How many times in the past 18 years did we shake our heads and groan, “If we ran things, this damn disease would be cured”? Well, there's nothing like a brand-new millennium to make you realize it's time to put up or shut up. So we prepared to unveil our agenda—but first we had to get one.
We blast-faxed friends—activists, critics, community leaders and doctors—asking what they would do to end the epidemic if they had, say, the purse strings of Bill Gates and the executive power of Bill Clinton. Their very detailed answers encompassed the entire AIDS landscape, from research to prevention to what Elizabeth Taylor should wear to the trial of Jesse Helms. Flush with their ideas—and sweating from our attempts to forge consensus—we're proud to present this agenda, which spells out priorities for all of us in the AIDS community, especially HIVers themselves.
It's not all brass-tacks details about bills and pills, though there are plenty of to-do points. We've also included some pie-in-the-blue-sky notions to tickle your fancy.
Of course, this list is just a start. Now it's up to you to tell us what's right and wrong with it. And hurry up—come 2000, let's be ready to get our hands dirty.
First things first. Money may be the root of all evil, but we wouldn't mind getting our hands on some filthy lucre and distributing it as we see fit. The federal government—awash in cash from budget surpluses real and projected ($1 trillion may accumulate over the next several years)—is the obvious source. While Clinton wants to use this cash to shore up Social Security and Republicans plan to give it back to the rich in tax cuts, reserving $100 billion or so for all things AIDS seems like a no-brainer to us.
In addition to these surpluses, there are plenty of misspent funds floating around Washington, DC, especially those washing across the Potomac to the Pentagon. The Defense Department gets some $250 billion a year, nearly 10 times the defense budget of any other country in the world. Much of that money is earmarked for buying weapons that Pentagon brass don't even want, just to feed some legislator's taste for pork. Shifting at least $50 billion to cover our priorities seems reasonable—a long-awaited “peace dividend.”
But Uncle Sam isn't the only public body on our hot seat—after all, the world's richest nation does fund the vast majority of all AIDS research. AIDS spending has long been as paltry across the globe as lip service has been plentiful. Vital funds could be freed up in Africa, for instance, if the World Bank and the International Monetary Fund announced bigger forgiveness of the staggering foreign debts of poor, AIDS-ravaged nations—on the condition that the savings be spent on medicine and schoolbooks, not guns. The United States should also pressure those two agencies to target more money toward AIDS and other health threats rather than showcase projects like huge dams of questionable benefit.
With that money in hand, we can focus on policy. The next pages offer dozens of proposals, both petit and grand, that need to be on the table. With this community agenda, we can build a better approach to the epidemic so that by the middle of the next century AIDS is but a distant memory. No, let's make that the next decade. We're dreaming big.
1. Manhattan Project for a Cure
It's the only idea from the AIDS-crisis model that's still as good as new. President Clinton should announce that finding a cure is a top priority. He should throw his weight—and more funding—behind the Office of AIDS Research, giving it the power to truly provoke interdisciplinary thinking and accelerate AIDS research. If this office isn't up to the task, then it should be replaced by a completely new one with a stronger mandate. The nation's leading immunologists, virologists and other top researchers should be more intensely encouraged—via big money and other incentives—to come up with novel ways to attack the virus. Increased attention should also be paid to current exciting research angles, including basic immu-nology, the role of CD8 cells, fusion inhibitors (and drugs with other new HIV targets), long-term non-pro- gressors, antiretroviral “pulsing” and alternative therapies. And Congress should mandate an annual public report on research progress, written by an independent AIDS community panel, that sets priorities for the year ahead.
2. HIV Vaccine
Drugs that help keep the virus at bay can be had by PWAs in rich countries, but rarely elsewhere; a stable, cheap-to-produce vaccine is indispensable if we are to halt transmission and reduce deaths. To do that, global AIDS vaccine research has to be better funded and coordinated. Promising candidates must move rapidly into early human trials, and comparative studies of different candidates—alone and in combos—must quickly follow. The major players—the NIH, the U.S. Army, the International AIDS Vaccine Initiative, drug companies, the European Union and governments of hard-hit Asian and African countries—must sit down to determine which candidates hold the most promise for the next large-scale efficacy trials. Some first steps? Congress should pass the Lifesaving Vaccine Technology Act, and Clinton should meet with drug company execs to encourage privatesector activity. And to avoid replicating the stark disparities in HIV drug access, now is the time to plan how to pay for distributing a vaccine in the developing world.
