The Red Umbrella Fund (RUF) is a new global grant-making initiative designed to strengthen and ensure the sustainability of the sex worker rights movement by catalyzing new funding specifically for sex worker-led organizations and national, regional and global networks. The RUF will be governed by an International Steering Committee – comprised of seven sex workers and four donors to the Red Umbrella Fund – that will provide strategic policy and programmatic oversight. The RUF hopes to make at least US $700,000 in grants in the first year.
In the following interview, FCAA discussed this new and innovative collaborative funding model with members of RUF’s Interim Steering Committee Shari Turitz, Director of Programs, Public Health Program, Open Society Foundations (OSF); and Ruth Morgan Thomas, Global Coordinator, the Global Network of Sex Work Projects (NSWP).
Q. Can you tell us about the history and structure of the Red Umbrella Fund?
RMT: RUF came about through ongoing discussions between the staff at SHARP-OSF (the Sexual Health and Rights Project at OSF) and NSWP representatives about the difficulties that sex worker-led organizations have had in attracting funding, and the need for a fund to specifically support sex worker human rights and the development of sex worker-led organizations. Those initial conversations have carried forward into the structure of the fund, which is a partnership between donors and sex workers from various global and regional networks. The majority of the members of RUF’s governing body - the International Steering Committee (ISC) and the technical review panels - will be comprised of 51% sex workers who will bring their life experience to that process.
The remaining will be composed of some donors and others that can be useful voices in the development of this fund over time. It’s also important to note the diversity of the sex workers involved. What we have done consistently is ensure their representation not just regionally but also across genders. We’ve included male and transgender sex workers who often get forgotten when we talk about these issues. It’s important that the diversity reflects the reality of those main groups engaging in sex work.
ST: An ongoing challenge that we (OSF) have faced is feeling like one of the lone funders of organizations run by and for sex workers advocating for human rights. We did a report in 2006 that found that the five top funders supporting work with sex workers in 2005 contributed less than a total of one million dollars. And much of that was support from OSF[i]. We felt a real interest and need to partner with other funders, and the sex worker community, to create a mechanism to help bring new money to the table as well as enrich our thinking and funding practices. The idea [for a formal structure] emerged during a seminar[1] in December 2008 where sex worker representatives, funders, and other advocates gathered to discuss sex work and trafficking. That was the first platform where like-minded donors, concerned about the conflation of sex work and trafficking, came together and started talking about the very difficult issues facing sex worker organization
RMT: That was the pivotal point in RUF’s “birth” - sex workers saying that whilst we recognize that trafficking is important, particularly in relation to human rights work, there are many other human rights violations that sex workers experience on a daily basis. There was a beginning of an understanding that we need to broaden funding of sex worker organizations beyond the narrow focus of HIV, which is where many of the sex worker groups had received funding, and beyond the narrow focus on trafficking alone.
Q. What is RUF’s current status?
ST: Mama Cash (the oldest international women’s funds worldwide, and long-time funder of sex worker rights) has been identified as the administrative host of the Fund after a competitive process managed by the ISC. While Mama Cash has been a partner since the outset, their selection was based on meeting the criteria outlined by the ISC such as funding flexibility and a demonstrated experience in funding on sex work. Mama Cash has started the recruitment for a Fund coordinator to be located in their office, and who will work closely with the ISC.
Q. Can you tell us about the current donor partners and your resource mobilization plans?
ST: The RUF has been a process whereby at least 10 donors have participated in its design. As such, as soon as Mama Cash was able to receive funds there were contributions in place from donors that had been involved from the outset. This diverse group of donors, including Global Fund for Women, Levi Strauss Foundation, Oak Foundation and Comic Relief, participated in the process that led to the launch of the RUF. Other donors including AIDS Fonds, American Jewish World Service and HIVOS actually sat on the ISC. We’re at the beginning stages of broader donor outreach. The future resource mobilization efforts will be very much a partnership between the ISC, the donors currently involved, and Mama Cash as the coordinating entity.
I think we’re finding that we have come upon an idea whose time has come. Donors are compelled by a fund whereby the community is intimately involved in the design, as well as the main power holder in the grant-making decisions. Finding a coalition of strong, like-minded funders is incredibly rewarding and it’s just the beginning. These partners have enriched our thinking and in turn improved our own grant making. At the same time, the RUF supports our approach globally on these issues – such as the need to address the negative consequences of the criminalization of sex work, supporting the idea that that sex work is work, and, as a general approach, supporting the initiatives of sex workers themselves to organize and design programs for their own health and rights.
Q. What else does this collaborative approach provide funders?
ST: This can be a hard field in which to fund. To know who’s who and where the good leadership is within a population group that is often so marginalized, you have to be quite close to the ground and listening to groups to understand their needs, assets, and how as a donor you can partner with these groups.
Another opportunity is also the learning and clear communication strategies that will emerge from this initiative. We’ve already developed – with the Levi Strauss Foundation - a document that helps funders talk to their constituents, boards, and donors about this work in a way that can convince them that their organization should engage. These are difficult questions and people come to the table with very strong, often uninformed, opinions. So we hope part of our future coordinated advocacy and communications efforts will be focused on helping funders to understand the nuances of this work.
