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
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
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.
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.
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.
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 email@example.com. 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 www.powerwalknyc.org.
For more information about SMART University and their programs, please call
917-593-8797 or email them at firstname.lastname@example.org.
WOMEN & HIV TIMELINE: THE FIRST 20 YEARS
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
WOMEN & HIV TIMELINE: THE FIRST 20 YEARS
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)
WOMEN & HIV TIMELINE: THE FIRST 20 YEARS
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 email@example.com.
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.
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,
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: firstname.lastname@example.org
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)
helplessness, and dependence upon the care of others.
We are “People With AIDS.” 212-367-1355
RECOMMENDATIONS FOR ALL PEOPLE
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: email@example.com
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: www.2003hivprevconf.org
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: firstname.lastname@example.org
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: www.namc.org
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: www.hivoverfifty.org
testing as well.
“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!