Veteran HIV Prevention and Social Justice Activist Julie Davids
In December 2010, TAGline caught up with the super energetic and visionary HIV activist Julie Davids, veteran of ACT UP/Philadelphia, HealthGAP, and a slew of more recent U.S. HIV prevention and social justice organizations such as CHAMP, Project UNSHACKLE, and the HIV Prevention Justice Alliance. In January 2011 Julie took over as national advocacy and mobilization director for the AIDS Foundation of Chicago. TAGline asked Julie to address the following questions:
o What changes have happened to HIV prevention
research and programs domestically since CHAMP was formed?
o How have they changed over that period?
o What are the challenges facing HIV
prevention research and programs today?
o What are the key activist strategies to deal
with these challenges?
o What is needed, and who needs to do it?
Julie Davids: The
Community HIV/AIDS Mobilization Project (CHAMP) has ended operations as of this
writing, though is sustaining our two main networks (Project UNSHACKLE and the
HIV Prevention Justice Alliance) through excellent allied organizations
(NYCAHN/VOCAL and AIDS Foundation of Chicago, respectively).
Having had the privilege of founding the group in 2003, and
working with it until its closure, my feelings about this transition are
understandably complex--but I appreciate the opportunity to reflect a bit on the
past and speculate on the future in these pages.
But first, I wish to invite anyone who has had experiences
with CHAMP and/or thoughts on the past decade of mobilization, organizing, and
policy work on HIV/AIDS in the United States to join our online reflections on
our work, the climate in which it occurred, and ideas for future directions.
The discussion will be hosted by www.preventionjustice.org
on an ongoing basis, and submissions can be made as letters, statements,
comments on other posts, or links to online media.
In 2002, I began to engage in dialogue with other HIV/AIDS
and social change activists as I sought to sketch out what became CHAMP. That
fall I had the opportunity to craft some thoughts on domestic HIV/AIDS
organizing in this newsletter
("The Way Forward: Philly ACT UPer and Health Gap Founder Tackles the
Challenges of an Aging Activist Movement," TAGline,
At that time I assumed that a regional or national HIV
mobilization initiative focused on building a new generation of leadership
while maintaining our community's history of strong advocacy would and should be
focused on treatment. But as I moved
forward in talking to others about these ideas, people started to confront me,
asking, "What about HIV prevention?"
There was a sense of frustration that HIV prevention was,
for the most part, outside the scope of much of the AIDS community's diverse
organizing and policy change efforts while remaining underfunded and
underresearched. Yet it was visibly in the crosshairs of conservative
politicians in the seemingly endless days of the [George W.] Bush
administration. And I was part of
the problem for sure: I remember my broad ignorance on the subject, thinking,
"HIV prevention? That doesn't really
work, does it, outside of syringe exchange and PMTCT?"
But the more I learned, the more I felt compelled to jump
in. I got schooled in the need for HIV prevention advocacy, which had to not only build the power to resist attacks but integrate
a broad range of social justice and equity issues; broaden the concept of HIV
prevention beyond abstinence, condoms, and clean needles; and delve into
challenging research questions that had never been adequately explored.
Although we struggled with issues of capacity and
sustainability, CHAMP had a noted impact on HIV prevention advocacy. Entering a
realm with little public, strategic conversation and a wide gap between the
small but growing body of prevention research and the underfunded, earnest
prevention programs at the community level, we found ourselves bridging
disciplines and sectors, becoming a trusted "content provider" feeding honest
and strategic information to hardworking front-line prevention workers and
policy leaders alike, and a leader in strategic campaigns and coalition
Over time we crafted a national network of 12,000
people--many deeply involved in the fight against HIV/AIDS--who were able to take
quick action through online alerts, and who were invited to contribute to
debate and dialogue at our events, conference calls, and trainings.
CHAMP began in 2003 by drawing community attention to the
secretive process the Centers for Disease Control and Prevention (CDC) was
using to revamp their prevention efforts under the "Advancing HIV Prevention"
rubric, which was to have major implications, including the near fossilization
of interventions into a set of mandated "boxed" interventions.
