Highlights from the 2018 AIDS Philanthropy Summit: Catalyzing Communities

By Juliet Glassroth December 20, 2018

“Relationships are the glue that bind communities together and build bridges between them.”

-John Barnes, Executive Director, FCAA

FCAA Executive Director John Barnes began the 2018 AIDS Philanthropy Summit with a call to action to build bridges of understanding and respect with one another, and to recognize, trust and leverage community wisdom in favor of preconceived notions. He encouraged attendees to establish a “sacred space” for the duration of the convening in an effort to counter the selfishness, ignorance and greed so prevalent in the broader ethos.

The two-day agenda that followed these remarks featured 50 speakers from 15 countries who represent, support, engage and advocate for communities at the frontline of the HIV and AIDS response. The objective for our time together was to discuss the political and financial environment in which we are currently operating, identify strategies that address the challenges we face, and set out a path for sustainability in the response. Below are just a few of the highlights, key themes and proposed actions that emerged from our discussions.

COMMUNITY IS…

We began the convening by identifying some of the many ways “community” is defined within the HIV/AIDS fight. Regardless of the specific definition, it was clear that communities must be at the center of our work.

THE CURRENT ENVIRONMENT

Despite our absolute agreement in the value of communities, the current political environment leaves us with many challenges, which must be addressed for our work to continue effectively. The Summit’s opening plenary and concurrent sessions zeroed in on some of key threats on the horizon, namely the Global Gag Rule and continued efforts to dismantle the Affordable Care Act.

The Global Gag Rule is undermining the human rights and autonomy of activists. It also has a significant impact on our ability to effectively fight HIV and AIDS. Marginalized communities — such as LGBTQ communities, sex workers and young people — are the most impacted. Clinics that provide family planning services have been forced to significantly reduce services or even close altogether. This leads to people who are HIV positive, particularly young women, to remain undiagnosed.

Nearly 30% of primary implementing partners have had to scale back services due to the Global Gag Rule. The policy also impacts sub-partners as organizations that accept U.S. government money in any way, even through an intermediary, are significantly constrained. In addition, there has been a chilling effect on advocacy as the policy prevents gagged groups from collaborating with those that are not.

However, with no guidance as to how to apply the policy, organizations are understandably confused. Some are being over zealous in an effort to avoid running afoul of it. In addition, many organizations mistakenly believed that they could not document the policy’s impact. They can and should be encouraged to do so. In fact, it is critical to document how harmful this rule can be so that the data can be used for advocacy should the U.S. consider withdrawing the Gag Rule in the future.

To attempt to clarify some of this confusion, several organizations—including amfAR, CHANGE, PAI and Planned Parenthood—hosted a booth at the Summit to provide comprehensive information to donors about the policy, its implementation, and how it may impact access to HIV/AIDS prevention, care, and treatment.

Here is what funders need to know and how they can help manage in the context of the Global Gag Rule:

  • Hold your ground. Do not shy away from the ways in which you would otherwise allocate your resources.
  • Move quickly and responsively.
  • Help grantees to develop strong progressive alliances. Create spaces in which grantees can meet each other to create solidarities, relationships and coalitions.
  • Know the extent to which the limits can be pushed. And push them!

The Global Gag Rule is not the only challenge our community is facing. In the U.S., continued assaults on the Affordable Care Act threaten meaningful access to health care for people living with HIV and other low-income and vulnerable populations. Funders can help by:

  • Supporting innovative efforts, like those of AIDS Foundation Chicago, to rewrite the narrative on Medicaid through social media.
  • Working with advocacy partners to protect and promote access to high-quality and affordable health. 

FUNDING COMMUNITY BASED APPROACHES

The launch of FCAA’s new report, Last Mile Funding: Improving Philanthropic Funding of Community Action on AIDS, provided a platform for dialogue around improving funding for the community programs and services we know work. The case for funding community-based organizations is strong as they:

  • Are born out of communities they serve;
  • View an individual as a whole person, not beneficiaries of a singular outcome;
  • Can navigate the local eco-system in which they are operating; and
  • Are agents of change.