Also frankly, the field of sexual rights is quite divided and political. Being part of a group of funders speaking with a unified voice can be a safe haven for donors interested in exploring how to best support the human rights of sex workers. Many may find it difficult to access good information about sex worker rights, and only hear the perspective of those who support a criminal or punitive approach to sex work.
Q. Advocacy and building linkages will be an important aspect of RUF’s programmatic work. What new leverage will donors bring to this work?
RMT: Building the relationships and engaging in collaborative advocacy with donors will strengthen the voice of sex workers. It’s quite easy for policy makers to dismiss a small global or regional network of sex workers. But, when human rights, sexual health and women’s rights donors come together and join us in saying let’s start recognizing sex workers rights are human rights, and that sex work is work, it adds a great strength to the voice of sex workers. Working together amplifies their voices greatly.
ST: From a funder’s perspective, we do our best work when we are sure that we are responding to the most pressing needs identified by the groups we want to support. In this case, the sex worker organizations are committing through this process to help guide us in identifying the most pressing advocacy opportunities that arise for the sex work community over the next several years. As a funder, the initiative also offers a strong platform to connect other advocacy efforts. For example, at OSF, that includes work on the public health issue of police confiscating condoms to use as evidence of sex work. Clearly, this practice has a detrimental effect on sex workers’ ability to protect themselves against HIV infection and other health risks. OSF will highlight this important advocacy work at the International AIDS Conference (AIDS2012).
Q. Can you describe the four types of grants that you will prioritize for sex worker-led organizations and initiatives?
RMT: The basis of the four grant streams came directly from the feedback of the sex worker representatives that sat on the Interim Steering Committee - the experiences they’ve had on the ground, and the real challenges for sex workers to organize, and for their organizations to be sustainable.
The challenge we heard most often, from every region, was that sex worker organizations find it very difficult to access start-up funds, which then limits their ability to apply for funding from donors who require a registered group. So we wanted to be able to offer a start-up fund for small groups of sex workers trying to become legal entities. The second is that, although there are often project or activity funds out there that you can apply for, they don’t include sufficient funding or an overhead percentage to sustain the infrastructure that all organization need. What we specifically identified was for the need for groups to have multi-year, core funding to help them build their infrastructures and create sustainable organizations.
The next area we identified is that you can often go to a funder to request technical support, but that quite often means an external consultant coming in and providing advice. One of the things we know across the global network is that we have groups in every region that have been around for decades. We have Durbar (DMSC) in Calcutta, India that started in 1995 and is now a collective of 65,000 sex workers that runs its own cooperative bank. In Mali, Danaya So has been around for three decades now as an HIV and social support service that runs its own financial support services and clinics for sex workers. In Latin America you have groups like Davida in Rio-de-Janeiro that have been around for decades providing services to communities and doing local and national human rights based advocacy. What we wanted was to support peer-led capacity building and exchanges to enable sex workers to invite one of the more experienced, and importantly peer-based, groups in rather than having to turn to external consultants all the time.
Last, and incredibly important, is an emergency fund to enable capacity for immediate response to incidents such as in Macedonia where sex workers were rounded up and tested and their HIV results were published with the sex workers put on public display. This fund would allow groups to respond to those situations, get the legal advice they need, and to get someone in to help them draft briefing papers so that we can raise the profile of those incidents.
Q. Why is sustained funding for policy-related work so critical for the sex work community?
ST: Most sex work organizations only receive year-to-year funding – if they get any at all - and no core support. Most of that funding is linked to HIV prevention activities. The point of this Fund is to enable these organizations to have the space and infrastructure so that they can more strategically, and in a more coordinated way, engage in advocacy on the issues they identify as priority, including engaging on issues around criminalization.
RMT: We are also trying to tie local groups into whatever relevant national or regional work is on going. We can’t expect every organization on the ground to devote most of their time to policy work, but for me at the global level, without the participation of local grassroots groups on the ground, we wouldn’t be able to do the global advocacy work that we do. It’s sort of a chicken and egg situation in terms of achieving our long-range goals of stopping the violations of sex workers rights, and looking at decriminalization of sex work, and looking at getting sex work recognized as an occupation - all of these efforts will only succeed if we have a vibrant grassroots community. And, if we have that community engaged, we’ll be more effective in terms of advocating for the needs of sex workers, which we hope in turn, will attract more donors.
Q. What are the next steps for RUF?
ST: In terms of immediate next steps, Mama Cash will be recruiting a fund coordinator. That person, Mama Cash, and some consultants we’ve been working with, will be then putting plans in place for the launch of the first global request for proposals, as well as the RUF’s first annual convening. Mama Cash and the ISC will also start a process for naming the program committee, which will have an even higher percentage of sex worker representation. That body will be responsible for reviewing proposals and determining where the actual funds will go. We’ll be reaching out to the funding community soon to join us in this new effort.
