From alaura@u.washington.edu Wed Aug 13 13:39:47 1997 Received: from jason04.u.washington.edu (root@jason04.u.washington.edu [140.142.78.5]) by lists.u.washington.edu (8.8.4+UW97.07/8.8.4+UW97.05) with ESMTP id NAA48974 for ; Wed, 13 Aug 1997 13:39:46 -0700 Received: from homer27.u.washington.edu (alaura@homer27.u.washington.edu [140.142.77.7]) by jason04.u.washington.edu (8.8.4+UW97.07/8.8.4+UW97.05) with ESMTP id NAA26216 for ; Wed, 13 Aug 1997 13:39:45 -0700 Received: from localhost (alaura@localhost) by homer27.u.washington.edu (8.8.4+UW97.07/8.8.4+UW97.04) with SMTP id NAA32948 for ; Wed, 13 Aug 1997 13:39:44 -0700 Date: Wed, 13 Aug 1997 13:39:44 -0700 (PDT) From: Suzanne Klinger To: uwtpride@u.washington.edu Subject: GLUE: IOM panel on lesbian health issues (fwd) Message-ID: MIME-Version: 1.0 Content-Type: TEXT/PLAIN; charset=US-ASCII FYI, folks. Suzanne ---------- Forwarded message ---------- Date: Wed, 13 Aug 1997 09:21:59 -0700 (PDT) From: "J. Marrazzo" To: Multiple recipients of list Subject: GLUE: IOM panel on lesbian health issues FYI. *************************************************************************** Jeanne Marrazzo, MD, MPH phone (206)720-4370 jmm2@u.washington.edu University of Washington, Box 359928 fax (206)720-4371 Division of Allergy and Infectious Diseases WASHINGTON BLADE August 8, 1997 http://www.washblade.com/ NIH commissions panel on Lesbian health priorities by Wendy Johnson ATLANTA - The National Institutes of Health and the U.S. Centers for Disease Control and Prevention have commissioned a scientific panel to study Lesbian health issues and to suggest research methods for scientists who want to study specific Lesbian health issues. The Lesbian Health Research Priorities project is unprecedented in its focus, marking the first time that a U.S. government agency has commissioned an examination into Lesbian health issues and research methodologies. "This is one of the most exciting things to ever happen in the Lesbian health care movement," said Lesbian health activist Marj Plumb when she announced the project during a Lesbian research plenary session at the National Lesbian and Gay Health Association's annual health conference on July 29 in Atlanta. "It's going to take the Lesbian health agenda into the next millennium." Kathleen Stine, a Lesbian health researcher at the University of Washington in Seattle, echoed Plumb's enthusiasm. "It validates what we have been saying all along: that we should be included and that we are a viable group for research study," she said. "Coming from NIH, whether we like it or not, that's a powerful voice in the research community. It will help all of us." Budgeted at $257,540, the project is an historic move that is expected to shed light on the vastly uncharted territory of Lesbian health. Federal funds have been allocated in the past for Lesbian health research projects, but such funds have never been designated to study the "whys and hows" of Lesbian research, said Plumb, policy director at the Gay and Lesbian Medical Association. "The most significant piece of this is not the money but the fact that the project will have greater impact in the research arena," she said. "A federally funded study that reports why and how to do Lesbian health research means that we will have hundreds and hundreds of research projects on women in our community." Lesbian health researchers have had a difficult time convincing other women's health researchers to include questions about sexual orientation and sexual history on their own studies, largely because no reason to do so has been scientifically documented. Some existing Lesbian health studies do indicate that Lesbians are at a significantly higher risk for gynecological and breast cancers than heterosexual women, although the findings have failed to convince other researchers and federal health officials, who say they are based on either biased or insignificant sample sizes. Lesbian health researchers have been working for years to develop ways to remedy this problem, but their enthusiasm has been slow to catch on among other women's health researchers. Four years ago, Lesbian health activists waged a tough battle with the NIH to make sure the agency included questions about sexual orientation on its historic Women's Health Initiative. At the time, the director of the women's health study, Dr. William Harlan, had said that such questions were unnecessary. Sexual orientation, he argued, is not "a salient characteristic that sets apart individuals with respect to risk." But after an intense lobbying and letter-writing campaign by Lesbian health activists, Harlan and other NIH officials agreed to include Lesbian-specific questions when they launched the study in 1994. The victory was a major one for Lesbian health activists, since the 14-year, $625 million study was among the largest research projects ever launched by the NIH. It also crystallized for Lesbian health activists the need for a report or statement from official sources that research into Lesbian health is, in fact, necessary. "We haven't had enough info to be able to talk with a great deal of authority on issues that are important to Lesbian health," said Stine. "That's why this study is so important." Some government agencies have since funded Lesbian-focused research projects, including pilot studies on breast and cervical cancer among Lesbians, and more recently a study by Stine and Dr. Jeanne Marrazzo that focuses on sexually transmitted diseases among women who have sex with women. But federal funds are consistently hard to come by. "It's a catch-22," said Stine. "Researchers want to have concrete information [before they'll support a research project], but it's difficult to get that kind of information unless someone is willing to support your work." The Lesbian Health Research Priorities project itself is being undertaken by a nine-member scientific panel at the Institute of Medicine, a division of the private, nonprofit National Academy of Sciences that conducts policy studies on health issues. The panel's goal is to suggest methods that researchers can use to identify and quantify Lesbians in any research sample, and to suggest areas of Lesbian health that need further examination, said Dr. Andrea Solarz, the IOM staff officer heading up the study. The women's health research offices at the NIH and CDC commissioned the Institute of Medicine late last year to do the project, but news of the project was not announced until the NLGHA health conference last week. One person closely associated with the project said it was "kept low key" until the funding for it had been secured. Speaking on condition of on anonymity, the source explained that "some people on Capitol Hill are going to have particular concerns about using money on Lesbian research. Our biggest concern was, how do we handle this? Nobody wants to hide what we are doing, but the political reality is that we're using appropriated funds. But the Lesbian community certainly has the right to appropriated funds." Bruce