advocac y leading lines by gjjur4356


									 Leadership Training Institute
                                 A Program of Cicatelli Associates, Inc.

                                                                           212 594 7741 fax 212 629 3321
                                                                           505 Eighth Avenue, Suite 1601

 People Living With AIDS/HIV

                                                                           New York, NY 10018

 Summer 2003, N° 10                                                                                                                                                                  leading lines advocacy outreach our history
leading lines

                           SURVIVING                                                                                                    IT STOPS WITH US!
                           & THRIVING                                                                                                   Editor’s note: Recently a committed group of advo-
                           by John Hatchett                                                                                             cates from the Albany area powerfully demonstrated
                           “Sisters are doin’                                                                                           Margaret Mead’s aphorism to “Never doubt that a
                           it for themselves,”                                                                                          small group of thoughtful, committed citizens can
                                                                                                                                        change the world. Indeed, it’s the only thing that
                           declared Annie
                                                                                                                                        ever has.” As LTI graduate Richard Hahn tells the
                           Lennox and Aretha
                                                                                                                                        LTI Circle, this small group of HIV-positive citizens
                           Franklin in a popular                                                                                        saw a need for education locally, generated an
                           song a few years back, and if there                                                                          idea, sought funding for it and made it happen,
                           were any doubt about that statement,                                                                         significantly impacting perceptions of AIDS and
                           one look at the AIDS community                                                                               the need for testing in their community.
                           would put it to rest. The pandemic’s                                                                         Several months ago a series of events occurred in
                           disproportionate and devastating                                                                             the Albany area that profoundly disturbed members
                           impact on women continues unabated                                                                           of the HIV community there. A local AIDS service
                           worldwide, and though faced with                                                                             organization, the Jim Perry House, which provides transitional housing for small
                           tremendous economic, political and                                                                           numbers of men of color living with HIV, was proceeding with plans for relocation.
                           social disadvantages, positive women                                                                         In two proposed sites, however, community opposition exploded. A conventional
                           are not only “doin’ it for themselves,”                                                                      NIMBY (Not In My Back Yard) response to public projects in residential areas was
                           they’re doing it for each other and                                                                          made uglier by ignorance and prejudice specifically aimed at PWHA (people with
                           for the rest of us as well! From                                                                             HIV/AIDS). One resident was quoted at a town meeting as saying, “if any of those
                                                                                                                                        people so much as spit on my lawn, I’ll sue them for attempted murder.”
                           local neighborhoods to the halls of
                           government, women are increasingly                                                                           Many community advocates would have been appalled and enraged by such blatant
                           visible leaders in everything from                                                                           intolerance and discrimination, but a small band of activists in the Albany area
                           prevention education and service                                                                                                                                                                   (continued on page 8)
                           delivery to community organizing
                           and political advocacy. In this issue
                                                                                                                                          LTI Community                Anita Paige                      NYC HHS Planning Council Staff
                           of The Circle we highlight just a few                                                                          Advisory Board               Jack Patterson                   Christopher Miller, Acting
                           of the ways HIV+ women are assert-                                                                             Julian Bain                  Jairo Pedraza
                           ing leadership to respond to the                                                                               Judy Deane Barton            David Singh                      Program Staff
                                                                                                                                          Ruben Bonilla                Usungu Utshudi                   John Hatchett
                           challenges of AIDS, including two                                                                              Zoraida Gavilanes            Michael Wade                     Director
                           organizations founded and run by                                                                               Pamela Goodrich              Joan Warner                      Enrique Andino
                           and for women living with HIV:                                                                                 Kevin Huang-Cruz             John Wikiera                     Petra Berrios
                                                                                                                                          Karen D. Johnson                                              Rusty Chambliss
                           Catch a Rising Star (by Vanessa                                                                                Gabrielle Linton             AIDS Institute Staff             Keran Deli
                           Johnson of Albany) and SMART                                                                                   Michelle Lopez               Daniel E. Tietz                  Christopher Murray
                           University (by Susan Rodriguez                                                                                 Kim Nichols                  Sallie Perryman                  Trainers/Counselors
                           and Petra Berrios of New York City).                                                                           This edition of The Circle edited by Christopher Murray and produced by Eye to Eye Graphics. The PWA LTI
                                                                                                                                          is a program of Cicatelli Associates, Inc., supported by a unique collaboration between the New York City
                           Both stories have at their core                                                                                Department of Health and the New York State Department of Health, AIDS Institute.
                           dynamic positive women working                                                                                 This newsletter was supported by Grants Nos. 2 H89 HA 00015 11 and 2 X07 HA 00025 11 from the U.S.
                                                                                                                                          Health Resources Services Administration (HRSA). These grants are funded through Title I and Title II of
                           in creative ways to help other                                                                                 the Ryan White Comprehensive AIDS Resources Emergency Act of 1990, as amended by the Ryan White
                                                                                                                                          CARE Act Amendments of 1996 & 2000 through the New York State Department of Health, AIDS Institute.
                                                                                                                                          Its contents are solely the responsibility of Cicatelli Associates Inc. and do not necessarily represent the
                                                                                                           (continued on page 3)          office views of the funders.
       The LTI Circle recently asked several LTI graduates what it is like to be women advocates living with HIV.