An easy-to-apply topical substance that blocks anal and vaginal HIV transmission could turn around the epidemic—but who's really pushing to develop one? Progress could be fast if the paltry NIH budget and tiny number of trials in this field were expanded. Promising avenues include Ph-balancing products that create a hostile HIV environment, microbe-killing peptides and vaccine-like substances that could strengthen mucosal immunity where HIV strikes. And most could be woman-controlled.
Fifteen years after the late activist Michael Callen called for community-based research on transmission, we still know little about oral sex, let alone other gray areas. Can't grass-roots activists fight for better studies of HIV routes other than anal and vaginal sex and drug injection?
5. Salvage therapy
The new drugs that were “ending AIDS” three years ago are now failing half of all HIVers on them. The feds should provide initiatives to pharmaceuticals to make researching new therapies a better investment than designing fast-and-dirty copycat antiretrovirals. Plus we need studies on when to start therapy and with which drugs.
Five Easy Pieces
Let's vote in a Congress that will pass the Early Treatment for HIV Act (HR 1591), which would expand Medicaid bucks to asymptomatic HIVers. And require Medicaid to cover all FDA-approved drugs used to treat HIV, even those used off-label.
While we're dialing for dollars, let's get states to raise income qualifications for the AIDS Drug Assistance Program. Plus states and Congress should increase funds to accommodate all comers.
3. Compulsory Licensing
The Clinton administration should end its opposition to this policy in South Africa, Thailand and else- where, freeing cash-strapped governments to produce generic versions of life-saving AIDS drugs.
4. Parallel Importing
Let's get real. Every nation should legalize parallel importing, allowing HIVers to buy meds—many of which they'll be taking for the rest of their lives—wherever they find them cheapest.
5. Medical Marijuana
We're losing our patience along with our appetite. Decriminalize it now.
The Whole Shebang
1. Access to Care
Rich nations should kick in to a fund to improve health care infrastructure worldwide, especially basic measures that would pay off big, such as systems for clean water. In this country, the feds should implement a national single-payer health care system, just like the Clintons once promised.
National governments should work with pharmaceuticals to establish a fair two-tier pricing system for HIV drugs. This would allow drug companies to recoup R&D costs through First World sales, but mandate them to sell drugs near production cost to the developing world, where these firms currently make no money anyway.
Local AIDS agencies should receive funds to create a worldwide system of free, anonymous testing sites, which would provide incentives for people
Three Quick Hits
1. Needle Exchange
Are we waiting for a dozen more studies that prove these programs work? Decriminalize needle exchange in all 50 states and lift the ban on federal funding.
Congress should eliminate Gingrich-era federal incentives for teaching abstinence-only HIV prevention. And enlist Dr. Joycelyn Elders in a national school tour promoting frank sexual discussion.
Congress should pass the Comprehensive HIV Prevention Act (HR 2405), which would increase investment in domestic HIV prevention programs, establish a coordinating counsel on prevention and provide targeted funding for high-risk groups.
Grand Slams and National Campaigns
1. Media Blitz
Develop a massive public information campaign, kicked off by emergency prevention alerts on TV and radio, and continuing with prevention and treatment info in broadcast and print media, on billboards and neighborhood newsletters, targeting high-risk African-American, Latino, gay and other communities.
2. Condoms and Needles
Install free condom and safe-sex-literature dispensers in all schools, as well as in public facilities like bars, supermarkets, highway rest stops, public bathrooms, libraries and prisons. And set up needle-exchange and harm-reduction programs in every AIDS-hit neighborhood, as well as in prisons.
3. Sex Education
Require graphic, get-real, judgment-free sexuality education, including HIV prevention, in all schools, foster care systems and juvenile detention centers, from early childhood through college.
4. Community Education
Create a WPA-style program that would recruit people of all ages from communities hardest hit by AIDS, train and pay them well, and send them back into their communities to run health campaigns. These would mix HIV prevention with broader health and wellness concerns, including, for example, training on how to negotiate safety with partners and how to navigate the health care system; workshops on reproductive rights, gay health and parenting; supportive youth and women's empowerment programs; and job training.