In addition to the report, two plenary sessions explored best practices and resources available to support community-based action on HIV and AIDS. These discussions highlighted actions funders should consider including:

  • Moving from including affected communities to centering them, “The difference is that the latter literally puts them and their needs front and center,” Rye Young, Third Wave Fund
  • Making longer-term investments and supporting learning in order to power sustainability.
  • Enabling the communities you fund to learn from one another.
  • Funding key populations such as sex workers: “Sex workers bridge so many other groups, including religion. And it is work; it’s here to stay so we’ll be better if we work together,” Flavia Kyomukama, WONETHA, Uganda
  • Allowing communities to maintain agency through participatory grantmaking:
    • “If we [black, gay men] are not at the table, we’re on the menu” – Larry Scott-Walker
    • “Trans women of color need to be centered in HIV work. Specifically, Latina trans women who are undocumented, and black trans women”- Cecilia Chung, Transgender Law center
  • Funding communities directly and building their trust: “I have been HIV positive for the past 19 years, and when I talk to my community about why you need to test and adhere to treatment, they listen to me. Our community listens more to their fellow community members.” – Daisy Nakato, Uganda National Network for Sex Worker Organisations
  • Thinking beyond funding for biomedical services to include:
    • Holistic, family-centered packages of support that address all the ways HIV impacts communities: “To funders, I say we need a more holistic solution. In particular, we need social protection.” – Clara Banya, International Community of Women Living with HIV and Ambassador for Coalition for Children Affected by AIDS
    • Investing in a child’s early years is critical. The most effective programs and services will seek to improve both HIV outcomes and development needs.
    • Advocacy, which is one of the most important levers for influencing policies and mobilizing resources: “Investment in changing policies can make a difference to ensure that programs outlive surge investment periods.” – Lauren Marks, Office of the U.S. Global AIDS Coordinator
    • Evidence gathering: “There are expensive studies that show community based approaches work. CBOs have been doing this work a long time but don’t have funding to document it. Can we bring these two worlds together?,” Lee Waldorf, Stephen Lewis Foundation.
    • General operating grants: “We prioritize funding organizations who center intersectionality. Having the option for general operating support grants allows them to continue doing work that is probably quite intersectional as opposed to changing their parameters.” – Melanie Powers, AIDS United
  • Being specific with what you want to fund and be clear with language. If you want to fund a global network avoid using the term “community” as a generic catch-all phrase.
  • Using a bottom-up approach:

    “Look at the needs of communities and then follow with the money. Let us live!”

    -Devanand Millie, Guyana Trans United, Executive Director of the Washington AIDS Partnership and Chair of FCAA’s Board

  • Considering Rapid Response Funds, which support grassroots frontline community efforts and ensure that no population is left behind. “The mechanism is flexible and ensures that we have funds to do what mainstream donors may not fund,” Devanand Millie, Guyana Trans United
  • Most importantly, don’t underestimate the power of love! It inspires collaboration, quality and excellence, diversity and inclusion, collaboration. “If you love everyone, you ensure everyone gets to decide. Love fuels you to do audacious and courageous things well!” Mutisya Leonard, the East African Sexual Health and Rights Initiative

“If you do your work well, money will eventually reach those it needs to reach. But power doesn’t trickle down. That requires changes.”

–Nadia Van Der Linde, Red Umbrella Fund

Funders can be more intersectional in terms of funding community-based approaches by:

  • Being more flexible and less prescriptive: “The non-nimble base is covered,” Matt Greenall
  • Taking risks.
  • Acting swiftly and responding to emergencies.
  • Including those with lived experiences that are different, but relevant.
  • Hiring and retaining a diverse staff that reflect the communities you fund: “Hire people from the communities you serve; people who will challenge you. We’ll all be better for it!” – Melanie Powers, AIDS United

“Intersectionality: if you want to support me, then support all of me. Honor all that I am.”

–Larry Scott-Walker, Thrive SS

HARM REDUCTION: THE HIV AND OPIOID SYNDEMICS

FCAA devoted the closing sessions of the Summit to discuss sustainability. One of the most urgent challenges that we must address in order to ensure that we maintain and, in fact, do not roll back progress is the lack of funding for harm reduction programs.

Such programs, which have been proven to be effective, are greatly needed in the U.S., where the opioid epidemic has led to increased risk of spreading HIV among people who inject drugs (PWID). Yet, funding remains inadequate in this country and internationally. According to a presentation from Harm Reduction International, funding for harm reduction efforts in low and middle-income countries have stalled at $188 million, just 13% of what UNAIDS estimates is needed for an effective response. In 2017, less than 3% of HIV-related philanthropy supported PWID.