Q. Are there any messages or questions you’d like to share with the FCAA community?
RMT: In terms of funders looking at sex work funding around HIV/AIDS, I urge people to ask: “Where is the evidence?” We often see a strong desire of people to rehabilitate sex workers, or “save” them, as some people see it; however, many of those programs actually further marginalize, violate human rights, and really need to be challenged. It’s a double-edged question: where’s the evidence for what you’re funding, and is it something that is supported by the sex workers who are the subjects of the services? This is why we’ve been so loudly been calling for sex worker led initiatives and organizations to be funded. I think people sometimes forget that sex workers are human beings, and have agency, and are capable of making decisions for themselves and don’t need people to save them. They need resources to organize, to improve their own standards of life, and to make their own decisions about their life and what they’re doing. I would ask those funders when they’re thinking about HIV/AIDS and sex workers, not to shy away from it, but also to actually think about where’s the evidence for what you’re funding, and why would you not want to actually work with the community of sex workers to organize and implement their own services?
ST: What this group of donors and sex workers has done is create an opportunity for true partnership and learning in this area of work. I think as funders, we often collaborate with one another, and talk a lot about empowerment and being responsive, and I think this fund provides a real opportunity to live that, and put our money to that ethos. It’s a very bold and innovative move, from a funding community perspective, to create a basket fund that the sex worker community will truly guide themselves.
It’s an exciting opportunity to partner with this very important community. We would like to send out an invitation that if you want to live that ethos, we welcome your participation. Join us!
According to this report, the five most active foundations funding sex work in 2005 gave less than U.S. $1 million. The majority of funding for organizations that serve sex workers came from donors involved in HIV/AIDS prevention, followed next by donors involved in anti-trafficking work. Other types of private foundations and some individual donors fund sex worker groups in different program areas that include harm reduction, women’s rights, criminal justice reform, migration, human rights, labor rights, antipoverty, reproductive health and rights, education and training, and transgender issues.
Guest Feature: We Can Wind Down the AIDS Epidemic
Following an exciting conversation during April’s Funders’ Briefing (Game Changers in HIV Prevention), and the ground-breaking results of the HPTN 052 study, FCAA has a renewed focus on monitoring advances in “Treatment as Prevention,” and what it means for the field of private HIV/AIDS-related philanthropy. In addition to working on a special session on this topic at our upcoming December Gathering (December 5-6, Washington, D.C.), we have invited a guest feature from Brian Williams, Ph.D., and Victor Dukay, Ph.D., Senior Partners, Test & Treat to End AIDS to tell us more about the “test and treat” strategy, and what recent scientific advances mean for our community.
As the HIV/AIDS epidemic enters its fourth decade, there is fresh optimism that we can ultimately defeat this scourge.
Recent studies indicate that immediate drug treatment for HIV can also be a powerful tool for prevention. This may well prove to be the exit strategy for sympathetic funders who have poured billions into HIV/AIDS research, education, prevention and treatment, but have seen little headway in stopping the transmission of HIV.
Our international consortium, Test & Treat to End AIDS (TTEA) believes that now is the time to take what we have learned about “treatment as prevention” and see if it can be scaled up in an economic and effective manner. We are advocating in Congress and with the Obama administration to support a larger, community-level study of the “test and treat” strategy that prioritizes routine testing for, and treatment of, HIV infections as soon as they are confirmed to stop the progression of the disease and to stop the spread of the HIV virus.
Since TTEA’s founding in 2010, its members have argued that the mainstream practice of administering antiretroviral therapy (ART) only when an infected person’s immune system is so compromised that he or she begins to suffer from a range of severe and debilitating opportunistic infections does little to prevent the spread of HIV. The roughly 2 million new cases of HIV reported around the world yearly are testimony to the failure of “test and wait.”
Meanwhile, funding to fight AIDS plateaued in 2009 and beyond after a sixfold increase earlier in the decade. According to UNAIDS, an estimated $15.9 billion was spent on HIV/AIDS in 2009 compared with $300 million in 1996. Private philanthropy (among U.S. and European funders) directed towards HIV/AIDS represented only 4% of those available resources in the same year. With dwindling or at best stable resources to devote to the AIDS fight, TTEA believes we must break free of entrenched approaches and evaluate new strategies to stop the transmission of HIV.
While the scientific community is debating at what CD4 level ART should begin, TTEA advocates expanded, voluntary HIV testing and immediate ART following a positive test for HIV, regardless of the CD4 level. Several studies have shown that ART suppresses the viral load relatively quickly to the point that a person receiving ART cannot pass on the virus to others.
The test and treat strategy received fresh encouragement from the National Institutes of Health’s May announcement regarding HPTN 052. The $73 million study found that HIV-positive people were 96 percent less likely to infect their sexual partners if they were treated soon after diagnosis with antiretroviral drugs. The randomized study involved nearly 1,800 serodiscordant couples in nine countries. The finding that ART halts viral transmission was so clear that the NIH stopped the study early and advised all participants to seek treatment.
Among other studies, a 2010 article in The Lancet by the British Columbia Centre for Excellence in HIV/AIDS in Vancouver showed that a regimen of multiple antiretroviral drugs not only prolonged disease-free survival but also stopped HIV transmission. In February, China announced that it was adopting a treatment as prevention strategy with the goal of controlling the HIV/AIDS epidemic in the world’s most populous country by 2015. If China can make such a commitment, what does that say to the rest of the world?