     Yolanda Diaz                                 year and that hurt. But I remember            turely or dying a slow painful death
     Dean of Students                             what we used to talk about and that           alone. I was reached so I know some-
     SMART University, New York, NY               strengthens me. I know whatever, I do I       one or something can reach them too.
     I like to empower women of color that        do because I want to. That makes me feel      We have to keep trying. And try I do
     have just been diagnosed. Becoming an        good. I’m learning to take care of myself.    because ever now and then someone
     advocate made me feel so much                                                              really gets it and my spirit is lifted and
     stronger. Sometimes it’s hard waking                                                       it keeps me on this path another day.
                                                  Denise Goodman
     up in the morning but after I’m up and       Community Relations Coordinator
     outside I’m great. The end of the day        Project Achieve, New York, NY                 Anita Paige-Bowmen
     the best part of the day when I can look                                                   Case Manager
     back and realize that I met someone          For me it’s a classic case of a love/hate
                                                  relationship. I hate it because it would      St. Johns Riverside Hospital
     who just came out of detox and they                                                        (formerly Yonkers General)
     are becoming empowered. I get a ton          be better if there were no stigma or
                                                  oppression attached to HIV infection.         Hope Center, Yonkers, NY
     of energy from advocacy. I’m learning
     from other women all the time.               Why isn’t HIV thought of as other             Being a woman of color, there are
                                                  diseases that are medical concerns            definitely not enough of us out doing
                                                  deserving quality care and compassionate      advocacy. There are not enough women
     Denise Drayton                               social support? I hate the fact that 2+       period doing advocacy. We have so
     Director of Education and Prevention         decades later we’re (and me personally)       many issues with children and being
     Exponents, Inc., New York, NY                still fighting against labeling, separatism   often single heads of households. We
     I love advocacy. Boarding the bus to         by race, gender or sexual orientation,        often let our own health go by the
     Albany to do a legislative visit or shout    finger-pointing, ignorance and fear.          wayside or even down the drain! But
     for action at a rally is a rush. I’m espe-   I love it because advocacy liberates me       what energizes me is letting other
     cially pumped up when other HIV+             (and hopefully others) from that same         women with HIV know that they are
     advocates are already on board, there        stigma or oppression. I simply refuse         not alone and that there is so much
     is an air of excitement as we take off.      to buy into the assumption that there’s       to go on for! The most satisfying
     We know we are about to make a differ-       something wrong or damaged about              experience I have as an advocate is
     ence and there is that sense of unity.       people living with HIV. Living with the       the mentoring process: helping someone
     It’s my chance to hug those brothers         virus helps me remember that this is          through their own process, their own
     and sisters that I have met over the         about real people living real lives against   becoming of themselves and a stronger
     years and to know that they are still out    unreal odds. With that in mind, I gain        realization of where they fit into the
     there fighting for the cause. I get to see   strength from my efforts and the efforts      world as women living with HIV.
     leadership in action and I know that LTI     of my peers for our common cause.
     has made a positive mark on my people.
                                                                                                Joan Warner
     I feel blessed.
                                                  Vanessa Johnson                               Peer Educator
                                                  Associate Director for Program                Osbourne Association, Bronx, NY
     Deshell Fields                               and Resource Development                      I’m all about prevention. Whatever
     Peer Educator                                Capital District African American             group or demographic needs my efforts,
     Greater Buffalo Chapter of the               Coalition on AIDS (CDAACA),                   I’m there. It may be people over fifty,
     American Red Cross, Buffalo, NY              Albany, NY                                    maybe people of color. When I do HIV
     I don’t really look at being a positive      One of the reasons I am alive, strong,        advocacy, I feel like I look at other
     female advocate as being hard or easy.       and well enough today to tell about my        women and I see myself. For me, it’s all
     It’s what I have to do if I want to live.    own struggles and experiences with HIV        about being able to give back some of
     I have good days and bad, but I don’t        is that peers too many to be named            the things that were so richly given to
     look at them at all as being just HIV-       here have provided me with exemplary          me. I look around and I see other
     related. I think being diagnosed early       examples of courage, wisdom, and spir-        women advocating and being activists
     helped me to remain healthier, I’m lucky     it. In particular it was the women I met      and I’m happy to be a part of it.
     in that I haven’t had much trouble           in my first HIV support group for women       Of course, we need more women and
     adjusting to a medication regimen.           who made me realize that one, I still         people of all kinds to step up to the
     I think relationships matter a lot, and      had a lot to offer; two, I would not          plate. One of my main things is, where
     I just don’t mean romantic or dating         sell myself cheap; and three, I would         have all the advocates gone? I enjoy
     relationships, but the kind of support       not give into hopelessness. My quest to       advocacy. I like to be able to speak
     friends and loved ones give, knowing         be the best advocate I can be is born of      about the things we so desperately need
     someone’s in my corner. Working has          a desire not to die in silence and to let     as women, things have been put on the
     helped me, too. But mostly, I gain inspi-    people know that I too want to enjoy a        back burner for so long. Sometimes it’s
     ration from knowing in my heart that         whole and fruitful life. Too many women       fun, sometimes it’s not. It’s always
     I’m okay. I lost a really good friend this   living with HIV/AIDS are dying prema-         important.


