AIDS TREATMENT NEWS - November 23, 2004
John S. James

Summary: It is too early to know exactly how the recent elections will affect people with AIDS. But clearly the community will have to do more to improve and support advocacy for treatment and care, and for policies that work.

What does the November 2, 2004 U.S. election mean for AIDS? No one knows yet, until we see what happens with the second term of President Bush, and the more "conservative" Congress. Washington's response to AIDS has been largely bipartisan in some respects, and it is not clear how well this will continue. But clearly some facts will not change -- and clearly we must do better in some ways, especially in funding advocacy, regardless of what happens in Washington.

What will not change:

• AIDS will continue to affect very many people, including U.S. voters, and matter a lot to them. Hundreds of thousands of Americans have HIV or AIDS, and many millions are connected with someone who does, or with relatives or friends who have died. Globally, the epidemic will continue to be recognized as one of the world's most serious problems.


• Money and medical care will become increasingly hard to obtain in the U.S. and some other countries, for all but the rich and some of the well insured. One issue is the Medicare drug benefit scheduled to start in 2006; it will help some people but not others, at great public expense that could take money away from other medical programs. Legislation next year to change Medicare "Part D" for better or worse will have to be watched -- and in any case huge efforts will be needed to teach people how to use this system if they can. In addition, ADAP will continue to be a crisis needing attention and activism, or many more people will die because they cannot afford necessary drugs.

What we need to do better:

• Learn how to talk to people and generate discussion and action, online and off. Much of the success of the Bush get-out-the-vote effort was through email communication with and cultivation of thousands of local leaders who were willing to work in their communities (whether urban, suburban, rural, business or professional, online, or other communities). Anyone can send email, but most send it indiscriminately without regard to who their readers are or what they want, burdening them with information overload, and furthering the modern self-protective reflex to tune out everything in response to pervasive disinformation. We need to learn how to be more useful online, and to better integrate online and face-to-face social organizing.

"The fatal pedagogical error is to throw answers, like stones, at the heads of those who have not yet asked the question." Paul Tillich

• Fund effective advocacy. In U.S. philanthropy, individuals donate far more money than all foundations and corporations together (most of the individual giving is to churches). But most advocacy cannot be funded with tax-exempt contributions. So in addition to the tax-planning charity that happens mostly at the end of each year, people need to be willing to spend money on what works best, without regard to taxes. Those who do not have money to spare often know people who do, and may be able to tell them from personal experience about projects and programs that work.

Small donations could be as important as large ones, but need to be much easier to give. Behind the "donate" buttons on Web pages we have seen as many a four slow-loading pages of forms to be filled out in order to make a contribution. The "Amazon Honor System" provides a much easier way to fund Web sites with small, voluntary donations (not limited to nonprofits); sometimes a single click is enough to give money (the gift can be revoked for up to a week). This system is important for showing that people want to make small, very easy contributions to help support good work; however it is limited and expensive. I am developing an easy-payment system for writers, artists and nonprofits, which could be far more flexible and less costly; for more information see http://www.MicropaymentSmartCodes.com.

A major problem with fundraising is the huge amount of work done to get people to give. Organizations learn to specialize in jumping through hoops (for many small donations or a few big ones), instead of accomplishing their mission. Many executive directors are chosen largely for their ability to raise money, not to involve people in other ways, or otherwise further the goals for which the organization nominally exists. The fundamental way to solve this problem is to establish community norms that encourage potential donors to pay attention and connect with people, inform themselves through social networks, think through what they want to do, and do it.

"Political work must become, like taking our meds, a daily part of our lives -- not every four years on Election Day, nor even at the occasional demo or ASO meeting." Sean Strub, founder, POZ Magazine, S.O.S. column, January 2005.

People with AIDS had a survival problem before the election, and would have one now no matter who was elected. Hopefully it will not get much worse. We cannot control what will happen in the world, but we can maintain hope and give a good account of ourselves.

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Copyright © 2004 - by John S. James. See "Permission to Copy" at: http://www.aidsnews.org/canhelp. How to help AIDS Treatment News: http://www.aidsnews.org/canhelp.

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