple topics. Ideally such a community site would help narrow the gap between policymakers in Geneva, New York and Washington, D.C., and those AIDS professionals battling the pandemic around the world.

In coming years there will be billions of dollars spent on AIDS medicines, most on generic drugs. The future of the AIDS response pivots on these purchases: they are the biggest line item in most AIDS programs, and programs and individuals will become totally dependent on continued future funding by "fickle" donors.

Unfortunately, there is relatively little good information online focusing on drug purchases. The Global Fund will be launching a drug price database (a big help), but other donors have not disclosed budgets or pricing information, and additional systems of surveillance of black market pricing or other data are not in place.

One step that would help greatly would be for interested donors to establish an "AIDS Drug Watch" Web site that would:

• Explain current issues with drug purchases (including contrasting perspectives of donors, Pharma, and countries);


• Aggregate drug budget information from different donors;


• Aggregate price data (as best possible) from different countries;


• Highlight areas requiring improvement.

Good recent examples exist of "transparency" efforts such as this, including the excellent "Oil Revenue Watch" sites of the Open Society Institute.

A "AIDS Drug Watch" site, to run well, would cost low to mid six figures per year, not a middling sum. It could play a key role, however, in performance and accountability of a principal element in our battle against global AIDS.

It has now been over a month since the Copenhagen Consensus concluded that AIDS should be at the top of the world's list in prioritizing development resources. Interestingly, there has been very little discussion of this stunning result within the AIDS community itself. I heard no mention of it in dozens of meetings in Bangkok last week. I find scant mention of it on Web sites for UNAIDS, the Global Fund, or WHO. I haven't yet heard anyone talk about doing a similar initiative focusing on AIDS.

Doesn't it make sense to do an "AIDS Consensus" exercise to recommend how the notional $27 billion for AIDS should be spent? There are two dozen principal interventions for AIDS, a half dozen key epidemiologic regions -- where should we put resources? Would it be possible to find scholars to write a couple dozen key cost-benefit analyses to be judged by a neutral, credible panel? It's impossible to answer resource allocation questions with precision, but certainly we can do better than we are doing now (trusting fate?).

Partners in Health has released an important new book, "Community-Based Treatment of HIV in Resource-Poor Settings". Reminiscent of the medical classic "Where There Is No Doctor", the book details with sophistication and clarity the treatment, management, data and communications issues for HIV patients in poor environments -- which is to say the overwhelming majority of those with HIV. The book speaks with the authority and pragmatism of the PIH professionals who have successfully confronted the HIV epidemic in Haiti and elsewhere.

I was directed to a terrific site today which I hadn't seen: Gapminder uses sophisticated animations to illustrate important data and trends with AIDS, global health, the Millennium Development Goals, and other issues.

The Global Fund talks a lot about transparency -- and acts on its word. Their Web site is an impressive testament to transparency, providing detailed information on proposals, grants and funding for the world to see.

Efforts at transparency should continue to improve. One feature The Global Fund will be launching shortly is a "drug price database" which will track the procurement price of ARV medicines as reported by all grant recipients. This will provide a powerful mechanism for promoting lower and lower procurement costs. Web-based "disclosure" programs of this sort have been powerfully adopted in other sectors (environmental issues, campaign subsidies), but this is the first good example I've seen applied to AIDS. In a perfect world there would be a parallel "black market" database, but congratulations to the Global Fund for moving this issue in a very smart direction.

When Jim Kim, Senior Advisor to the Director General of the World Health Organization. spoke in Bangkok about AIDS, he touched on many familiar refrains: challenges, goals, progress and needs. He also touched on one refrain new to my ear: opportunity. AIDS, in all of its devastation, offers an opportunity to address many issues in healthcare that have been neglected for decades. Because of AIDS, health centers are being built, health providers are being trained, healthcare finance is being restructured -- it's a long, long list reflected in the many diverse topics discussed at Bangkok. Jim speaks not only with credible credentials (Harvard training, co-founder of Partners in Health, recent MacArthur Grant winner), but with the experience of tackling TB for years in many difficult environments. He has seen that seemingly intractable problems can be addressed with new resolve, and AIDS is providing exactly that resolve to the international community, and as such, an impressive new opportunity.

