2015 AIDS Philanthropy Summit Opening Address

Welcome to the AIDS Philanthropy Summit.  This year’s theme is restoring urgency and renewing commitments. We chose this theme because of where we find ourselves now, in the fourth decade of this struggle.  The first decade was one of raising alarm bells about a growing crisis that was killing vital young people, our friends, lovers and family members. In the second decade we realized that the crisis was a global one and expanded our focus accordingly.  We also began to see our efforts bear fruit, as resources began to scale up. By the end of the third decade, we’d finally identified the tools to end the epidemic, but began to encounter complacency in finding the resources to implement them.

It is that complacency that we must battle as fiercely as HIV itself.  If we continue on our current path, I fear that the progress we have all worked so hard to achieve through 30 years of investment – will be stalled, and the momentum to move forward and really conquer this disease will be lost.

Over the next day and a half, we will provide data and tools to bolster efforts to restore the urgency needed to attain renewed commitments

Together, I believe we have three key questions we must address:

1.     How can we make sure there continues to be adequate resources to end AIDS?

2.      How can we best align resources for maximum impact?

3.     How we can catalyze a sustained collective philanthropic response to the root causes of the epidemic?

First, how to ensure adequate resources to end AIDS:

As advocates for AIDS funding, we face some challenging misconceptions about HIV and the resources needed to address it.

We’ve all heard people ask “Isn’t AIDS over?”, and heard from colleagues in other areas who think HIV gets more than its fair share already.

But we know that there are 38 million people infected worldwide, half of whom don’t know they’re infected.  This continues to drive the number of new infections to outpace those going  onto treatment  So AIDS is not over.  In fact, to get ahead of this curve, a huge scale up is required.

But what is philanthropy’s role and how can philanthropy be most effective?

Tomorrow you’ll hear more about FCAA’s resource tracking data, but here’s a spoiler alert:  it reveals that philanthropy accounts for 2% of global resources for HIV ($618 million in 2014).  It accounts for 1.7% of the $35 billion UNAIDS estimates is needed.

Clearly philanthropy cannot bear the burdens of providing treatment and prevention services at the scale needed. But our investments can and have been leveraged brilliantly to fund advocacy that enables civil society to hold governments accountable for an appropriate response.

But what does an appropriate response look like? UNAIDS tells us that we have a 5-year window to scale up the response to HIV by 76% if we are to realize hopes of bending the curve of the epidemic toward an end.

This goal, just like every goal before it, simply cannot be met without advocacy.  Remember, it was advocacy that hastened getting drugs to market that prompted the US government and other bilateral contributions, and created the Global Fund.  Advocacy has driven every step of progress we have made against HIV.

With that in mind, FCAA wanted a better picture of what resources were available to fund this important work.  We know that governments aren’t eager to fund their critics, so private philanthropy is the primary funding source for this work.

Here’s another spoiler alert:  Our latest resource tracking data reveals some pretty sobering numbers: only 11% of philanthropic investment in HIV was spent on advocacy in 2014.  That’s 11% of the 2% of total resources, or about $93 million. It is our most critical investment and quite frankly, it is getting nowhere near the resources it needs.

In response, FCAA convened a meeting of the world’s top public and private funders in London in October.  The first day was spent with private funders meeting with activists and representatives from PEPFAR, DFID, the Dutch Foreign Ministry and the Global Fund, to explore how advocacy has fueled the demand for public resources, and to better understand and achieve mutual priorities.

And we heard from activists about the greatly diminished state of current advocacy infrastructure, which is forced to drive much of its work with smoke and mirrors in the absence of a mobilized community.

On the second day, the philanthropic representatives met privately to speak candidly about the challenges of funding advocacy, sharing tools and strategies, and beginning to build the case for an increased philanthropic investment in advocacy.

Concerns were explored that advocacy is too hard to measure and that it doesn’t give the same warm fuzzy feeling as funding direct services.  But examples were also shared that countered that common narrative, including an example of advocacy work funded by the Elton John AIDS Foundation (EJAF) in London.

EJAF UK had always maintained a focus on direct services, but was able to convince their board to make an investment in the efforts of STOP AIDS (a UK advocacy group) that resulted in a £1B investment from DFID in the Global Fund.

The resources leveraged ended up saving 300,000 lives; if the same grant had been made for direct services, it would have saved only 270.  The difference between 270 and 300,000 is pretty easy to measure, and saving those additional lives is pretty easy to feel warm and fuzzy about.

It is important to note that advocacy wins don’t happen in a one year grant cycle, and different metrics have to be established for measurement and evaluation of advocacy work.

But resourcing advocacy efforts isn’t just about how much we spend on it, it’s about how we invest.

For example, we need to erase the imaginary line between advocacy and service provision.  If it wasn’t for advocacy, services would simply not exist.

But also because some of the most relevant and compelling advocacy has emerged from service providers themselves who have the firsthand knowledge about what needs to be fixed when it comes to HIV treatment prevention and care in any given setting.

Not to mention the fact that service providers have the relationships with those that need to be mobilized to demand change.

All private funding to service providers should clearly communicate the funders’ expectation that meeting the needs of those being served includes providing them with information and empowerment to be actively involved in determining their own care and advocating for their own needs.  Without mobilizing those most affected, our advocacy efforts are doomed to be misinformed and impotent.

Next: Aligning resources for maximum impact

Even if we achieve the $35B goal set by UNAIDS, we won’t succeed if we’re not funding the right things in the right places at the right times (to borrow a line from the recently updated US National HIV/AIDS Strategy).

