aids activist bob bowers - Act up wisconsin - mADISON, WI

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ACT UP is a diverse, non-partisan group of individuals united in anger

and committed to direct action to end the AIDS crisis.

 We advise and inform.  We demonstrate.

 WE ARE NOT SILENT

by Bill Lueders May 21, 2009 2:00 PM

For more than a year, Greg Milward of Madison has spoken out against AIDS Network. Now he and others have gone to the next level; they've decided to ACT UP.

"AIDS and HIV is a silent epidemic right now," says Milward, a former board member of AIDS Network, a Madison-based nonprofit that serves a 13-county region. "We have to start taking our role seriously."

The activists believe that AIDS Network has failed its clientele, and that state authorities have failed to provide effective oversight. And so, early this month, they formed the first-ever Madison-based chapter of ACT UP, a national activist group known for its militant stands.

"This has been long coming," says Bob Bowers, one of the founders of the new group, ACT UP Wisconsin.

The voice of the HIV/AIDS community has been silenced long enough."

Karen Dotson, executive director of AIDS Network, pegs the ACT UP chapter as a handful of embittered dissidents. "We do a really good job for our clients," she insists. "We have been providing great services here."

The state Department of Health Services, prodded by Milward (PDF), has documented significant problems with AIDS Network, but also noted signs of improvement. Milward, recently elected as community co-chair of the state's planning group for AIDS/HIV programs, argues that the problems found should have prompted immediate defunding.

Looming in the background is the AIDS Resource Center of Wisconsin (ARCW), the state's main provider of services to people with HIV and AIDS. (HIV is the virus that causes AIDS, a disease that attacks the immune system.)

Critics of AIDS Network say ARCW, based in Milwaukee, does a much better job. Dotson, a former ARCW employee, sees Milward and others as warriors in a "turf war" that aims to install ARCW as the state's sole service provider - something that group, she says, has "always wanted."

Milward, 52, a Madison native who's worked around the country as a CEO at various nonprofits, has had AIDS for more than a decade. He served on the AIDS Network board of directors from March 2007 to last May, when he resigned in protest.

"Fundamental mismanagement of AIDS Network has negatively impacted the delivery of services to [its] clients...and the larger HIV/AIDS community," he wrote in his letter of resignation (PDF), also citing "a level of organizational dysfunction that is totally unacceptable." (For the letter and other documents, see the related documents at top right or

Last August, the state found that only 12% of AIDS Network's clients had an annual reassessment, required for all. It directed the group to increase this to 90%, which it appears to have done.

The state also found that AIDS Network was improperly reimbursing health-care providers at their billed rates, not the lower Medicaid rates, as required. Milward bristles that the state didn't seek reimbursement for the extra costs.

Dotson admits AIDS Network has had "some challenges," which it's been working to address. But she says the group is "coming out with flying colors" in its most recent audit (by a hired auditor, not the state).

The new ACT UP chapter's biggest concern is the perceived disparity (PDF) in services between AIDS Network and ARCW. The critics say ARCW has embraced a direct-service model that provides a greater range of services at a lower cost, while AIDS Network has remained mired in an old "psychosocial" case-management model.

In Green Bay, for instance, ARCW operates a food pantry and dental clinic, and provides mental health and substance abuse treatment. In Madison, clients are referred to service providers in the community.

"We see services that exist in other parts of the state that don't exist in the south-central region," says Ray Durr, another former AIDS Network board member involved in forming ACT UP Wisconsin. The Dodge County resident wants clients of AIDS Network to "get the services provided to the rest of the state."

AIDS Network has a current annual budget of $1.8 million, and last year had 425 clients; it also provides legal service and prevention programs.

ARCW, with a $12 million budget, serves the 59 Wisconsin counties not covered by AIDS Network. It has nine offices around the state (including in Madison, where it runs housing and needle-exchange programs).