The XVth International AIDS Conference's Web site does a nice job in presenting information and schedules about the conference. It misses many opportunities, however, to be much more effective in facilitating information flow and networking among delegates. Here are five ideas on how it should be improved for 2006:

1) Put conference content online: There is a great deal of information about the conference, but little from the conference: abstracts, presentations, posters, other information materials are available mostly in print or not at all.

2) Put delegate directory online: When I signed up for the conference, I gave permission to share my information with other delegates. But where is the directory? A good attendee directory is often the single most useful thing about attending a conference.

3) Search: With lots of materials online, a good search capability is required.

4) Links: Encourage links to the site through an updated policy and by building the site with unique URLs for each page.

5) Interaction: Every session, every satellte meeting, every training course lends itself to a unique home page which offers not only information about the offering but also the opportunity for delegates to interact. An easy way to do this is through a conference wiki, but a more structured community site would be the best option if there is sufficient planning.

The "real world" conference was very well organized and useful. The "virtual" conference can go a long ways to assisting delegates -- and ideally even those that aren't able to attend in person.

The Global Fund has made remarkable progress in thirty months. While many people deserve credit, much of the success is certainly due to Richard Feachem. He brings experience, stature, and communications skills few can match. Most impressively, he strikes a persuasive posture of inclusiveness, listening to others, reacting to advice, and structuring the organization in a way that is far more responsive to country needs than any other donor. His staff reflects this culture of inclusiveness, carrying an intelligent humility in every Global Fund presentation I've seen. Congratulations.

There is increasing attention being paid to AIDS monitoring and evaluation programs -- with a good recent step being the publication of the "Monitoring and Evaluation Toolkit" from leading donors. Most attention is paid to a unified m&e framework, consistent metrics, and initial studies to guage long-term success.

Planning efforts, however, appear to overlook one thing: the most important funding decisions concerning AIDS will be made in the next 24 months. Whether funding will continue to increase or level off is a near-term issue. The comprehensive data from m&e programs for the most part won't be ready, particularly concerning "outcomes" (outputs is easier: grants made, funds dispersed etc.).

How can we portray positive outcomes to government donors before good data are back (which might take years)? One important piece is through stories, sending journalists and photographers to capture, even if anecdotally, the impact of AIDS programs. The Global Fund does a pretty good job at this (their "Global Fund at 30 Months" report, for example), but certainly more can be done, including in a coordinated way among donors.

One important element of the Bangkok Conference is the "poster sessions" -- approximately 2000 (!) mounted posters with (in most cases) authors standing by. The posters represent a rich source of current material not found anywhere else. While it is hard to quantify, posters certainly represent a major percentage of all "content" at the conference.

Unfortunately, useful posters are hard to find (the guide book lists two thousand abstracts with no capability to search), and more importantly, once the conference is over the posters are gone.

One team I met from the US Census Bureau was frustrated by this issue in years past, and so they have a novel idea. They brought a team of three staffpersons with the responsibility of photographing as many posters as possible, developing the film, scanning the pictures, putting together the mosaic of pictures for each poster, writing descriptions of each poster, and putting all of the information into a database which might later be put online. It's a huge amount of work, but in their view worth it given the value of the information. It certainly is better than nothing and I applaud them.

But wouldn't it be easier for conference organzers to simply invite electronic submission of all posters? Or maybe they have them already from the application? Most posters are derived from Word documents, and those that aren't reside in various graphics formats. Why not put those online, make a huge amount of valuable content available, and save enormous effort and money?

US international aid programs are funded annually by Congress, which means they are by necessity subject to political unpredictability. US assistance for, say, immunications, student exchanges, or well-building programs routinely are ramped up, only to be quickly scaled back. Fortunately, many efforts are "sustained" even if funding is undercut: immunizations have long term benefits, exchange students have new skills, and new wells can last for years.

