AIDS TREATMENT NEWS Issue #391, May 30, 2003
John S. James

People with HIV in the U.S. face a growing emergency as Federal policy starves human services during an economic downturn, and essential medical care becomes less available to most people who need it. Since almost no one can afford antiretroviral treatment entirely out of pocket, and private insurance has found ways of avoiding or dumping patients who become seriously ill, public programs have become a last resort. Now these programs are under the worst financial threat ever. People are already being denied treatment for AIDS and other diseases who until recently could have obtained it, and the crisis will get worse. Communities must think carefully about what they can do to protect themselves. Some facts are clear:

• Private charity can never pay for most peoples' medications at $10,000 or more per person per year, in addition to other medical care and expenses of patients unable to work full time.

• But private funding is crucial for medical information to help people take care of themselves, and for advocacy toward workable policies so that people can receive the medical care they need. The goal is not necessarily to get government to pay, but to bring public and private institutions together for responsible solutions to the growing lack of healthcare access in this country. Government funds usually cannot be used for advocacy, so without private support it will not be done.

• Pharmaceutical company funding of community organizations has made possible important work. But it would be a serious mistake to become entirely dependent on an industry that shares some community goals (such as getting public programs to pay for medicines), but must focus first and last on sales and profits.

• In the U.S., individuals give much more money to charitable organizations (mostly to religious groups) than foundations and corporations put together.

A major problem in fundraising is that most potential donors are too busy to be personally involved in the work being funded, and therefore are not very familiar with what is really going on. So organizations reach donors emotionally, or by providing networking opportunities for them. This is necessary and useful. But it can reward organizations more for good fundraising than for good service work.

We need activism that can bridge the communication gap between those doing important advocacy or service and those who can fund it. These activists need to know both groups and be credible in both, to be a kind of ambassador between them. They may need special talent, background, or training.

So far only a handful have been doing this work, as the AIDS community has not made it a priority. The community must recognize the importance of this role and provide encouragement, models, training, and other support. Then organizations doing important work can survive hard times.

If we do not have significant funding independent of government and corporations, we will lose control of our future to forces that have always been hostile to people with AIDS.

Example: WORLD

WORLD (Women Organized to Respond to Life-Threatening Diseases), based in Oakland, California but working nationally and beyond, is one of many advocacy and service organizations that do good work and need community support for it.

WORLD, active for 12 years, has published 143 issues of its monthly newsletter "by, for, and about HIV+ women and their loved ones," currently reaching 12,000 people in 87 countries. It conducts two retreats each year for HIV-positive women, and also HIV University, a treatment school for women.

This year donations are down, and the newsletter had to be suspended until money can be found for printing and postage. The AIDS Walk usually funds the two retreats, but this year there was only enough money for one, and the other had to be cancelled. And funding has not yet been found for this year's HIV University.

Your donation to WORLD, or to another advocacy or service organization of your choice, would certainly help for the current emergency. In addition, the major long-range issue is that we need to get it together as a community to see that advocacy, information, and other services are funded. Despite the economy, many individuals still have enough money to be major donors -- though they may not have time to personally investigate what to give to and why. Perhaps some of our readers can help make these connections.

If you may be able to help WORLD, contact executive director Maura Riordan, mriordan@womenhiv.org or 510-986-0340. Or write to her at WORLD, 414 13th Street, 2nd floor, Oakland, CA 94612.

***

From "How Can You Help," in WORLD issue #143 (emphasis in original):

"Be an ambassador for WORLD. Contact potential funders and tell them what WORLD means to you. Or send their contact info to our fabulous new executive director Maura Riordan (mriordan@womenhiv.org), and we'll mail them an information packet, with a note telling them you sent us.

"Write a letter telling potential funders how WORLD has helped you or someone you love. Mail it to us, with permission to publish or share your letter. We're very cautious about confidentiality, so please provide a pseudonym if you don't want your real name used."

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