                                                                                               leading lines
                                                                                                       POTLIGHT ON AFRICAN
                                                    CATCH A RISING STAR                                AMERICANS AND AIDS
                                                                                                       (continued from front)
                                                  Catch A Rising Star is a leadership devel-
                                             opment program for African American/Black                 women discover their own power—
                                       women living with HIV/AIDS in the Capital                       to live and live well with HIV, or in
                                  District. It is a community capacity building program                other words, to survive and thrive.
                             designed to encourage, support and increase the ability of                We are also extremely excited to
                            African American/Black women to participate in the HIV                     report that the LTI’s Core training
                            community planning and service delivery process as com-                    has now graduated over 1,000 people
                            munity leaders and advocates. The program is a joint effort
                                                                                                       living with HIV/AIDS! Most of these
                             between the Capital District African American Coalition on
                                                                                                       are, of course, in New York State, but
                               AIDS (CDAACA) and the Albany Medical Center Ryan
                                                                                                       several dozen also hail from other
                                 White Title IV Collaborative Project for Women,
                                                                                                       states around the country, and several
                                  Children, Youth and Families.
                                                                                                       of them have begun to develop their
      Women who participate in the Catch A Rising Star program attend four one day                     own leadership training initiatives
      training sessions, dealing with issues such as the impact of gender and sexuality                modeled after the LTI. One thousand
      on the development of leadership, how to share their life experiences via com-                   is a nice round number, (and one
      munity presentations, conducting community outreach, learning basic HIV/AIDS                     that seemed inconceivable just a few
      facts, the importance of participating in planning and advisory groups, and                      years ago!), and it seems like a fine
      forming a support network. After completing these training sessions, women are                   time to take stock of where we’ve
      encouraged to continue their development by attending Community Advisory                         been and where we need to be going,
      Board (CAB) meetings and LTI trainings.                                                          so the LTI is in the process of launch-
      For more information about Catch A Rising Star, please contact Vanessa Johnson,                  ing a comprehensive assessment of
      Associate Director for Program and Resource Development for the Capital District                 the training and capacity building
      African American Coalition on AIDS (CDAACA). Vanessa can be reached by phone                     needs of New Yorkers living with HIV.
      at 518-427-2957 or via e-mail at                                          It’s the first and largest survey of its
                                                                                                       kind that we know of, including plans
                                                                                                       to reach and learn from the widest
                                                                                                       possible range of PWHA around the
      SMART UNIVERSITY                                                                                 state. If all goes as planned, the
                                                                                                       results of this assessment will provide
      They have been on the cover of Poz magazine as activists, and they organize a sewing
                                                                                                       invaluable information, a community
      circle as well. The women of SMART University contain fabulous contradictions.
                                                                                                       snapshot, if you will, not only for the
      But one thing unites them, the goal of empowerment for HIV-positive women.
                                                                                                       LTI, but also for a wide range of com-
      SMART, which stands for Sisters Mobilized for AIDS/HIV Research and Treatment, was               munity groups to use as we strategize
      initiated in 1998 in recognition of the need for an organization devoted solely to the           to meet the challenges of the next
      empowerment of women with HIV disease, with a special focus on treatment educa-                  several years of this crisis. Come the
      tion. In fact, SMART University is the only organization run by and for HIV-positive             fall, we’ll be reaching out to literally
      women in New York State! Founded by Susan Rodriguez and Lorna Gottesman, SMART                   thousands of folks (in one way or
      University has grown with the help of its Program Director, LTI staffer Petra Berrios;           another), and of course, in order to
      from a small band of like-mined women into a stable organization with several staff              make this work, we’ll need your help!
      members and a range of programs including SMART Voices, a literacy/GED preparation               So watch this space for updates on
      program, and ongoing cycles of treatment education classes.                                      the assessment process.
      SMART University will be having its first annual Power Walk on Saturday,                         In the meanwhile, enjoy your summer!
      September 13, 2003 in Midtown Manhattan. The walk will end at St. Vartan’s Park
      on 35th Street and First Avenue with a women’s health fair and entertainment. For
      updates, registration or information on tabling, go to
      For more information about SMART University and their programs, please call
      917-593-8797 or email them at