Certainly, the upfront costs of the test and treat strategy are higher because of the larger numbers of people who would require treatment. Some 33 million people were living with HIV/AIDS around the world in 2009, according to the British AIDS organization AVERT, but only a fraction of those were receiving treatment for a variety of reasons including availability and cost of the drugs.
Brian Williams, Ph.D., a TTEA senior partner and co-author of this article, has shown that over time, test and treat saves money. Williams and others produced a 2008 mathematical look at the strategy. Published in The Lancet, the paper found that if expanded testing and immediate treatment were used in South Africa, HIV/AIDS prevalence would drop to less than 1 percent of the population in 40 to 50 years. Costs would drop over time as those infected lived out their lives on ART and significantly fewer new cases would be diagnosed. Williams and his co-authors calculated that South Africa would save $11 billion and 3.9 million lives in the coming decades with full, countrywide implementation of the test and treat strategy.
Some tough questions must be answered in a scale-up of test and treat. Will people volunteer to be tested for HIV? If they test positive, will they be willing to take ART for the rest of their lives? Can we make sure that drug resistance is controlled and does not compromise the intervention? Can a community develop the necessary support systems to carry out a long-term test and treat strategy?
We won’t know unless we try. TTEA is working to raise private funds to support its Washington advocacy work, and hopes to help mobilize the federal funding necessary for organizations to scale-up HPTN 052 implementation research in one or more countries disproportionately affected by HIV/AIDS . The law firm of Patton Boggs, LLP, in Washington, D.C., is providing both pro bono and significantly reduced rates to assist the TTEA partnership in its advocacy efforts. Already, the Department of State’s Office of the Global AIDS Coordinator, the U.S. Department of Defense and members of Congress have met with TTEA representatives.
We invite funders to join TTEA as it urges Washington to explore a community-level study of the test and treat concept. While we still have many questions to answer, this strategy holds great promise for stopping the spiral of infection and death that has devastated so many communities and families around the globe.
About the Authors:
Brian Williams is a South African epidemiologist, recently retired from the Stop TB Department of the World Health Organization. He lives in Geneva, Switzerland. Victor Dukay is president of the Lundy Foundation in Denver, Colorado.
Michael Joyner is the current Director of Positive Action, the global HIV and AIDS philanthropic effort supported by ViiV Healthcare. The Positive Action programme initiatives are community-based and focus on the key populations most vulnerable to HIV disease, including youth, girls and women, commercial sex workers, injecting drug users, the incarcerated, men who have sex with men (MSM), transgender and gay men. In the following interview we introduce one of our newest members of the FCAA Board of Directors (voted on in December 2010).
1. Can you tell us more about ViiV Healthcare and Positive Action?
This past November we celebrated the 1st anniversary of ViiV Healthcare – formed by the consolidation of GlaxoSmithKline (GSK) and Pfizer’s AIDS-related assets. We’re the only pharmaceutical company totally focused on HIV and AIDS.
The Positive Action program was started by our heritage company in 1992 to serve the global community, and is based on one or more of the following criteria: the greater involvement of people living with HIV/AIDS (PLWHA), building capacity in grassroots communities, preventing HIV, tackling stigma and discrimination, and testing innovations in education, care and treatment. I am proud that in 2012 we will commemorate 20 years of Positive Action working with the community.
One of our most visible initiatives, formerly with GSK and now as ViiV Healthcare, is our sponsorship of the Global Village at the International AIDS Conference (IAC). We’ve sponsored the village in Toronto (2006), Mexico City (2008), and Vienna (2010), and will be proud sponsors again in Washington, D.C. for AIDS 2012. We believe the conference can present the greatest science in the world, but if the community doesn’t understand, buy-in to and help implement that science, then a great opportunity is lost. The Global Village – like Positive Action - puts the PLWHA community at the center of the response and the conference.
2. What brought you to this work?
I’ve been in the field since 1997. I always wanted to do something to influence attitudes and work for those all too often left out of the mainstream. In the AIDS community I saw an opportunity to make a difference.
I am a microbiologist by training and part of my role (first at Glaxo Wellcome and then GSK) was facilitating conversations between our scientists and community treatment advocates. When I started this work, we were mostly working with gay white men from major cities in the U.S. We began our annual Summer Summit in 1999 (now in its 13th year), to facilitate an exchange of scientific information with the community. The company has worked really hard to reach out to include the entire community (increased participation by youth, women, African Americans, and Hispanics, etc) and to put PLHIV at the center of all we do.
Over the years, the people working in HIV have greatly influenced my life, and reinforced the way I think. Most recently, for instance, I saw the power of listening to peers in the community. In 2010 we were given 50 million pounds to start a new fund (The Positive Action for Children Fund). Working in collaboration with a small team of colleagues from the new company we meet directly with organizations and individuals from the community. After doing our homework, we asked how we could best spend 50 million pounds to enhance the efforts around Mother-to-Child transmission? What we discovered is that funders don’t always approach the community to get direct feedback before setting up programs, but many times set up their own projects based on what they think the community needs and then ask the people on the ground how to implement the project. The individuals and NGOs we approached were more than happy to volunteer examples and innovative solutions to demonstrate where our money could have the most impact.