Doug Nelson, executive director of ARCW, praises the overall efficiency of the state service system and offers no direct criticism of AIDS Network. But he notes that his group has evolved as conditions have changed. Today, it provides an integrated network of direct services, from food pantries to dental, health and mental health clinics.

"In this arc of the AIDS epidemic, access to health care is everything," says Nelson. "Our focus has turned enormously to that mission." As a result, "We have a high level of patient and client satisfaction."

Dotson disputes any sharp contrast between her group and ARCW. Both, she notes, refer clients to outside providers in some circumstances. And while AIDS Network doesn't need to duplicate services readily available in Madison, it is now working to provide dental care and open a Madison food pantry for its clients.

In other words, AIDS Network appears to be moving toward the direct services model, ACT UP or no.

There is more behind the formation of ACT UP Wisconsin than dissatisfaction. Attests Milward, "The ACT UP chapter cannot survive if the only issue is AIDS Network."

And Heidi Nass, a patient advocate for the UW Health HIV/AIDS Comprehensive Care program, which attends to the medical needs of about 800 people with HIV/AIDS, many of them clients of AIDS Network, calls the new group "exciting."

For years, she says, the maxim of AIDS activism, as embraced by ACT UP, was "Silence Equals Death." The new maxim, reflecting the advances that have been made, is "Action Equals Life."

Nass, who has HIV and serves on a national panel that sets treatment guidelines, believes people with AIDS and HIV need a larger role in the groups that serve them. "The community," she says, "is the expert on the community."

Dotson doesn't disagree. "I welcome the viewpoints of people living with HIV and AIDS," she says, mentioning the four client focus groups AIDS Network held in February and March. But she feels Milward is on a mission to "undermine" AIDS Network, and challenges ACT UP Wisconsin to take an equally hard look at ARCW.

"There's certainly things in Milwaukee that ARCW could probably do better," she says, mentioning outreach to African Americans. "Everybody can do something better."

In October 1982, the four founders of AIDS Project Los Angeles (APLA)—Nancy Cole Sawaya, Matt Redman, Ervin Munro, and Max Drew—attended an emergency meeting at the Los Angeles Gay and Lesbian Community Services Center. The meeting featured a presentation by a representative from San Francisco’s Kaposi’s Sarcoma Foundation about Gay Related Immunodeficiency Disease (GRID), one of the early names for AIDS.

I just wanted to tell you that your site brought both tears to my eyes, chills to my skin, and peace to my heart. I have not been directly affected by AIDS on a personal level, however, being a nurse, my final goal is to be involved in the fight for research and a cure. I never look at people's websites, but something told me to check yours out. I have been directly affected by cancer several times which is another type of research I'd like to do, but I feel like the Lord is pushing me to work with HIV/AIDS patients and I'm not really sure why. And I love your saying Compassion is our cure.... b/c it is the truth in this world through and through. I just really wanted to say I think it's awesome what you are doing, and I wish more people would be on the proactive side of this fight.    

~ Erin 

If I'm dying from anything -- I'm dying from the fact that not enough rich, white, heterosexual men have gotten AIDS for anybody to give a shit. You know, living with AIDS in this country is like living in the twilight zone. Living with AIDS is like living through a war which is happening only for those people who happen to be in the trenches. Every time a shell explodes, you look around and you discover that you've lost more of your friends, but nobody else notices. It isn't happening to them. They're walking the streets as though we weren't living through some sort of nightmare. And only you can hear the screams of the people who are dying and their cries for help. No one else seems to be noticing.

ACT UP, or the AIDS Coalition to Unleash Power, was a radical, grassroots political organization founded in 1987 to end the AIDS pandemic through direct action, civil disobedience, and advocacy. Co-founded by playwright Larry Kramer, ACT UP successfully accelerated the FDA drug approval process, lowered drug prices, increased patient involvement in treatment design, and fought discrimination and misinformation surrounding HIV/AIDS. The group's "Silence = Death" campaign and innovative, confrontational strategies significantly shifted public perception and policy regarding the AIDS crisis, saving countless lives.