Community organizing strategy

In New York City, even though more men who have sex with men (MSM) become
infected with HIV, women are more than twice as likely to die from the disease. Not only are
women dying at higher rates, the actual number of dying women is higher at 425 women
compared to 279 MSM in 2016. Among women, Black and Hispanic/Latinx women make up
92% of HIV deaths which is eight and five times more than white women, respectively.1 This
number needs to improve for Black and Latin women with HIV. Because HIV/AIDS was
historically understood as the “gay cancer” GRID, energies have been narrowly focused on MSM
to the detriment of women. This has resulted in a lack of research, inequitable distribution of
resources, persistent stigma and delayed care, and ultimately poorer outcomes.2 For example, a
systematic review of HIV interventions targeting women, one of very few, showed that they do
not adequately consider contextual and social factors that influence women’s behavior.3 So as
women, especially women of color, have been left behind, we need to dispel stigma, better
understand the factors that impact women’s ability to take care of their health, and give them the
ability to do so in order to make their death rates at least equivocal to MSM if not eradicated.
Iris House is an organization in Harlem that was created by Black women living with
HIV to serve other women of color living with HIV for the past 25 years.4 They are an institution
in the community that is best placed to change the trends for women in NYC. I believe one
strategy to address this disparity is to use Iris House’s standing in the community to run an issue
visibility campaign through storytelling that lifts up the voices of women living with HIV,
increases the number of women utilizing Iris House’s resources, increases funding specifically
allocated for women, empowers more women to take on the issue, and ultimately reduces the
number of women dying from HIV as reported by the Department of Health. Storytelling of
women’s HIV journey and the barriers they faced for the function of organizing in this issue is
multipurpose. Foremost, it shows support and understanding for women living with HIV
especially to those who are experiencing the same barriers, encouraging them to connect to
care/Iris House. It also shines light on stigma and raises awareness of barriers for key players to
address. As other HIV-positive black women activist have put it, “the best way is to rebelliously
oppose the status quo of shame and silence.”5
To accomplish this, even though Iris House has the women and the experience to build a
campaign, they would first benefit from building relationships with other women-first, POC, or
HIV organizations for energy and reach and potentially get a larger base of stories. The issue
would most effectively be presented by a member-leader from Iris House as another gender
inequality in deaths and inequity in HIV resources to these organizations that are fighting gender
and race inequality such as NOW-NYC,6 Girls for Gender Equity,7 UltraViolet,8 Sister Song,9 and
Harlem United.10 A goal would be to have two other organizations decide to actively participate
in this campaign to build a trifecta of support and have at least a total of four other organizations
pledge their willingness to blast their social media, listserves, and webpage with the campaign
content. Because one of the goals would be for funding, it should be clear that funding goes to
Iris House as they are frontline providing care services. Money between NGOs is often a point of
contention, so that discussion would need to be handled delicately.
The next step would be to compile stories from women living with HIV. The key prompts
should include what they wish other women would know, what challenges they had, what they
wish the world to be. Release of information would need to be collected including photo waivers.
It would be important for the coalition of Iris House member-leaders and the other organizations
to decide on the optics of minimum quota of representation for example by race/ethnicity, gender
expression, and experiences. Stories could be invited from Iris House clients or other women
living with HIV from other organizations. It would be important to consider how clients may feel
about opening up to organizations they may depend on. In medicine, patients are sometimes
worried that if they question doctors or reveal an identity they may receive different care. This
needs to be considered for clients too. This can be addressed by offering a nondiscrimination
clause (this does not affect how we care for you), option for anonymity, transparency of
intentions, and an invitation to be an active member-leader of this campaign.
These stories will then need to be coded and condensed to snapshots and key themes for
talking points. Members and storytellers can read other stories, with permission and sensitivity,
and code the transcripts with some training to understand what coding is, similar to community
based participatory research style. This effectively does two things: 1) members and storytellers
have insight that may pull out themes outsiders would not have known and 2) their similarities to
the women this campaign is directed towards helps to identify what most resonates with them.
At this time, member-leaders could build a relationship with First Lady Chirlane
McCray’s office of the Mayor’s Fund. Since McCray has chaired the fund, there has been
financial support directed towards people of color, LGBTQ youth, and aspects of health care.11
So this campaign fits the kind of project that the First Lady would fund. This relationship could
be built by having storytellers tell their stories. The goal would be funding for the campaign. As
of now, storytellers would have been volunteers, but the coalition can decide how they spend the
funds. A priority for the funding would be for advertising the stories, the campaign, and Iris
House. However, it needs to be clear that the funding is not attached to any major altering input
from the Mayor’s Fund.
Simultaneously, work needs to be done to design ads, create webpages, produce videos,
and write articles to be distributed for the campaign. Storytellers or partner organizations with
experience would be helpful. It would be important to include certain consistent messages like
what the barriers are, who women can go to (Iris House), and why. A lot of this would be from
the decisions made during the coding. Again, being clear that this campaign advertises Iris House
will need to be clearly discussed in terms that the House provide direct services to address this
issue. Funds possibly could be used to pay for design help.
When the designs and scripts are ready, media, social media, and public transport should
be utilized to disseminate the campaign materials. In my time working at ABC News, I learned
that news stations will pick up these kinds of stories for organizations if there is a public shock
factor (dire statistics) and emotional pulls (stories). ABC, NBC, Fox, AMNY, etc. could all do
print and digital dissemination of the stories and messaging. Twitter, Facebook, Snapchat, and
Youtube would also be important to use. And partner organizations can also blast their webpage
and listserves. When working with other organizations and media, the campaign needs to be very
clear about how things are worded and produced, otherwise the message can escape you if the
editors are not tightly managed. The coalition needs to discuss how long to have the campaign
run, but to be effective, it should be a minimum of 2 months.
Other things that would help publicity and pull media would be to throw a kick-off rally
with storytellers telling their stories publically and a reading tour. Things to consider in a rally
would be location (think Harlem’s Adam Clayton Powell Square), law enforcement presence,
organizations to invite, messaging, and time. The coalition should discuss if inviting First Lady
Chirlane McCray to speak at the rally because of the Mayor’s Fund would be beneficial. On one
hand it could be powerful to show that this is a priority of the City; on the other hand, it may be
too close to government for some of the clients. A reading tour would be powerful, inviting
women to tell their stories at different venues such as the Apollo, schools, parks, the Moth, on
podcasts. They could be streamed live online. A minimum of three would make it a tour.
When those are completed, the short term outcome goal is to measure the utilization of
resources or intake at Iris House over the next six months because if there is increased utilization
there, more women may be getting care around. Another possible measure is sustained viral
suppression, however, people may not be at a place where they can maintain SVR and the main
goal is for more women to be engaged in their care. We do not want to further stigmatize women
that do not have the capacity at this time to focus on their HIV care.
With the concerns at hand and publicity about the issue, it would then be worthwhile to
discuss allocation of funds with the Center and GMHC as they hold much of the financial power
for AIDS fundraising.12,13 A satisfactory outcome is that they pledge to allocate specific amounts
of their AIDS walk and Cycle for the Cause fundraising to women HIV organizations. There may
be pushback as men who have sex with men still have the highest infection rates, however, there
is moral difference between living with infection and death. The same discussion should be had
with the Department of Health either for them to take on the issue with their own campaigns or
increase funding to do more research or activity.
The ultimate outcome measure would be to see the number of women HIV deaths
especially among Black and Latin women decrease. This will not be seen until the next HIV
surveillance report. But hopefully through this campaign, the work to decrease stigma and the
shadows gets women to engage in care that fits their needs, participating members feel
empowered to be changers, and that more prioritized action and interest is stimulated around this
disparity.