Now the broader federal government, with much leadership
from the CDC, stands poised to reorient prevention approaches in a time of the
National HIV/AIDS Strategy (NHAS). Last year was a very busy year that saw the
release of the unprecedented NHAS as well as encouraging results of partial
efficacy from microbicide and preexposure prophylaxis (PrEP) trials. But CHAMP,
which grew out of those initial constructive confrontations from prevention
advocates seeking a national movement, is shutting down.
what do we do now?
continue the fight.
Looking at the successes and failures of CHAMP and other
efforts, I've learned that this fight must not be limited to one-time or
short-term trainings, small-scale technical assistance, capacity building,
and/or online organizing. For those who have noted and respected our work, I'd
ask you to look at our capacity struggles as well as our successes as useful
data about the need to have strategic alliances and resources to stabilize efforts
over the course of years, allowing activists to work together with support and
a sustainable home for ongoing campaigns and flexible networks.
In the near term, state-level and regional efforts--providing
training and support for new and longtime leaders--need to be scaled up in
partnership with national initiatives. We can leverage interest in the 2012
International AIDS Conference (AIDS 2012) in Washington, D.C., and the
presidential election of that year into resources for leadership development, political
education, and on-the-ground field organizing. But we also should reap the
benefit of skilled facilitation and strategic support for healthy collaboration
to ensure that passionate and opinionated individuals and organizations in our
movement are best able to build our collective power in the coming years, and
to allow new leaders to emerge for the fight that will continue long past the
conference and election.
And fundamentally, we need to continue the fight for the
very basics of HIV prevention, such as condom access and funding for syringe
exchange, that remain out of reach for many.
We must amplify the fight against the social drivers of HIV
in our country, like mass imprisonment, lack of safe and affordable housing,
and LGBTQ marginalization.
And we should
challenge ourselves across and beyond the HIV sector--whether people living with
HIV, prevention providers, public health advocates, funders or cogs in the
wheels of struggling public systems--to bridge the now-artificial distinction
between treatment and prevention and aim higher for cross-cutting efforts that
have a shot at reaching population-level success to reduce HIV incidence and
We must also use the momentum of the NHAS and the upcoming
spotlight on the U.S. epidemic at AIDS 2012 to ensure that more and better
coordinated resources reach, and are accountable to, the populations most
affected by HIV in our country: gay men, other MSM, and transgender people of
all races and ethnicities; and people of color of all sexual orientations.
We need to continue the fight because HIV prevention does work.
The basic HIV prevention package--including counseling,
access to condoms and sterile syringes, and STD treatment--has helped and
continues to help many people avoid infection. Its success has actually made it
harder to get results from efficacy
studies of additional or alternative prevention interventions, since the
systematic inclusion of the basics in the placebo arms has often meant the
overall infection rate in trial participants declined substantially.
We have never had a
basic, solid, comprehensive foundation of HIV prevention in our country
upon which to build more innovative solutions or combination approaches.
Notably, it was just this past year that the CDC released a powerful and clear
set of data and recommendations on condoms as a structural intervention in HIV
prevention. Not just an individual intervention, where one person chooses or is
able to use a condom, but a structural intervention,
meaning that overarching civic structures can and should make condom access a
priority (as has been done in New York City).
In addition, most
students and young people never get fully comprehensive sexuality education.
There is still no data at all about whether or how sex ed is protective or
helpful for LGBTQ youth, and abstinence-only programs still spread
misinformation on the public's dime.
These days, the basic prevention package should also include
seamless access to postexposure prophylaxis (PEP) for serodiscordant couples
and those who have a risky encounter and/or self-identify as at high risk for
HIV acquisition, even as we puzzle out how to best move forward on interpreting
and implementing initial PrEP results. While there are longstanding public
health service guidelines on PEP, actual local programs to get it quickly into
the hands of those who need it are rare.
That's why it's encouraging to see that a 12-city expanded
HIV planning initiative that's one of the first cross-agency offerings out of
the NHAS box--Enhanced Comprehensive HIV Prevention Planning and Implementation
for Metropolitan Statistical Areas Most Affected by HIV/AIDS (ECHPP; http://blog.aids.gov/2010/10/national-hivaids-strategy-working-across-agency-lines.html)--mandates
"PEP access for populations at greatest risk" as one of the required
Of course, we could hope that syringe access could become
more reliably a part of the basic package, now that the federal funding ban has
finally been lifted. But two major barriers remain.