our history

      1981 The first case of GRID, which                patients at George Washington University       vaginal intercourse with an HIV positive
      will later be referred to as AIDS, is             after receiving the Medal of Freedom from      man if they have healthy vaginas. The
      reported. Five women are among those              President Reagan. A reporter from the San      article also reports that “Most heterosexu-
      diagnosed. Sandra Ford, a drug technician         Francisco Chronicle publishes a front-page     als are not at risk” and further states that
      for the Centers for Disease Control (CDC),        story about Silvana Strangis, a prostitute     it is impossible to transmit HIV using the
      officially notes an increase in requests for      who is living with AIDS. For the first time,   “missionary position.” Women named
      pentamidine for the treatment of pneumo-          a woman is admitted to the AIDS ward at        fastest growing population with HIV.
      cystis carinii pneumonia (PCP). A paper           San Francisco General (Ward 5B). Frances       San Francisco AIDS Foundation develops a
      napkin will later be taped to Sandra’s door       Borchelt, an older adult from San Francisco,   Women’s Services Program. A 22 year old
      stating: “In this office in April 1981,           dies from AIDS after she received three        New Yorker, Alison Gertz, is diagnosed
      Sandra Ford discovered the epidemic that          pints of infected blood during surgery in      with AIDS. Alison’s mother Carol com-
      would later be known as Acquired Immune           1983. Her family files a negligence lawsuit    ments, “Alison had gotten sick that
      Deficiency Syndrome.”                             against Irwin Memorial Blood Bank.             summer, and they tested her for every-
                                                                                                       thing: lymphoma, Hodgkin’s, you name it.
      1982 Women are sick and dying,                    1986 Women represent 7% of U.S.                But they never tested her for AIDS
      falling through the cracks. Those women           AIDS cases. Marie St. Cyr, a Haitian-born
                                                                                                       because nobody thought a heterosexual
      diagnosed with this illness are classified        social worker, becomes the first director of
                                                                                                       woman who’s not a drug user would get it.
      under the risk category of “prostitutes.”         the New York based Women and AIDS
                                                                                                       We subsequently learned that she’d gotten
      An article in the Wall Street Journal states      Resource Network (WARN) after it is
                                                                                                       it from a good friend, who she’d only slept
      that male and female drug users are being         formed by several women living with and
                                                                                                       with once.” Dawn Averitt is diagnosed
      affected by GRID. Mary Richards                   affected by HIV. Silvana Strangis dies after
                                                                                                       with HIV. She later becomes a national
      Johnstone, a wealthy woman from the               battling cryptococcosis. Caitlin Ryan is
                                                                                                       AIDS treatment advocate and the founder
      affluent suburb of Belvedere, receives            hired to co-author the first book on AIDS
                                                                                                       of WISE (now Project WISE at Project
      twenty units of blood from Irwin Memorial         policy, AIDS: A Public Health Challenge.
                                                                                                       Inform). Elizabeth Glaser, Susan
      Blood Bank in San Francisco. She is later         This book is distributed to all members of
                                                                                                       DeLaurentis and Susan Zeeger co-found
      diagnosed with AIDS.                              Congress, governors, mayors, and key pub-
                                                                                                       the Pediatric AIDS Foundation after
                                                        lic officials and served as the basis for
      1983 Liz Smith is the first popular               many of the recommendations of the first
                                                                                                       learning that Elizabeth, her daughter
      columnist to write about AIDS. Barbara                                                           Ariel and son Jake are living with HIV.
                                                        Presidential Commission on AIDS.
      Fabian Baird, of the National Institute of
                                                        1987 13.5% of NIH money is dedicated           1989 Rebekka Armstrong, former
      Health (NIH), becomes one of the first                                                           Playboy Playmate, tests HIV+. NIH pub-
      nurses to conduct AIDS research. The            to women’s health issues. ACT-UP begins.
                                                                                                       lishes further guidelines on Women’s
      Women’s AIDS Network is established. The        Women excluded from HIV trials unless on
                                                      the birth control pill or IUD; no childcare,     inclusion. Bruce Lambert writes an article
      CDC adds female sexual partners of men                                                           on Alison L. Gertz, a 23-year-old hetero-
      with AIDS as a “risk group.” The New York       transportation or GYN care is available. Trial
                                                      inclusion/exclusion criteria read: “No preg-     sexual, affluent woman from a prominent
      Post headline reads “L.I. Grandma Dead of                                                        family who is living with AIDS. In later
      AIDS.” The story goes on to describe how        nant women and no non-pregnant women”
                                                      allowed. Surgeon General C. Everett Koop         years, a movie is made about her life.
      Lorraine DeSantis dies from AIDS after                                                           Amanda Blake, TV Star (“Miss Kitty”) on
      receiving a blood transfusion in 1980.          urges any woman considering pregnancy
                                                      to be tested for HIV. Princess Diana opens       Gunsmoke dies from AIDS. Sisterlove, Inc.
      1984 Health and Human Services                  the first specialist AIDS hospital ward in       is founded by Dazon Dixon as the first and
      Margaret Heckler announces that Dr. Robert      England. The fact that she did not wear          oldest organization in Georgia to focus on
      Gallo has found the cause of AIDS. She also     gloves when shaking hands with people            the needs of women living with and at
      announces the development of a diagnostic       with AIDS was widely reported in the press       risk for HIV. BABES is founded by HIV+
      blood test to identify the virus                             and helped change attitudes         women in Seattle under the philosophy
      and suggests that a vaccine                                  towards people with AIDS.           that HIV+ women are uniquely qualified to
      against AIDS could be produced        “There will be                                             understand and encourage one another.
                                                                   Madonna throws her first AIDS
                                            a vaccine in a
      in two years. Caitlin Ryan, a                                benefit concert and later
                                        few years and a cure records a song, “In This Life”,
                                                                                                       1990 The First National Women and
      social worker, becomes the                                                                       HIV Conference is held. ACT-UP spear-
      first executive director of AID for AIDS before 1990.” about friends who had died                heads a massive protest at the Centers for
      Atlanta. AID Atlanta is the old-     Margaret Heckler.       from the disease. St. Louis         Disease Control in Atlanta to expand AIDS
      est AIDS Service Organization                                University School of Medicine       definitions to include women specific dis-
      (ASO) in the Southeast.                         produces Strong Women, Positive Choices, an      eases. Women with AIDS lead the
      1985 Elizabeth Taylor and Dr.                   award winning documentary on the lives of        demonstration; 94 are arrested. An esti-
      Mathilde Krim co-found AmFar (the               HIV+ women.                                      mate of women worldwide with HIV is at 3
      American Foundation for AIDS research).           1988 The New Jersey Women and AIDS             million. Cook County Hospital (the only
      Elizabeth Taylor hosts the first Hollywood        Network is founded. Revised NIH guide-         hospital with an AIDS ward in Chicago)
      AIDS fundraiser. San Francisco AIDS               lines suggests “by gender” analysis of data    refuses to admit women stating they have
      Foundation produces their first brochure          being collected in clinical trials however     no women’s AIDS ward. Gay and Lesbian
      about Women and AIDS. Bette Midler and            does not establish clear standards for         activists set up a ward in the street in
      Barbara Streisand appear in a sold out            women’s inclusion. Cosmopolitan Magazine       front of the hospital; 35 are arrested. Two
      fundraiser for the San Francisco AIDS             article written by a psychiatrist tells        days later, the hospital admits women with
      Foundation. Mother Teresa visits AIDS             women that they can have unprotected           AIDS for the first time. National “Speak
                                                                                                       Out” by women with AIDS is held in
our history