The Positive Action for Children Fund aims to support and inform the global effort to alleviate the impact of HIV and AIDS on maternal and child health by supporting interventions that engage affected communities, developing their capacity to participate and lead. Over the next 10 years, 5 million pounds a year will be disbursed through the fund for primary prevention, comprehensive sexual education, preventing unintended pregnancies and helping families and children affected by HIV. This is the way that ViiV Healthcare approaches its work – by listening to and then responding to the needs of the community.
3. What are your current funding and programming priorities?
In 2010 the Positive Action program supported 18 partners in 50 countries. In 2010 ViiV Healthcare provided £6,404,354 (roughly $9,326,000 USD) in grants to 214 patient groups through its funding streams: Positive Action, Positive Action for Children Fund and Positive Action Community Grants (given by local operating companies).
A few programs I’m particularly proud of:
- In February 2011 we announced that our partnership with the International HIV/AIDS Alliance - the Vida Digna Project – would expand into five additional counties in Central America over the next three years. The Vida Digna project seeks to tackle the issues that lead to HIV-related stigma, discrimination and violence, and prevent vulnerable populations – MSM, sex workers, PLWHA, transgender individuals, and injecting drug users – from accessing prevention and health services. Vida Digna began in 2005 when the community in Mexico and the International HIV AIDS Alliance came to Positive Action and identified the fact that the most vulnerable populations were being ignored and/or were absent from discussion about HIV in the region north of Mexico City. After the success of the project in Mexico and next El Salvador, the new phase of Vida Digna will take the project to Costa Rica, Guatemala, Honduras, Nicaragua and Panama. This project is a great example of kinds of things we like to fund: the community identified a set of problems, they worked to create a model for addressing the issues, they fine-tuned the intervention over several years, and then documented its success. Now other funders are coming in and funding its sustainability.
- ViiV Healthcare supports MSM in many different ways. We are a proud partner of a new funder consortium – also including the Levi Strauss Foundation and Hivos – that supports the Global Forum on MSM & HIV’s new technical assistance (TA) program that will support grass-roots activists in Central America, North Africa and Southeast Asia with trainings and funding to develop and implement innovative rights-based advocacy projects. The new initiative was announced on International Human Rights Day (December 2010) to signal the growing recognition between homophobia and the spread of HIV. This two-year pilot program is a great example of how funders can work together to pool their resources to provide funding more efficiently. Positive Action has also supported amfAR’s MSM initiative since 2007 with a series of grants at the local level to build the capacity of MSM organizations in the Asia-Pacific region to address the epidemic in ways that make sense and are appropriate for their community. The MSM initiative is focused on fighting the spread of HIV among MSM in the developing world.
- Coming out of IAC in Vienna, we recognized a vital area that needed a new focus in the global community: young people. We have been supporting the MTV Staying Alive Foundation’s prevention work for several years. They support youth-focused prevention initiatives through an RFP process. Positive Action provides funds for a related leadership, capacity building and development course and e-learning opportunities for their grantees. The course offers grantees the opportunity to build a network of peers while also learning valuable skills to make them sustainable organizations. Our latest Youth related program is a new round of funding for the HIV Young Leaders Fund over the next three years to support their work in Southeast Asia and the Pacific. I urge members to look into ways they can support this new fund.
- We’re also supporting the work of the International Center for Research on Women around implementation research focused on addressing gender-specific vulnerabilities of older girls in Africa, including violence and stigma. The goal of this project is to develop an intervention focused on meeting the needs of older girls that can be disseminated broadly to other donors, policymakers and programmers. Changing gender norms is also a focus of our work with the Ubuntu Education Fund in Port Elizabeth, South Africa. There we are supporting a three-year project focused on education and interventions for young boys and men that builds and enhances respect for girls and women and hopefully reduces sexual violence.
- Finally, we just announced the expansion of the first U.S.-based Positive Action program: the U.S. Southern Initiative which focuses on access to treatment and care, and adherence. The first phase of the Network launched last year in Georgia, Alabama, Louisiana and Mississippi, and has now been expanded to Florida, North Carolina, South Carolina and Tennessee. The U.S. Southern Initiative reflects the mandate of the National HIV/AIDS Strategy to target resources to populations and geographies most in need. This initiative seeks to address the high infection rates among African Americans and Latinos, the disparities in the South, and other areas of need in the region - the incarcerated, undocumented and homeless.
5. Why did you decide to join the FCAA Board of Directors?
First, it was an opportunity to work with people who share my life’s values. I also want people to know more about Positive Action and our initiatives. For instance, yes we’re the principal sponsor of the Global Village next year, but we encourage all members to work with the community to make this conference a huge success and help refocus the energy and resources needed to the fight the disease in the United States. There’s room for everybody to be involved next year in Washington.
Beyond that, the funding world is rather small; I wanted to better understand where my colleagues are funding the community to know how to synergize and avoid duplications. I think there may be redundancies out there – so instead of building the capacity of new organizations, should we be looking at existing organizations and strengthening them?