Alberts, president of the National Academy of Sciences, appointed the IOM panel earlier this summer. Each panel member was chosen according to his or her expertise in various scientific areas as they pertain to women's health or "stigmatized populations," said Solarz. "We went way beyond what we might typically do in looking for possible names," she said. "This is an area where we haven't had a particular focus in the past, so we drew on the expertise of the [Lesbian] community. We strive to have our committees balanced." Panel members include: Dr. Ann W. Burgess, panel chair, from the University of Pennsylvania, who is considered an expert in sexual assault and family violence issues; Dr. Judy Bradford of Virginia Commonwealth University in Richmond, an expert on survey research methods and co-author of a landmark national survey on Lesbian health issues in the mid-'80s; Dr. Donna Jean Brogan of the Rollins School of Public Health at Emory University in Atlanta, who has expertise in the areas of sample survey theory and applications, and serves on a board for the Gay and Lesbian Medical Association that distributes money for Lesbian health research; Dr. Samuel R. Friedman of the National Development and Research Institute Inc. in New York City, a sociologist with expertise on drug-using populations, particularly women drug users who have sex with women; Dr. Cynthia A. Gomez of the University of California-San Francisco, who is considered an expert on health prevention issues within the Latino community and has studied health risks associated with women who have sex with women; Dr. Iris F. Litt of Stanford University School of Medicine, who is considered an expert in adolescent medicine and eating disorders; Dr. Bruce S. McEwen of Rockefeller University in New York City, who is considered an expert on hormone development; Dr. Larry Norton of Memorial Sloan-Kettering Cancer Center in New York City, a breast cancer specialist; and Dr. Gloria E. Sarto of the University of New Mexico School of Medicine in Albuquerque, who has experience in obstetrics and gynecology. The panel held its first series of meetings July 24 and 25, said Solarz. Additional meetings will take place in early October, when a selected number of Lesbian health researchers are expected to brief the panel members on the difficulties they face when conducting Lesbian health research. The meetings will be open to the public, although only the selected researchers will be able to address the panel, said Solarz. The panel will hold its final meeting in November, when it will finalize its recommendations before submitting them to an IOM review board. Finally, the panel will present a final draft of its findings in a published report early next year, said Solarz. The report will include a review of Lesbian health research literature, a discussion of the methodological issues involved in conducting research on Lesbian health issues, and suggested areas for future research projects. Rooting out the issues The roots of the Lesbian Health Research Priorities project trace back to 1993, when Lesbian health activists from across the country established the modern-day "Lesbian health agenda." One goal on that agenda was to urge federal health officials to include questions about respondents' sexual orientation and behavior on all research. Lesbian health advocates began lobbying their agenda heavily the following year, when they met with officials from the U.S. Department of Health and Human Services in October 1994 to urge them to include Lesbians in all women's health research studies. The lobby efforts showed early success when the National Institutes of Health announced just one week later in 1994 that it would include questions about women's sexual partners on the 10-year, $625 million women's health study. But the success has failed to continue steadily, and other researchers are still afraid to include the "L-question" on their women's health research projects. "This is true for two reasons," said Plumb. "There's still a fear of offending the heterosexual women who take part in studies, and a lack of knowledge about the important differences between Lesbians and heterosexual women." Stine said she recently experienced these "reasons" firsthand when she fought tooth and nail to convince officials at NIH's National Cancer Institute to include questions about women's sexual partners in a cervical disease management study. Although Stine was ultimately successful, she said at least one researcher connected to the study had argued that sexual orientation questions would "offend good Christian women," while another researcher said the need for such questions hadn't been clearly documented in other studies. "In this instance, something like the IOM study could have given me more leverage," she said. "It will be a real useful tool for advocates to lean on." Dr. Vivian Pinn, director of the NIH's Office of Women's Health Research, said her office contracted with the Institute of Medicine - a private organization known for its "nonpolitical, non-biased" work - with the hopes to avoid future arguments like the ones Stine came up against. "We wanted to approach this in a way so that [Lesbian health issues] would not be a political question, but one framed as a scientific inquiry into scientific research," she said. "We needed to resolve some basic issues, so we went to the least political [entity] there is in the scientific community." Some of those issues include questions such as: How does a researcher identify those Lesbians who are reluctant to come out in a scientific survey? Is a Lesbian simply a woman who only has sex with women? Is a woman who has sex with men and women considered a Lesbian if she identifies herself as such? Without the answers to these questions, Lesbian health researchers are unable to scientifically document the diverse health needs within the Lesbian community, and without such documentation, federal agencies are hesitant to fund Lesbian health research projects, said longtime Lesbian health researcher Caitlin Ryan. "This study will show once and for all what the gaps are and what the research needs are," said Ryan, who co-authored a groundbreaking Lesbian research study with IOM panel-member Judy Bradford in 1985. "Most importantly, it shows that the NIH understands that this population needs to be studied." Added Plumb: "It will open the eyes of researchers to the potential for investigating the Lesbian population for research. There will be mainstream researchers who will read this report and say, 'Oh, this is a great idea! I'll add sexual orientation questions to my study.'" ************************************************************************ This message has been forwarded as a free informational service. Please do not publish, or post in a public place on the Internet, copyrighted material without permission and attribution. Forwarding of this material should not necessarily be construed as an endorsement of the content. 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