       Washington, DC to protest the Social             Caucus, Health and Human Services                Research to Save Women’s Lives” echo the
       Security definition of disability, which dis-    Secretary Donna Shalala forms a Lesbian          conference halls. The Los Angeles Times
       criminates against women and people of           AIDS Task Force. Gena Corea’s book, The          publishes an article on the conference.
       color. On March 7th, the CARE bill was           Story of Women and AIDS: The Invisible           Princess Diana, one of the fist public fig-
       introduced into the Senate and House.            Epidemic, is published.                          ures to urge compassion for people living
       During a Budget Committee that same day,                                                          with AIDS dies in an automobile crash.
       Elizabeth Taylor speaks forcefully in sup-
                                                        1994 The ACTG 076 study finds that               Poet River Huston’s book, Portraits of
                                                        pregnant women taking AZT reduce the risk        Women Living with HIV, is released. The
       port of the bill during her testimony,
                                                        of HIV transmission to their unborn child        book’s idea was stimulated by River’s own
       playing a vocal and visible role in its intro-
                                                        by two-thirds. The Public Health Service                         HIV diagnosis and the lack
       duction. Elizabeth Glaser, a woman living
                                                        recommends that HIV-positive
       with HIV, speaks at a House subcommittee
                                                        pregnant women use AZT to          Jocelyn Elders is fired of images of women living
       hearing on pediatric AIDS, where she is                                                                           with HIV in society. Catholic
                                                        reduce mother-to-child trans-       by President Clinton
       praised for convincing the formerly unre-                                                                         World News reports that
                                                        mission. Elizabeth Glaser,             for saying that           Mother Teresa plans to start
       sponsive Ronald Reagan to do a public            co-founder of the Pediatric         masturbation should          a new AIDS Ministry in the
       service announcement on pediatric AIDS.          AIDS Foundation, dies.              “perhaps be taught”          United States. Her religious
       1991 Kimberly Bergalis says her den-             Jocelyn Elders is fired by       as part of sex education. order, The Missionaries of
       tist infected her with HIV and requests          President Clinton for saying                                     Charity, currently run five
       that Congress mandate testing of                 that masturbation should “perhaps be             hospices for persons living with AIDS.
       healthcare workers. Kimberly writes the          taught” as part of sex education. Rae
       American Medical Association (AMA)               Lewis-Thornton, an African American              1998 In South Africa, Gugu Diamini,
       requesting mandatory testing of healthcare       woman living with HIV, is featured on the        an AIDS activist, was beaten to death by
       workers. She dies by year’s end. WORLD           cover of Essence magazine.                       her neighbors after revealing her HIV sta-
                                                                                                         tus on Zulu television. 45% of the
       (founded by Rebecca Denison) publishes           1995 Actress Sharon Stone becomes                cumulative HIV cases reported among
       their first newsletter, by and about women       AmFar’s celebrity spokeswoman. Elizabeth
       living with HIV. Mary Fisher, a prominent        Dole, president of the American Red Cross        Asian and Pacific Islander adult/adolescent
       woman in Washington circles, is diagnosed        and wife of Bob Dole (then the front-run-        females acquired HIV through heterosexual
       with HIV. Women Alive is founded in Los          ner for the 1996 Republican presidential         transmission. A cumulative total of
       Angeles by and for women living with HIV.        nomination) halts publication of a highly        109,311 adolescent /adult females have
       Mother’s Voices, a group founded by five         anticipated HIV/AIDS training manual for         been diagnosed with AIDS in the U.S. 63%
       mothers who had lost a child to AIDS, is         1600 Red Cross chapters nationwide when          of newly reported female AIDS cases are
       founded by Suzanne Benzer.                       her “special team” of advisors from outside      African-American women. African
                                                        the organization convinces her its con-          American women are three times more
       1992 Mary Fisher addresses the                   tents are too explicit and controversial.        likely to die from AIDS than Caucasian or
       Republican National Convention as a
                                                        President Clinton appoints Dr. Alexandra         Hispanic women. Of the 6,051 new HIV
       person living with AIDS and stated “I
                                                        M. Levin to the Presidential HIV/AIDS            cases reported in women, 8% (461) were
       don’t know what kind of reception my
                                                        Advisory Council. Dr. Levin’s research           among Latinas. The Global Campaign for
       speech received. It was like an out-of-          includes HIV-associated lymphoma, women
       body experience. People told me                                                                   Microbicides is founded at the XII
                                                        and HIV, and the development and testing         International AIDS Conference in Geneva.
       afterwards that the room got completely          of a therapeutic AIDS vaccine.
       silent while I spoke, which is unheard of                                                         The creation of the Microbicide campaign
       at a convention. Afterwards, President           1996 The annual incidence in women               came about from key members of the
       Bush said I’d done a wonderful thing.”           diagnosed with AIDS begins to decline            women’s health and HIV community decid-
       Elizabeth Glaser gives a speech to the U.S.      because of the success of antiretroviral         ing to work together to focus world
       Democratic National Convention as a per-         therapies in the U.S. Rebecca Denison            attention on the critical need for new HIV
       son living with AIDS. A full page ad in the      (founder and editor of WORLD) delivers           prevention options, especially for women.
       New York Times reads “Women Don’t Get            twin girls, becoming one of the first HIV-       AIDS researcher Dr. Mary-Lou Clements-
       AIDS. They Just Die From It.” Over 300           positive women to talk publicly about her        Mann is killed in the crash of Swissair
       grass-roots groups signed the ad. The CDC        decision to become pregnant.                     flight 111. Kate Shindle wins the title of
       expands the definition of AIDS to include:       1997 Women account for more than                 Miss America under the platform of
       bacterial pneumonia, TB and stage III cer-       half of HIV cases worldwide. In March,           HIV/AIDS education. She travels all over
       vical cancer. Recurrent vaginal candidiasis      The NAMES Project Foundation presents a          the country on a national speaking tour
       (yeast infections) was also added as a           month-long online Quilt display on its           entitled “On the Way to a Cure: Preventing
       symptom of HIV. This is a victory for            World Wide Web site featuring panels made        HIV transmission in America.” She also
       women living with HIV. AIDS Survival             for women who have died from AIDS, in            moderates a panel discussion on Women
       Project creates the first support group for      honor of National Women’s History Month.         and AIDS at the 12th annual world AIDS
       women living with HIV in Atlanta. Three          75% of cases are in women of color.              conference in Geneva, Switzerland at the
       women attend the first group.                    Sandra Thurman, former Executive                 invitation of U.S. Health and Human
                                                        Director of AID Atlanta, is named AIDS           Service Donna Shalala .
       1993 The “female condom” is                      Czar. Therapist Penny Chernow starts the
       approved. Kristine Gebbie is appointed as
                                                        first support group in San Francisco for         1999 Mary Fisher makes primetime
       the first national “AIDS Czar”, director of                                                       news announcing that she is stopping com-
                                                        older women with HIV. The National
       the Office of National AIDS Policy. In                                                            bination therapy due to the side effects.
                                                        Conference on Women and HIV takes place
       response to protest by ACT-UP’s Lesbian
                                                        in Pasadena, CA and chants of “Do                                       (continued on page 6)
our history