6. Is there anything else you’d like to share with the FCAA community?
Please keep an eye on populations that are most vulnerable to this disease. It can be easy for funders to avoid working with some of the most affected populations (Intravenous Drug Users, MSM, sex workers, etc), but if we are ever going to end this epidemic – we have to strengthen the work of these groups.
Also, don’t shy away from advocacy for PLHIV – we need these communities to be heard, and sometimes that can only happen if we (funders) facilitate and encourage it through our support.
Merging care and commerce, supporters of Design Industries Fighting AIDS (DIFFA), come from all fields of fine design and the visual arts, including: architecture, fashion design, interior design, photography and consumer product design. During its twenty-five year history, DIFFA has granted over $38 millions dollars to AIDS service organizations nationwide which support public policy initiatives, preventive education and/or direct care to people living with or affected by HIV/AIDS and to those at risk. According to FCAA’s most recent resource tracking report, DIFFA was one of the top 25 domestically focused HIV/AIDS funders in the U.S., disbursing more than $1.2 million to HIV/AIDS-related projects in 2009. DIFFA is most well known for their signature fundraising event and multi-city marketing platform, DINING BY DESIGN, that “brings together internationally celebrated designers and local talent to create three dimensional dining installations that awe, inspire, and delight.”
In the following interview we introduce David Sheppard, Executive Director of DIFFA, and one of our newest members of the FCAA Board of Directors (voted on in December 2010).
1. Can you tell us a little bit about the history of DIFFA?
DIFFA started around 25 years ago – we’ve been around a long time. We started in, and continue to be based, in the design industries, which are quite varied: everything from architecture, to interior design, to landscape design, to floral, to graphics, to furniture and fabric. We cover a lot of ground in what we call an industry-based charity.
There are a lot of trade associations in our industry, but we’re the only charitable, philanthropic grantmaker within the industry. We started, as many organizations in this field did, when people in our industry started passing away so fast (from HIV/AIDS). Frankly, those early days were so very grassroots – people getting together after work and literally passing the hat to collect money to pay for a friend’s cab fare to the doctor, or their Con Ed bill, or whatever. We didn’t really expect to be around more than a year or so. We thought, you know, “this is America, we’ll figure this out.” And here we are 25 years later – a little more organized than we were back in those days, but still at the work.
2. What makes DIFFA different than other funding organizations?
I think the primary difference between DIFFA and most charitable organizations (funders) is that we do not typically go after philanthropic dollars. Because we’re based in an industry, and because our Board Members are all businesspeople, we often look for ways to give back to the people and companies who make contributions to the foundations. So we actually go after marketing budgets, for which there is typically more money available, and we can do that without competing for the same dollars as the organizations to which we grant to. That’s one of the things we really like about DIFFA, that we raise and grant money without competing with our grantees.
3. How long have you been doing this work?
I started as a volunteer in Atlanta, 25 years ago, just when DIFFA had been created. I saw an ad for the organization in Interiors Magazine that showed about 100 people gathered on the steps of some building…I interpreted that to be a big organization, not realizing that at that time there was only a part-time Director that was bouncing from desk-to-desk depending on who didn’t show up for work that day. But the ad made a big impression on me and I contacted them and started raising money for DIFFA in Atlanta. Then I was on and off the (DIFFA) National Board for a number of years. About 15 years ago, the Chairman of our Board at the time, Dan Baldinger, invited me after a Board meeting for what I refer to as a “fateful martini” at the Four Seasons. At the time, the board members were deciding what to do about current management, and I knew very well where the conversation was leading. As I had recently taken some time off in Atlanta to figure out what I wanted to do with the rest of my life, I said, “Dan, I know what you’re doing here…I’d be willing to come up (to New York City) and commit 3-6 months while a search is done for a new Director.” And I never made it home - I’ve been the Director for the last 15 years.
4. Did you have a background in design before you started?
Yes I did. Well, I had a background in a lot of things: architectural lighting design and interior design; I did a lot of civic and community work, music and art festivals, and I even did the Olympic Torch Relay for AT&T. I really enjoyed being a volunteer because it allowed me to do a lot of different things.
When it came to AIDS, though, I was not strong enough emotionally to be a buddy or a caregiver. When my cousin Blake died, who was just a year younger than me, leaving his wife and child, and more and more of my colleagues were dying, I felt the best thing I could do was to raise money. So that’s what I’ve been doing ever since.
5. How is DIFFA structured?
There’s only one fiduciary board, the National Board of Trustees. We have chapters or community partners in about 12 cities. The ones that are chapters have local advisory boards, but they don’t have authority. We are very much guided by the fact that money raised in a community is given away in that community. So we typically support how they want to grant their money in their community. We do have specific guidelines, and will initiate certain RFPs from time to time, but we mostly encourage them to base their grantmaking goals on a community needs assessment.
Most of our money –nationwide – goes to preventive education, some advocacy and direct care. That has flipped over the years – it used to be more direct care because at that time the government hadn’t picked up its share of the care piece, but now our focus is primarily preventive education.