5. Drug Policy
Fund enough drug-addiction treatment centers so that no one is ever turned away again. These would include residential facilities for families and alternative drug
Eliminate contact-tracing and names-reporting laws in all states, and mandate a blinded seroprevalence system—this protects anonymity better than unique identifiers—for collecting AIDS data. Let's get every American tested by 2001.
2. Civil Rights
Amend the Religious Liberty Protection Act to safeguard local civil rights for HIVers, gay people, women and racial and ethnic minorities.
Let's kick off a massive “No More Stigma” campaign to empower people with HIV to come out and to take part in prevention and treatment projects. Why not a National Coming Out Day? An HIV Positive Anti-Shame March? Pride of place will go to drug addicts and all who have been stigmatized during the AIDS epidemic.
2. Bill of Rights
Amend the U.S. Constitution—as well as pass laws in every other country—to extend civil rights protections to people with HIV or any other stigmatized illness.
1. Global Think Tank
Let's establish a regular and independent summit of AIDS thought leaders from around the world to suggest sensible ways to apportion money and to plan global research, prevention and treatment strategies.
2. Judgment Call
Fill every seat on the federal bench with a judge who supports civil rights laws. Get an international court to try Reagan, Helms and other official AIDSphobes for their crimes against humanity.
3. Electoral Strategy
Cure voter apathy along with AIDS! Let's organize an alternative political party to recruit, train and elect new leaders, with the goal of unseating elected officials in both major parties who consistently block HIV prevention, education, needle exchange, drug price control, national health care and legal protections for people with HIV.
We've got some expert advice for the usual--and not so usual--suspects in the world of AIDS. Take it to heart--you all have one.
The Art World
Every gallerist, artist and museum professional should actively support AIDS awareness, at least by participating in A Day Without Art.
Local School Administrators
Create an atmosphere for honest discussion of sex, and help foster an understanding of relationships, sexual rights and personal responsibility.
Commit yourself to finding all the resources necessary to fight AIDS instead of thinkng incrementaly about AIDS funding.
Former Surgeon General C. Everett Koop took the bull by the horns by defying the president and alerting the American public about HIV. Now it's your turn. Show the courage to publicly address the disparities in health care access in the United States--especially as they affect people of color.
Listen to the message: HIV is not over. There is no cure for HIV. Safer sex does make a difference.
Kofi Annan, Secretary General of the United Nations
Make AIDS an international priority.
Stop diddling around and make that long-talked-about movie of Larry Kramer's The Normal Heart already. It's still a whopper.
Always disclose your status.
Get involved with an HIV prevention ad campaign.
You have to put your profits, your obscene personal compensation packages, ahead of dying, suffering millions worldwide. It's time to give over your ill-gotten gains to fund the development of health care infrastructure around the world.
Go to hell in a handbasket. May you spend the rest of your days mopping up diarrhea in an AIDS hospital in Zimbabwe.
Panic-inspired journalists predicting bigger and badder AIDS in the future for U.S. gay men should get outside their crisis mentality.
Make needle exchange free, legal and widely available.
You have the force to change minds and open eyes. How about a lot more shows promoting AIDS awareness?
Start making the connection between what happens here and what happens in the rest of the world. Stop thinking that you are not at risk for HIV, and stop thinking of HIV infection in moral frames.
You've made movies about every kind of holocaust...except AIDS.
You must not retreat on AIDS. Look to the leadership of Yoweri Museveni, president of Uganda, who set an example very early in the epidemic of how a resource-limited country can invest in its people by attending to their health care needs.
Show us what compassionate conservatism really means by supporting progressive AIDS policies in your campaign.
Fund prevention efforts in black communities that are appropriate for the audience.
Put an AIDS education leaflet into every Microsoft product sold urging increased AIDS awareness--and include a donation envelope for giving to AIDS organizations.
Make AIDS a priority and integrate it into all denominational levels.
I'd pass legislation saying that everyone who lifts a weight at a gym must also lift up a hand to write a check to fight AIDS; for every bump of a drug done at a circuit party, the user must help PWA get a prescription filled; and everyone who has unsafe sex must spend the next day as a volunteer, emptying bedpans at the local hospital. Let's take to the streets again with the passion of the early days.
Tell the truth to your followers about condom use as an effective weapon in preventing HIV, especially in countries where the anticondom message is gospel.