      Of new cases of AIDS reported in women,            1980s and is the co-founder of Heaven In        by Salli Trathen is available in print. This
      68% were in ages 30-49, 18% were in ages           View, Inc. “A Positive Force.”                  book describes the lives of five Australian
      20-29 and 12% were in ages 50 and over.                                                            women who are living with HIV/AIDS.
      Overall, heterosexual transmission accounts
                                                         2001       UNAIDS found that in India,
                                                                                                         After six years as the director of the
                                                         women are often blamed by their parents
      for an estimated 62% of AIDS cases diag-                                                           National Center for HIV, STD, and TB
                                                         and in-laws for infecting their husbands or     Prevention with the Centers for Disease
      nosed among women between July
                                                         for not controlling their partners urges to     Control in Atlanta, Dr. Helen Gayle resigns
      1999-June 2000. The National Conference
                                                         have sex with other women. At a confer-         to become the Bill and Melinda Gates
      on Women and HIV is held in Los Angeles,
                                                         ence in Chicago, conference attendee Judy       Foundation’s senior advisor on HIV. U.S.
      CA. Over 1,000 women attend. This event
                                                         Delmar states, “This disease does not nec-
      is documented as the largest gathering of                                                          U.S. Department of Health and Human
                                                         essarily behave the same way in both
      HIV+ women in history. Worldwide over one                                                          Services releases “A Guide to the Clinical
                                                         genders. It’s just a different disease in
      million women died of AIDS, the highest                                                            Care of Women with HIV”, the first man-
                                                         women.” (The statement was made in
      number so far in a single year.                                                                    ual specifically written about the
                                                         response to the need for women to be
      2000 In the South, more women with                 included in clinical drug trials and other      medical care for HIV positive women. .
      AIDS report their exposure as heterosexual         AIDS-related research). An article written      Korrin Krause, a sixteen year old living
      contact than injecting drug use and                by Jane P. Fowler, on persons living with       with HIV, is fired from her job at the
      approximately 3-4 times more cases are             HIV over 50, is published in Positive           Quality Foods IGA in Wisconsin. A store
      reported from the South than from the              Living. Jane is a woman living with HIV         representative stated that he did not want
      Midwest and West. 45,000 women 15-44               who was diagnosed at the age of 55 and is       other store workers “to take this (HIV)
      years old are reported to be living with           the co-chair of the National Association        home to our families.” The Equal
                                                                                                         Employment Opportunity Commission has
      AIDS in the United States. 63% of women            on HIV over Fifty. Dr. Mathilde Krim,
                                                                                                         sided with Krause in May however a settle-
      reported with AIDS are African American.           Founding Chairman and Chairman of the
                                                                                                         ment has not been reached.
      Ofra Haza, Israeli singer, dies of AIDS.           Board of the American Foundation for
      Coretta Scott King launches the AIDS               AIDS Research (amfAR), receives the
      Memorial Quilt to black colleges and               African-America Institute’s Award for           Terri L. Wilder, LMSW is a licensed social worker
      Universities. One of four pregnant women           Individual Vision and Achievement. The          who has provided social services for persons
      in South Africa are living with HIV. The           Natural Family Living Magazine Mothering        living with HIV/AIDS for the past twelve years.
      FDA (Food and Drug Administration) passes          cover page article is “HIV+ Moms Say No         She can be reached at
      the Clinical Hold Rule. This allows the FDA        To AIDS Drug; Special Report: HIV,              Terri invites women who are interested in adding
      to delay or suspend any clinical trial that’s      Families & Medical Justice.” Many of the        information to this history to contact her. Terri
      found to exclude women (or men) because            articles describe the stories of several HIV+   apologizes for any oversights in our history.
      of it’s “reproductive potential.” This dra-        women who chose not to use anti-HIV             The history is dedicated to the countless power-
      matically increases the opportunity for            medications during pregnancy in order to        ful women who are living with and affected by
      women with HIV to take advantage of drug           avoid the possibility of side effects and       HIV including: Kellie, Ilyse (who is the CEO of
      trials and other treatment research. Valerie       toxins that could affect their unborn           her own company), Jane P. Fowler, River,
      Reeder-Bey along with her granddaughter            child. Another article describes one HIV+       Marguerite G. Wilder, Regina Ann Goldsworthy
      Annisha Monic Wilburn publish “My                  woman’s fight to breast feed her child          Stott, Susan, Eva, Valerie Reeder-Bey, Annisha
      Grandma Has AIDS: Annisha’s Story.” Valerie        despite her doctor’s protest. Blood Ties-       Monic Wilburn, Lois C. and yes, Cara.
      has been living with HIV since the late            The Stories of Five Positive Women edited

                                                                                                                                       Use by permission.