6. What’s ahead for DIFFA in 2011?
We recently secured funding from two foundations to take another look at DIFFA and reorganization, because, as the epidemic has evolved, DIFFA hasn’t done so at the same rate. We are doing a six-month study with an outside, objective consultant to either better define our areas of interest within HIV/AIDS or possibly to expand our mission to accurately reflect the diverse interests of a very, very diverse industry. HIV/AIDS will always be a priority, but we have been advised is that if we expand the number of pockets that we can reach into, we could continue to fund HIV at the same rate that we currently are or more, while also addressing other issues of concern to people in our industry.
We’ve just started, and it’s very exciting. We’re doing a lot of interviewing and surveying.
7. What would the rollout of this process be?
I think it’s the first step in a three-step process. Whatever we decided to be or do, we then have to build a fundraising strategy and business model around that. And then we have to make sure that we effectively communicate this change to our donors and stakeholders because we don’t want people to think we’re turning our backs on our original mission.
8. Why did you decide to join the FCAA Board of Directors?
I thought about it for quite some time. I wanted to be able to contribute something of the group aspect of DIFFA’s work that could be valuable and help expand the (FCAA) Board’s capacity to fulfill its mission. There are unique aspects related to being on the Board: the opportunity to make a valuable contribution to FCAA, as well as to learn from fellow Board members, and hopefully, the ability to apply their best practices to improve ours. I also want to do whatever I can to make FCAA’s goals as achievable as possible.
6. Is there anything else you’d like to share with the FCAA community?
It’s interesting, after 15 years as Executive Director, I’m often called a “long-term ED survivor.” Now as I’m approaching 65, many people ask me, “what after DIFFA?” My thought now is that whenever I do decide to leave DIFFA that I join the Peace Corps. I’ve been interested in it ever since it was first created, and now it would give me the opportunity to go and do good works in an area or country challenged by the spread of HIV/AIDS.
In addition to the FCAA Board of Directors, David also serves on the Grants Advisory Committee for the New York City AIDS Fund at the New York Community Trust
INTERNATIONAL HUMAN RIGHTS FUNDER GROUP IN FOCUS FEATURE: A HUMAN RIGHTS LENS ON HIV/AIDS GRANTMAKING
Including an interview with Daniel Lee, Executive Director, Levi Strauss Foundation and Chair of the Board, FCAA
(From the Human Rights Funding News, IHRFG e-Newsletter, January 14, 2011)
The 22nd annual World AIDS Day was commemorated on December 1, 2010. The theme, "Universal Access and Human Rights," served as an important reminder that universal access to HIV/AIDS treatment, prevention and care are fundamental human rights. While much progress has been made, the spread and incidence of HIV/AIDS is still disproportionately high among vulnerable populations most at-risk of discrimination, stigma and lack of human rights protection.
A human rights approach and framework looks beyond the public health aspect of the HIV epidemic and attempts to address the systemic, root causes and effects of the issue.
In the HIV/AIDS context, violations of human rights -- including discrimination against women and violations which create and sustain poverty -- cause increased vulnerability to the HIV infection. Conversely, people living with HIV suffer human rights violations such as further discrimination and violence. As such, the role of human rights in responding to the epidemic and in dealing with its effects has become increasingly clear.
The affects of HIV on vulnerable populations such as women, children, the poor and marginalized groups has contributed to a renewed focus on economic, social and cultural rights. The right to health has been increasingly defined and now explicitly includes the availability and accessibility of HIV prevention, treatment, and care and support for children and adults. Either through legislation or litigation, many countries have recognized that their people have the right to HIV treatment as part of their human rights. In addition, a human rights approach has addressed the rights of those engaged in illegal activities and the importance of the right to participation of those most affected by the epidemic: people living with HIV and those highly vulnerable to infection. Developments such as these have strengthened the principles of the indivisibility and universality of human rights.
With the growing focus on the human rights abuses that continue to challenge the HIV/AIDS response, Funders Concerned About AIDS (FCAA) invited Michael Hirschhorn, Executive Director of the International Human Rights Funders Group, and Daniel Lee, Executive Director of the Levi Strauss Foundation, to talk to grantmakers about the intersection of HIV/AIDS and human rights at the FCAA 2010 AIDS Philanthropy Summit (Dec, 6).
As one of the leading HIV/AIDS grantmaking institutions in the world, the Levi Strauss Foundation's commitment to health and human rights is at the core of its philanthropy. Below are some key questions and answers from Daniel Lee on
the importance of a rights-based approach to HIV/AIDS grantmaking:
Q: Why is the HIV/AIDS epidemic a human rights issue?
A: HIV/AIDS is arguably the most stigmatized medical condition in human history. Other viruses and plagues were highly stigmatized because they were extremely contagious and deadly. In contrast, the means of prevention for HIV/AIDS are well known. With HIV/AIDS, we are contending with twin epidemics: the medical epidemic and a staggered epidemic of stigma and discrimination.
More than 25 years into this global epidemic, people living with and vulnerable to HIV/AIDS face a staggering array of human rights abuses. They are denied the right to marry, quarantined in prison and other institutions, denied housing and jobs and refused basic healthcare. They are abused by police and other government officials, and denied entry into many countries by restrictive policies with no basis in public health.