Providing antiretroviral therapy (ART) is different. A patient receiving ART needs medicine for the rest of their lives. If you stop the medicine, they die. There is no current prospect of a "cure" for AIDS, just long-term management.

Current US policy calls for providing millions of people with ART in coming years (two million through PEPFAR, plus additional numbers via the Global Fund and World Bank). This means that potentially millions of people in the relatively near future will have their lives directly dependent on the congressional appropriations process -- forever. I don't know of any other program in the history of US assistance where this degree of direct dependence has been true. It's quite easy to visualize troubling future scenarios.

Two ideas might help with funding unpredictability or burnout. First, a continued drop in drug prices will ease the dilemma. Perhaps some fraction of US funding could be steered immediately into research efforts targeted at "price bottlenecks". Second, US (and international) funders could take a multi-year view by establishing an endowed "AIDS Treatment Foundation". There are many examples of Congress endowing efforts in order to sidestep the short-horizon nature of US budgets. Such an initiative would assure at least some prospect of longer term commitment to patients throughout the world receiving ART.

In May 2003 President Bush signed the "Global AIDS Bill" which, among other things, established the "President's Emergency Response for AIDS Relief" ("PEPFAR"). The proposed $15 billion of funding for PEPFAR (over five years) represents the most significant jump in resources for Global AIDS (by far). PEPFAR has a number of characteristics with significant implications for AIDS policy, including limitation to 15 countries, limitation to $200m / year to the Global Fund, and a mandate to spend at least 33% of funds on abstinence and monogamy training. What AIDS organizations were influential in shaping the final bill?

A new report by Derek Hodel entitled "At the Crossroads: A Study of Federal HIV/AIDS Advocacy", includes, among other things, a detailed case study of advocacy efforts leading to final passage of the Bill. Hodel names about 30 organizations and individuals that played key roles, including:

AIDS Advocacy Groups:

AIDS Healthcare Foundation
Elizabeth Glaser Pediatric AIDS Foundation
Global AIDS Alliance
Health GAP
San Francisco AIDS Foundation

Development Organizations:

Global Health Council
Catholic Relief Services
Church World Services
Episcopal Church
World Visions
RESULTS
DATA

Individuals:

Paul Farmer / Partners in Health
Jean Pape / GHESKIO
Eric Goosby / Pangea Global AIDS Foundation
Nils Daulaire / Global Health Council
Peter Lamptey / FHI

What is notable about the case study is that it doesn't name any of the organizations that think of themselves as leading authorities on global AIDS policy: UNAIDS, WHO, World Bank, various UN reference groups, Gates Foundation, or others. It's true that these groups may have exerted influence quietly or indirectly, but I suspect more likely is that they really weren't involved. It isn't the job of, say, UNAIDS to lobby Congress, but at the same time if the most important AIDS policy organizations aren't clearly linked to the most important AIDS policy development in the last two years, the ties, even if indirect, should be strengthened. Two recommendations would be for these organizations to a) include in all policy recommendations notional budget allocations, and b) improve the dialog with advocacy groups that clearly have influence in AIDS policy and finance.

The study is not available online but is available from Suzan Ekmekjian at Ford Foundation, which funded the study.

The International AIDS Society, organizers of the XV International AIDS Conference, has an interesting Web policy which reflects the disconnect between important AIDS organizations and effective use of communications technologies. It in part reads:

"Linking to the websites: www.ias.se, www.ias2003.org, www.aids2004.org and www.ias-2005.org: Other websites wishing to link to the IAS websites shall obtain permission from IAS. Requests for permission to link may be emailed to secretariat@ias.se."

Permission to link? I thought this issue came and went years ago (see, for example, this Wired article from 2001). The IAS should be doing everything they can to encourage linking. They should be begging for links. Links drive information flow (and perhaps more importantly, search engine rankings). If the Web site for the most important international gathering on AIDS discourages linking, that is a big step backwards for all of us. (Incidentally, I note that the IAS main site currently has 287 links to it -- my little 25 person consulting firm has 2160.)

I suspect most reasonable people will ignore this linking prohibition. Actually, I just did -- three times. I hope I won't be arrested...