                                      IN MEMORIAM

                                              It is with great saddness that we inform
                                              you of the dealth of Delia Rodriguez,
                                              former assistant director of the LTI and
                                              tireless advocate. She passed away in
                                              her homeland of Puerto Rico on Friday,
                                              July 11th.
                                              Delia's passion, humor and good spirit
                                              will be sorely missed.

THE DENVER PRINCIPLES                                                                                  FOR WOMEN WITH HIV

Editor’s Note: Twenty years ago this summer, the Denver Conference of 1983 (Second                  ◗ IRIS HOUSE (NYC) Support
                                                                                                      groups, individual counseling,
National AIDS Forum, held by what is now the National Gay and Lesbian Health
                                                                                                      case management, treatment
Association)was held, at which a group called the Patients Advisory Committee, comprised              and prevention education,
of people living with AIDS, created and declared The Denver Principles, a declaration of              advocacy, childcare services
the rights and responsibilities of PWAs (now PWHA). This meeting is commonly acknowl-                 and emergency intervention
edged as the birth of the self-empowerment movement for PWAs.                                         for HIV-positive women and
                                                                                                      their families. Services offered
Although first largely connected to the experience of gay white men and the gay rights
                                                                                                      in English and Spanish.
movement, the PWA advocacy movement has grown into a truly global movement com-                       212-423-9049
mitted to the rights of all people to healthcare, treatment and dignity.
This anniversary of the Denver Principles is a time to remember and honor those who                 ◗ JUST KIDS (NYC) Support
                                                                                                      groups, treatment information,
have gone before us for their wisdom, courage and prescience in articulating both the
                                                                                                      holistic and alternative
responsibilities of governments and nations to people in need, but also the responsibil-              therapies, childcare assistance,
ities of those in need to each other and their communities.                                           advocacy and conflict resolution
This anniversary is also an opportunity to ring the changes that have taken place in                  services for at-risk children and
the last twenty years, not only in terms of treatments available and global aware-                    their parents. Also has a
                                                                                                      national hotline connecting
ness but also in terms of the strengths that come from diversity, tolerance and
                                                                                                      parents to parents.
mutual dependence and independence.                                                                   800-341-1880
                                                                                                      or 212-627-3390 x51
THE DENVER PRINCIPLES             (Statement from the advisory committee of the People with AIDS)     e-mail:
We condemn attempts to label us as “victims,” a term which implies defeat, and we
are only occasionally “patients,” a term which implies passivity,                                   ◗ LESBIAN AIDS PROJECT (NYC)
                                                                                                      GMHC—Support groups
helplessness, and dependence upon the care of others.
                                                                                                      and information.
We are “People With AIDS.”                                                                            212-367-1355
1. Support us in our struggle against those who would fire us from our jobs, evict                  ◗ LIFE FORCE (Brooklyn)
   us from our homes, refuse to touch us or separate us from our loved ones, our                      Support groups, treatment
   community or our peers, since available evidence does not support the view that                    and prevention education,
   AIDS can be spread by casual, social contact.                                                      referral services, harm reduction,
                                                                                                      advocacy and counseling for
2. Not scapegoat people with AIDS, blame us for the epidemic or generalize about                      those who are HIV-infected
   our lifestyles.                                                                                    or affected.
RECOMMENDATIONS FOR PEOPLE WITH AIDS                                                                  718-797-0937
1. Form caucuses to choose their own representatives, to deal with the media, to                    ◗ WOMEN AND FAMILY
   choose their own agenda and to plan their own strategies.                                          SERVICES (NYC) GMHC
2. Be involved at every level of decision-making and specifically serve on the                        Harm reduction, education,
   boards of directors of provider organizations.                                                     support services and special
                                                                                                      events for women and families
3. Be included in all AIDS forums with equal credibility as other participants, to
                                                                                                      infected with or affected
   share their own experiences and knowledge.                                                         by HIV/AIDS.
4. Substitute low-risk sexual behaviors for those which could endanger themselves or                  212-367-1363
   their partners; we feel people with AIDS have an ethical responsibility to inform                  e-mail:
   their potential sexual partners of their health status.
                                                                                                    ◗ WOMEN IN NEED (NYC) Offers
RIGHTS OF PEOPLE WITH AIDS                                                                            housing assistance and support
1. To as full and satisfying sexual and emotional lives as anyone else.                               for women at several residences
2. To quality medical treatment and quality social service provision without dis-                     throughout New York City.
   crimination of any form including sexual orientation, gender, diagnosis,                           Manhattan: 212-582-8680
                                                                                                      Bronx: 718-402-0067, 718-
   economic status or race.
                                                                                                      733-8880 or 718-933-2600
3. To full explanations of all medical procedures and risks, to choose or refuse their                Brooklyn: 718-771-3088
   treatment modalities, to refuse to participate in research without jeopardizing
   their treatment and to make informed decisions about their lives.
4. To privacy, to confidentiality of medical records, to human respect and to choose
   who their significant others are.
5. To die—and to LIVE—in dignity.