There is no question that the HIV and opioid epidemics are inter-related. The current crisis in the U.S. is more appropriately referred to as a syndemic – multiple, overlapping epidemics. There are also many similarities in the failures of inaction that allowed both epidemics to initially gain ground:

  • Insufficient funding.
  • Blaming the victim. “ADDICTION IS NOT A CHOICE. It has to do with biology, environment and exposure. And we need appropriate evidence based treatment,” Shawn Ryan, Brightview Health
  • Stigma from healthcare providers.
  • A slow government response.
  • A failure to focus on effective interventions. “Donor withdrawal presents particular risks to sustainability of harm reduction programming where governments aren’t set up to support community based services,” Catherine Cook Harm Reduction International

“We need to acknowledge the structural violence in existing healthcare systems and work to address them.”

–Tanagra Melgarejo, Harm Reduction Coalition

Approaches for funders to effectively address the syndemic:

  • Identifying and target areas hardest hit such as the 220 U.S. counties identified by the Center for Disease Control as vulnerable for HIV and HCV, and upper middle-income countries, which are home to 55% of the world’s population of PWID.
  • Providing flexible support, and resources for advocacy, community building and education.
  • Remembering that critical direct services and supplies are also woefully underfunded. Determine your grantees needs for basic supplies and services, such as syringes or overdose reversal/Naloxone and peer-to-peer distribution programs.
  • Considering what non-funding roles — such as convening stakeholders and/or grantees — your organization could play as part of the opiate response.
  • Supporting critical research to ensure access to data-based evidence and programming.

A RACIAL JUSTICE FRAMEWORK FOR HIV

Recognizing the rich history and powerful legacy of leaders of color in the HIV movement, FCAA concluded the Summit with a discussion of racial justice. This conversation first addressed what racial justice looks like in organizations, agencies, and funder practices. It then turned to asking how we, as a community, can better align with a racial justice framework. Because we must, as Venita Ray from Positive Women’s Network-USA explained, “Acknowledge that racism still exists and still impacts communities of color. It is still at the root of the HIV epidemic. Racial justice is not about treating symptoms, it’s about fixing the system.”

There are barriers of which funders should not only be aware, but which they can actively work to address:

“One big barrier is saying that you need a college degree or however many years of experience in formal work to make it into leadership positions. All their years of lived experience need to count for something.”

–Cecilia Chung, Transgender Law Center 



Guidance for funders included:

  • Going beyond a philosophy of diversity to truly give ownership and power to people with histories of discrimination and exclusion: “We need to go past cultural competence to cultural humility.” – Larry Scott-Walker, Thrive SS 

“Black and brown people could be placed in certain roles or places in these organizations. The power and the decision-making needs to be equitable. Community-led is not the same thing as community-based. It’s only window dressing if we don’t have equitable representation in positions of power.”

–Venita Ray, Positive Women’s Network-USA


  • Specifically funding organizations that incorporate a racial justice lens.
  • Understanding that the antidote to racism is engagement: “Sometimes getting rid of your prejudice can require going into the community, showing up every day, inviting people over for dinner.” – Marco Castro-Bojorquez, HIVenas Abiertas 

  • Making resources more accessible to the communities that you serve. Any projects for the community should be led by the community: “In order to fund the right work, we need to fund the right people. Even if those people may lack the skills, we need to support them.” – Cecilia Chung, Transgender Law Center 

  • Recognizing that organizations may work in nontraditional ways. Evaluations need to be changed to reflect the realities of the communities we fund. Think outside the box when measuring impact: “Sometimes quality improvement can’t be measured by numbers. We need to be more flexible at how we look at narratives of success.” – Cecilia Chung, Transgender Law Center
  • Don’t be afraid of funding community-organizing work – it’s important and builds power!
  • Giving voice back to the community by empowering more people to speak through storytelling.
  • Involving not just people living with HIV, but their families in the work: “Families of people living with HIV are the most underutilized resource in this work.” – Marco Castro-Bojorquez, HIVenas Abiertas

If you’re interested in hearing more from presenters and attendees, be sure to take a look at some of the social media conversation in this curated list.

You can also find presentations and resources from the Summit online.