Sadly, the NHAS perpetuates Bush-era bias against harm reduction, in a time
in which those on the front lines believe we could virtually eliminate HIV in
injection drug users through concerted, systemic efforts. For example, the
ECHPP doesn't even list sterile syringe provision as a "recommended"
intervention, much less require it (though it notably highlights a brief
alcohol screening/intervention for HIV positive and high-risk people that's
seen some success in New York). Even if many of these municipalities are
already committed to sustaining syringe exchange (which we cannot count on in
this economic climate), the absence of these words in the intervention list of
this much-publicized new initiative is chilling.
And there's just not likely to be new money for HIV
prevention federally (and much less money given recent and pending cuts at the
state and local levels.) This probably means that federal funds must be taken
from something else in HIV prevention in order to be redirected to syringe
access, setting up competition between different camps or constituents in HIV
prevention. While this could and should provoke healthy conversations about the
most vital interventions in the current era, it's not an easy process,
especially while our organizations and constituents are battered by economic
Clearly, it's not just syringe access that's threatened by
budget woes. The now-worldwide recession is not likely to disappear any time
soon--and if/when it does, there's nothing guaranteeing that funds will flow
into the path of justice and public health rather than into the pockets of the
banks and corporations that are steering much of the decision making around the
This is a challenge to us on multiple levels. It's not only
harder to find the city, state, federal, and private funds to implement the
best strategies of the NHAS and push for much needed investments in HIV
prevention, treatment and care. Those hardest hit by economic turmoil are those
who are or will be put in harm's way and made more vulnerable to HIV. The CDC
has now acknowledged that poverty is
a major driver of HIV in heterosexuals, and as the number of impoverished
people goes up, we could guess that HIV incidence will as well--and not just in
straight people; poverty jeopardizes the health of all.
Even in this economic downturn we are finding potential
innovations in prevention, like PrEP. But we must use these breakthroughs to
inspire us to find ways to confront and overcome, rather than reenforce,
longtime and persistent health disparities based in economic, racial, and
social injustice in order to ensure that interventions reach all people who could use them.
So we need to also continue the fight because in order to
prevent HIV; we need prevention justice.
During CHAMP's lifetime, we launched and promoted an HIV
prevention justice movement--one that will be sustained and expanded, in part,
through the HIV Prevention Justice Alliance (HIV PJA; http://www.preventionjustice.org/)
as it moves forward with its two other cofounders, the AIDS Foundation of
Chicago and SisterLove. Prevention justice asserts that advocates for HIV
prevention must join in common-cause struggles for social, racial, and economic
justice, and that human rights are essential in furthering our fight against
The HIV PJA has
identified three key social drivers as major contributors to stubbornly high
HIV incidence rates in the United States: shortage of stable, safe housing
access (which is a marker of economic injustice), mass imprisonment
(particularly of people of color), and the marginalization of LGBTQ people.
As we move forward in coming generations, we must twin our
efforts to combat the proximate, or
immediate, causes of HIV, such as sex without condoms or syringe sharing, with
an ongoing commitment to the distal
causes that determine relative vulnerability or resiliency against HIV, such as
poverty and discriminatory policies, that are the focus of HIV prevention
For example, by joining efforts to fight for fair housing
for all people at the local level, we bring the strength and passion of the
HIV/AIDS community to a human rights struggle that is concretely tied to HIV
prevention, treatment, and care. And when we do so as people openly living with
HIV and their allies, we create visible space for others to come out, and
that's also a good, grassroots way to combat HIV stigma.
CHAMP and others have worked assiduously to draw attention
to the reality that gay men of all races and ethnicities are the largest group
of those infected in the United States, with the highest rates in black gay
men, and the only group in which incidence rates continue to increase. Thus it
can come as a shock to some that efforts to end LGBTQ marginalization are often
at a distance from the HIV/AIDS community.
Data keep coming out about how events early in the lives of
queer people--like whether or not we are accepted by our parents, or to what
degree we are targeted for bullying in schools--are formative issues that set in
place a cascade of vulnerability or resiliency for a lifetime of health issues,
including substance abuse and intimate partner violence as well as HIV/AIDS.