    IT STOPS WITH US!                          Additionally, the group also decided
    (continued from front)                     to use the slogan “HIV stops with me,        UPCOMING CONFERENCES
    decided they would do something            does it stop with you? – Take The Test
    about community perceptions of peo-        – Take Control,” to promote testing        JULY
    ple with HIV/AIDS.                         while simultaneously reinforcing the       NATIONAL HIV PREVENTION
                                               message that, as Richard says, “PWHA       CONFERENCE
    Spearheaded by LTI graduates Mark          are part of the solution, not part of
    Hayes, Richard Hahn, Perry Junjulas                                                   JULY 27-30, 2003 ATLANTA, GA
                                               the problem, and the biggest danger
    and Vanessa Johnson, [for more on                                                     Sponsored by the Centers for Disease
                                               in HIV is people who are infected and
    Vanessa’s advocacy efforts see the arti-                                              Control and Prevention (CDC) and the
                                               unaware of their status.”                  Natinal Minority AIDS Council (NMAC)
    cle on Catch A Rising Star on page 3],
    a plan was launched to educate the         With the plan in hand, Mark Hayes,         Tel: 800-277-6313
    community about people with HIV            co-chair of the Community Awareness        Web:
    while at the same time encouraging         sub-committee of the Ryan White HIV
                                               CARE Network of Northeast New York,        AUGUST
    people to be tested.
                                               drafted a $20,000 proposal to the          6TH ANNUAL STAYING ALIVE
    “We knew we wanted to make as big          Community AIDS Partnership of the          CONFERENCE: TWO DECADES
    an impact as possible,” says activist      Capital Region for funds to run the        OF POSITIVE LEADERSHIP
    Richard Hahn. “We wanted to do             campaign, which were awarded in            AUGUST 15-17, 2003 DENVER, CO
    something really visible that, while it    January. The Community AIDS                Sponsored by the National Association
    wouldn’t respond directly to the igno-     Partnership is a private not-for-profit    of People with AIDS (NAPWA)
    rance we saw recently, would share a       agency that sponsors the annual            Tel: 202-898-0414, Ext 121
    positive message about PWHA and            AIDSWalk in the Capital Region.            Email:
    encourage people to learn as much as
    possible about HIV and their own           Project WAVE (War Against the Virus        SEPTEMBER
    health status.”                            Escalating), a nonprofit organization
                                                                                          UNITED STATES CONFERENCE ON AIDS
                                               working to reduce HIV transmission in
    It was decided to seek funds for a                                                    SEPTEMBER 18-21, 2003 NEW ORLEANS, LA
                                               communities of color, added their sup-
    public advertising campaign to encour-                                                Sponsored by the National Minority
                                               port to the prevention campaign by
    age people to get tested as part of                                                   AIDS Council (NMAC)
                                               having some of the posters placed on
    National HIV Testing Day on June 27th.                                                Tel: 202-483-6622
                                               billboards around town and working
    The idea was to dovetail the campaign                                                 Web:
                                               with local radio stations to get the
    with “Take the Test Week,” an initia-                                                 4TH NATIONAL CONFERENCE
                                               testing message out. Through Project
    tive organized by a group of nine                                                     ON HIV/AIDS AND AGING:
                                               Wave’s excellent collaboration/negoti-
    service providers—The Capital Region                                                  PREVENTION, CARE AND MANAGEMENT
                                               ations with Lang Media and Clear
    Take The Test Coalition—encompassing                                                  OF HIV OVER FIFTY
                                               Channel Communications, the bill-
    Albany, Rensselear, Saratoga and                                                      SEPTEMBER 5-6, 2003 SCOTTSDALE, AZ
                                               boards will continue to be placed on
    Schenectady counties. It included a                                                   Sponsored by National Association
                                               unused inventory though-out the year
    week-long series of community events                                                  of HIV Over Fifty
                                               and JAMZ 96.3FM will continue to
    and 26 separate locations where peo-                                                  Tel: 617-233-7107
                                               encourage urban hip-hopper’s to seek
    ple can be tested during the last week                                                Web:
                                               testing as well.
    in June.
                                               “It got so you couldn’t go anywhere in
    “We thought it would be very powerful
                                               the area without seeing one of the
    to combine our attempt to educate the                                                nity to agree to be part of the cam-
                                               posters,” Richard says. “It was extra-
    community about people with HIV with                                                 paign, that we represented the full
                                               ordinarily empowering. The press were
    the Take The Test Week’s message,”                                                   spectrum of people living with HIV in
                                               great in interviewing people who
    Richard explains. “We decided to create
                                               appeared in the campaign, and it was      the posters – Black, White, Latino,
    a blanket campaign that would cover
                                               clear we were really changing percep-     Gay, Straight, male, female -- and that
    the four county region for the entire
                                               tions of PWHA in the area.” In fact,      we showed that we were a powerful
    month of June with 80 percent market
                                               even the federal Centers for Disease      positive force in and of the communi-
    saturation of advertising on the bus
                                               Control and Prevention (CDC) took         ty, while at the same time providing a
    shelters and internal bus cards. We also
                                               notice and reported on the campaign!      clear message to promote testing. I
    decided that the campaign would fea-
                                                                                         think it was pretty cool.”
    ture self-identified local community       “What was most moving to me,”
    members living with HIV so that peo-       Richard continues, “is that we had no     We think so too. Congratulations to
    ple could see our diversity.”              trouble getting PWHA in the commu-        all the advocates involved!


To top