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About Just out. (Portland, OR) 1983-2013 | View Entire Issue (Nov. 1, 2002)
_ _ _ _ _ _ _ november 1.2002 • | n t « Ë | ^ TTirTnTMTTineivs O G rassroot G oals regon is home to 5,200 people with HIV/AIDS, many of whom can not afford the extremely expensive medications that can increase the quality of and prolong their lives. Coalition pushes for AIDS drug assistance by Caitiin Smith The federal government, through the AIDS Drug Assistance Program, provides financial help to states to give low-income people better access to these medications. In Oregon, this money is disbursed by the state-run program CAREAssist. CAREAssist now is being challenged by a budget shortfall, as the funds formerly provided by A DA P have been cut. In order to stay afloat, the state program has proposed expelling 300 clients, potentially leaving 300 people suddenly without access to their medications. But those affected by the shortfall might have another option— to be rescued by a new organization called the A ID S Service Access and Accountability Coalition. Headed by facili tating director Steve Carroll, it aims to provide financial help to people with HIV who can’t afford their medications, including current and former clients of CAREAssist. The grassrixtts organization was formed in response to the deplorable ways in which CAREAssist proposed to manage its financial troubles. The consequences of cutting someone with HIV/AIDS off from access to medications Fred Schaich (left) and Steve Carroll recently returned from Washington, D .C ., where they are severe. “Obviously, this was an appalling and lobbied for H IV /A ID S funding unprecedented concept,” says Carroll, noting that never before had a state A D A P suggested Beginning in January 2003, CAREAssist can do this much more effectively than can removing people from an active program. plans to require clients to pay a monthly fee. But CAREAssist. But a group of concerned citizens wouldn’t making this payment is difficult for people in the The coalition “consists, at this time, of peo stand for this. “The result was a gathering of indi program. As Carroll comments, “It is not hard ple living with HIV/AIDS helping others of our viduals to discuss and confront the absurd ideas to imagine people living at 100 percent to 325 community living with HIV/AIDS,” Carroll coming out of these offices,” Carroll says. The percent of the federal poverty level as having a says. “We have an entirely different network to emerging organization saw its mission as twofold: couple of had months financially, hut that reach people because we are those people.” to demand accountability from the state and to shouldn’t mean they should he denied drug Carroll also stresses that, despite his intense provide access to medications for those in need, treatment for AID S.” involvement in the coalition, helping people especially those cut off from CAREAssist funding. Secondly, the coalition plans to help people live with HIV/AIDS is a community effort: “ It is Toward its first goal, the coalition began on the CAREAssist waiting list until a space essential for everyone to understand that this is investigating information disclosed by the state opens for them. A total of 23 people are on the a coalition of individuals and service-related relating to A D A P funding. However, it has waiting list, with more applications under organizations. We depend on each other to been hampered by the dearth of statistics review. make the decisions, and we pass information released by CAREAssist. Lastly, the coalition wants to offer assistance freely among our group to all and any who want “The state, by holding hack critical informa without rigid income restrictions, by assessing to be involved. We like to approach our position tion, has hindered the collective ability of this each individual application for need. C A R E in the community as one that hears and acts community to mitigate circumstances,” Carroll Assist only provides aid for people who earn less upon the suggestion of our community." says. “This has created a dangerous and life- than 325 percent of the federal poverty level The spirit of the coalition is in contrast to threatening situation for HIV/AIDS patients.” ($28,795 a year), and new clients can make no the experience of its members with the Oregon Toward its second goal, the coalition more than 200 percent. This is a severe restric Health Division, which is guilty of “concealing designed a medication aid program and has tion, considering AIDS drug treatments can information and/or misdirecting (CAREAssist] applied to various foundations for funding. cost up to $20,000 a year. until a crisis occurs,” another coalition member However, Carroll says, “We are still waiting for According to the coalition, one of the main says. “It is an uphill struggle trying to enter into approval and the grants funds necessary to flaws of CAREAssist is that it didn’t communi credible relationships with an agency whose implement our financial assistance plan.” cate well with the HIV/AIDS community. Car- leadership is committed to obstructionist posi The proposed aid plan has three major parts. roll stresses the importance of reaching out to tions or even just having underlying reluctance Firstly, the coalition plans to provide supple people in need who might not know where they to engage in open conversation.” can go for help. He thinks coalition volunteers mental assistance to CAREAssist clients. When asked about the coalition’s criticism that CAREAssist is poorly run, a representative of spokeswoman Bonnie Widerburg simply said that changes were being made to allow the pro gram to operate for the rest of the grant year. Furthermore, it “is continuing to meet with our advisory committee to review the implementa tion process and to develop strategies to address issues [that] will arise if adequate funding is not obtained for the next grant year.” The Department of Human Services points out that the costs of HIV treatment and health insurance have grown significantly, while feder al funding has not. “In addition,” state epidemi ologist Mel Kohn said in a recent press release, “Oregon’s program has had a dramatic increase in enrollment, created by the state’s economic downturn and loss of jobs." Working with Carroll at the coalition is Fred Schaich, founder of the International Founda tion for Alternative Research in AIDS, a Flori da-based organization with a strong presence in Oregon that aims to “foster new paradigms and integrative treatment concepts and conduct comprehensive treatment education programs in HIV/AIDS.” The two men recently returned from Washington, D.C., where they joined about 30 people from other states, members of the AIDS Treatment Activist Coalition, lobby ing for an additional $162 million in funding for people with HIV/AIDS. Securing more funding is especially challeng ing now, Schaich notes, because “with the ‘war mentality’ and consequential ‘flat funding men tality’ circulating...it will be most difficult to expect Congress to appropriate any or all of the $162 million needed to save ADAP.” Like Carroll, Schaich says that as long as he is well, he puts most of his time into activism and HIV/AIDS treatment education. “I am a sur vivor. I survive and thrive because I participate in my health care.... I’m not lucky for having survived AIDS since 1980,1 just work hard at it.” The time and energy Schaich puts into the foundation and the coalition come from first hand knowledge of what it’s like to live with HIV/AIDS. “I respect and admire anyone who has developed the coping skills to live with this lifelong disease, its stigmas, opportunistic infec- tions/diseases and treatments.” But Schaich vehemently encourages people to take control of their own health care. “Why don’t others become at least interested in what it is that may save their lives? I just take it a step further and like to help others with treatment options and concepts that I find useful. “Remember,” Schaich adds, "it’s not easy to live with HIV/AIDS, but it is possible!” J H For more information contact the AIDS SERVICE A ccess and A ccountability C oalition at 503-288-6582 or asaac@atthi.com. egon Camera Everything Photographic Inc. 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