And groups like Queers for Economic Justice (http://www.q4ej.org)
have challenged the AIDS community to recognize the distinct and compelling
challenges faced by low-income and poor LGBTQ people that draw our attention
right back to core social drivers like poverty, housing, imprisonment, and
Fortunately, the NHAS explicitly states that we will never
overcome HIV in the United States if we do not deal with the epidemic in gay
men. But it remains to be seen if resources truly shift in a smart and
sustained way to address the prevention needs of gay men (both HIV-positive and
HIV-negative) across the lifespan--and if the HIV/AIDS community will bolster
important justice efforts for the liberation of LGBTQ youth and adults that
need to go way past issues of marriage.
We know that success in struggles for true justice and human
rights do not happen overnight. These sorts of realities--despite encouraging
news on the biomedical prevention front--make it clear that HIV will probably be
a health and political challenge well beyond our lifetimes.
Moving forward, I think we should be honest that it's very
likely that we are talking about a fight that will last multiple generations.
While we may be able to drastically decrease HIV rates, we are likely to see
sustained transmission in marginalized communities as well as the need for care
and treatment in the absence of a cure for some time to come. (As an aside, the
reemergence of campaigns to fight for a true cure for HIV are encouraging and
vital as a counter to any belief that its acceptable to assign people with HIV
to a lifetime of expensive and non-benign treatment.)
It seems increasingly
disingenuous to state that the epidemic is fueled by longstanding, complex
problems like racial injustice, homophobia, gender bias, and poverty, but then
also assert that we could "end AIDS" in five or ten years if we just had enough
We might want to look at the vision of groups like
Generation Five http://www.generationfive.org/), an
Oakland-based initiative whose mission is to end childhood sexual abuse in five
generations, and consider the following challenge: How would we fight HIV/AIDS
in the current time if we both want to move forward to improve things today,
and put things in place so our descendants can further the fight in their
The provisions of the Affordable
Care Act do hold some promise for near-term resources for HIV prevention. he
act's Prevention and Public Health Fund contributed some $30 million to HIV
research and prevention in fiscal year 2011, and is (hopefully) the source to
pay for the implementation of the 12-city plans in fiscal year 2012, if it
survives conservative attack. And the fund is slated to grow each year, without
the need for annual appropriation battles.
In addition, the planned massive
expansion of health care and medication access as many of the major provisions
of the Affordable Care Act roll out in 2014 will increase access to care for
many people living with HIV. This should spur innovative and collaborative
planning to scale up prevention resources for people living with HIV, and the
integration of PEP, PrEP, and testing into a more holistic vision of HIV
prevention efforts that bridge behavioral support with treatment and biomedical
But it's not 2014 yet, and
problems abound as AIDS drug assistance program waiting lists grow, immigrant
populations are increasingly distanced from care with little hope of abatement
from anything in health care reform, and the Affordable Care Act remains a big
target for old-school conservatives and Tea Party leaders alike.
As we seek to survive to 2014 and beyond, we can acknowledge
that this is a long-term struggle and bolster our strategies for furthering
HIV-specific advocacy, marshaling the passion of the HIV/AIDS community as a
powerful part of broader coalitions and collaborations to confront the social
drivers of the epidemic while we confront HIV stigma through our very
participation in these broader campaigns.
Despite cuts that are slimming the HIV sector and public
health infrastructure, there are people ready to join and sustain the fight for
HIV prevention justice.
We can and must usher in a next-generation approach to
prevention that breaks down silos of treatment, care, behavioral interventions,
mobilization, and research in order to innovate, evaluate, and expand
combination interventions deeply rooted in community that marshals the
strengths of large health care and public systems.
We can and should move forward on initiating no-cost,
low-cost, or independently funded DIY and grassroots sex ed and HIV prevention
that can be as down and dirty and explicit as it needs to be--without worrying
about the political climate that can make funders balk.
Oh, there's so much we can and should do. But no matter
what, we need strategic approaches that bring our best ideas together to give
us a shot at succeeding. I feel lucky to have been able to be a part of CHAMP,
which helped so many people turn frustration into power, and hope that the
ideas, actions, and national activist networks that we helped to inspire will
resonate for some time to come.