And as private funders it’s always been our role to ensure that alignment of resources ensures a focus on the needs of the most vulnerable people and the most impacted places.

In the US, that means first understanding and addressing the needs of young black MSM in the south.

Even with the largest share of resources in the world to address our domestic epidemic, young gay black men in southern cities are not learning their HIV status until they’re diagnosed with opportunistic infections, conditions not even being seen in the developing world.  As we all know, late diagnosis results in worse health outcomes and drives new infections.

THIS is why FCAA has launched the Southern Funders working group, bringing together the top funders in the US south three times already this year to think collaboratively about how they can coordinate efforts to strengthen existing leadership, and to ensure a pipeline of new leaders that reflect the populations most impacted.

Additionally, they plan to work with grantees to improve communications capacity and to help them build and participate in coalitions, which are more likely to affect change.

Meanwhile in New York, San Francisco and other US cities, HIV rates are dropping precipitously –creating a chasm in the response.

To address this, FCAA was happy to collaborate with amfAR just last month on a White House meeting designed to identify best practices in achieving the goals of the National HIV/AIDS Strategy and to ensure that progress is achieved more evenly across the country.

And, while there is still work to do in driving resources south, I have to say that the primary driver of these disparate outcomes is varying political will – such as states refusing to expand Medicaid.

We must create a climate where it is intolerable for governors to put the lives of their citizens second to political games.

With political will now THE primary barrier to success, our grantmaking must evolve to be responsive… more on that in the keynote to follow.

Globally, we’ve done an incredible job at greatly reducing mother-to-child transmission, but now we must expand our focus to the entire life span of women and children.

All women’s lives count, regardless if they are of childbearing age or if they choose to have children.

The children they carry must stay negative as they move into adolescence and become sexually active.  Those who do become infected need equal access to life-saving interventions. I hope you plan to stay for tomorrow’s closing plenary – Seeking an AIDS Free Generation: Youth & HIV – that will explore the urgent need for action to address HIV in adolescents.

Women’s rights issues also continue to fuel the epidemic– such as lack of access to education and property rights, gender based violence (which escalates among positive women), mothers who have to care for families while they are too sick to care for themselves, or grandmothers caring for dozens of children in their old age.

The inequality that places unbearable burdens on women’s shoulders need to be major priority for all of us.

I’m happy to report that just this morning FCAA expanded our EMTCT Workgroup to become the Women and Children’s working group — to help ensure that a broader focus on the needs and issues of women and children.

Even with an increasing focus on vulnerable populations, one group that continues to be overlooked is seniors.  By 2020, over half of all people living with HIV in the US will be over the age of 50.  This will create new considerations for service needs, and accordingly for our grantmaking.

To help drive focus among a broad range of grantmakers on this issue, FCAA partnered with Grantmakers in Aging, Grantmakers in Health, and Funders for LGBTQ Issues to include hundreds of funders in a webinar on HIV and Aging.  We hope that by highlighting these overlapping interests of this diverse set of funders, we will foster understanding and engagement from a broader cross section of philanthropy.

Finally, how to catalyze a sustained philanthropic response to the root causes of the epidemic

As we all know, the human rights abuses, social justice issues and inequity that drove HIV into a global pandemic existed long before HIV came along.

HIV has served as a magnifying glass through which to examine those issues and has built a global infrastructure to respond to them.

I suspect that most of us who work in HIV come to this work because of a deep commitment to these larger issues.

For those of us who have lost people to this epidemic, the only sense of justice we can hope for is that those lives not be lost in vain, that in working to end AIDS, we are also working to end the conditions that fuel it.

To this end, FCAA spends a lot of time and energy partnering with our sister affinity group colleagues who are also working on these “root cause” issues.

Two great examples of our partners in this work are Funders for LGBTQ Issues and the International Human Rights Funders Group.

Collaborating with Funders for LGBTQ Issues this year, FCAA helped to produce two briefings on LGBTQ health.  Together, we are working to drive a health focus among LGBTQ funders and an LGBTQ focus among HIV grantmakers.  Only by going more upstream in our approach can we hope to mitigate the social determinants of health among young, black MSM and trans populations.   To learn more about going upstream on these issues, be sure to attend the session tomorrow, hosted by Ford, EJAF and the Arcus Foundation.

More broadly on global human rights issues, FCAA has been thrilled to work with IHRFG to  co-host the Human Rights and HIV Funders Working Group which seeks to build collaboration between HIV and human rights funders around a shared agenda.

Together, we are trying to protect the human rights of groups most affected by HIV, — no matter whether you approach the work from an HIV or a rights frame.  This group is working to identify funding to support urgently under-funded human rights groups in protecting the rights of key affected populations, to share evidence of the health outcomes of human rights work and to help the Global Fund to implement its human rights strategy.

Just this morning this group explored the incredible barriers criminalization creates in our work.  By criminalizing people with HIV and key affected populations, we drive them underground and reduce uptake of testing and prevention strategies and adherence to treatment, besides violating their human rights and dignity.

I believe to be effective as Funders Concerned about AIDS, we must also be funders for LGBTQ issues.  We must be grantmakers in health, international human rights funders, and funders for reproductive health and rights. 

At Funders Concerned About AIDS, we are committed to working at these critical intersections and tackling these larger issues head-on. We do this with the incredible support and partnership of our affinity group colleagues in these areas, because we are confident that the only path to victory is a shared one.

We hope all of you will continue to stay with us or join us on that path.