Works Cited

1. HIV Surveillance Annual Report, 2016. New York City Department of Health and Mental

Hygiene. Retrieved from https://www1.nyc.gov/assets/doh/downloads/pdf/dires/hiv-

surveillance-annualreport-2016.pdf.

2. Women and the Ryan White HIV/AIDS Program. HRSA. Retrieved from

https://hab.hrsa.gov/livinghistory/issues/Women-And-Aids.pdf.
3. Azhar, S, et al. A Systematic Review of HIV Prevention Interventions Targeting Women with

Criminal Justice Involvement. Journal of the Society for Social Work and Research,

2014. Retrieved from https://www.journals.uchicago.edu/doi/full/10.1086/677394.

4. Iris House. [Website] http://www.irishouse.org/.

5. Melton, Monica L. “Work What You Got”: Political Participation And HIV-Positive Black

Women’s Work To Restore Themselves And Their Communities. Journal of

Interdisciplinary Feminist Thought, 2014. Retrieved from

https://digitalcommons.salve.edu/cgi/viewcontent.cgi?article=1069&context=jift.

6. National organization for women - NYC. [Website] http://nownyc.org/.

7. Girls for Gender Equity. [Website] http://www.ggenyc.org.

8. UltraViolet. [Website] https://weareultraviolet.org/.

9. Sister Song, Inc. [Website] https://sistersong.net.

10. Harlem United. [Website] https://www.harlemunited.org/.

11. Mayor’s Fund to Advance New York City. [Website]

http://www1.nyc.gov/site/fund/index.page.

12. About. AIDS Walk New York. Retrieved from https://ny.aidswalk.net/About.

13. About the ride. Cycle for the Cause. Retrieved from https://cycleforthecause.org/about-the-

ride/.