As Nelson Mandela has said, “AIDS is no longer a disease. It is a human rights issue.” No doubt, HIV/AIDS stigma and discrimination are often intertwined with the discrimination attached to being a woman, being poor, having a different sexual orientation, engaging in sex work or drug use, or being in prison. They serve as serious obstacles to effective delivery of prevention, testing, treatment and care services. They have the pernicious effect of driving underground those people most in need of critical health services. Health, HIV and human rights are inextricably linked.
Simply put, unless we go for the guttural in defending the human rights of the most marginalized people in the context of HIV/AIDS, we will fail abysmally in achieving our public health goals.
Q: What is the Levi Strauss Foundation’s approach to HIV/AIDS grantmaking with a human rights lens?
A: Levi Strauss & Co. and the Levi Strauss Foundation are driven by four core values: originality, empathy, integrity and courage. These values have shaped the Foundation’s human rights-focused response to the HIV/AIDS epidemic, in both their business practices and grantmaking. The bulk of the LSF’s HIV/AIDS funding—approximately $2.5 million in 2009—focuses on human rights advocacy, with support for litigation, policy change and community mobilization. Among LSF’s grantees are pioneers on the front lines of high-stakes struggles where religion, government policies and cultural norms are primary forces contributing to discrimination and abuse in the context of HIV/AIDS. The Foundation also supports direct services—prevention, testing, treatment and care—for apparel workers in key sourcing countries like Lesotho, Haiti, China and Vietnam.
LSF firmly believes that to ensure the effectiveness of HI V/AIDS responses, it is paramount to protect the human rights of highly marginalized groups—including sex workers, gay and bisexual men, prisoners and people who use drugs. LSF’s HIV/AIDS grantmaking strategy focuses on driving social change to address this unique nature of HIV/AIDS.
In 1983, the Levi Strauss Foundation made the first corporate donation in the fight against HIV/AIDS with a donation to the Kaposi Sarcoma Clinic at San Francisco General Hospital. Over the years, more than $45 million in social investments from the Company and Foundation have helped build several HIV/AIDS organizations from the ground up—not only in San Francisco but over 30 countries around the world. Levi Strauss Foundation believes that it is incumbent upon them to continually push the limits of the response to this global epidemic. To this end, they became the first corporate foundation to support expanded access to sterile syringes as the only proven method of preventing HIV among intravenous drug users.
More recently, Levi Strauss & Co. has made a commitment, through the Clinton Global Initiative, to provide comprehensive prevention, treatment and care to all employees, retirees, and dependents—a work force of more than 11,000 people that spans 45 countries. The company seeks to help “change the game” around provision of insurance benefits—perhaps one of the final frontiers in the global fight against AIDS.
For more information or to learn more:
- The International Guidelines on HIV/AIDS and Human Rights from the Office of the UN High Commissioner for Human Rights/UNAIDS, 2006
- HIV Human Rights Now!
- Visit the website of the Levi Strauss Foundation
About IHRFG
The International Human Rights Funders Group (IHRFG) is a global network of grantmakers and philanthropists committed to advancing human rights around the world. Our aims are to improve the strategic effectiveness of funding for human rights; to expand the extent to which funders across a range of issue areas incorporate a human rights framework into their grantmaking; to strengthen linkages among human rights funders within the US and around the globe; and, ultimately, to increase overall funding for human rights. IHRFG emphasizes peer leadership among its members, and organizes its work around three primary programmatic strategies: education and convening, outreach and communications, and policy and research.
In this 7th edition of “10 Minutes With...” FCAA speaks to Natasha Bilimoria, President of Friends of the Global Fight Against AIDS,Tuberculosis and Malaria. Natasha will be hosting an “Impact Discussion Group” at FCAA’s 2010 AIDS Philanthropy Summit (Dec. 6th) focused on opportunities for partnership between funders and multilaterals. Get a preview of that discussion, and new insight into the Global Fund, inside this interview.
1. Friends of the Global Fight was founded in 2004 as an advocacy organization dedicated to sustaining and expanding support for the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund). Can you tell funders more about your organization?
Friends’ job is to educate, engage and mobilize U.S. decision makers to support the Global Fund, the world’s largest public health financier. We specifically target leaders and policymakers in Washington, D.C., sharing information on the Global Fund’s approach and results. Beyond that, our educational efforts bring the issue of global health to light here in Washington and pave the way for strides made by other organizations on the ground, as well. Friends advocates on behalf of the Global Fund in particular, but the information we provide to U.S. leaders benefits global health efforts at large.
Friends also provides the Global Fund Secretariat with strategic direction and legislative counsel, integrating the two organizations’ education and communications activities. And we act as a conduit between the Global Fund and the U.S. government, fostering collaboration and mutual support between the Global Fund and the U.S. government’s bilateral AIDS and malaria programs.
2. You joined the organization when it was still relatively new (in 2005). What brought you to this work?
I came to Friends from the Elizabeth Glaser Pediatric AIDS Foundation, where I worked on building U.S. support for global programs to prevent mother-to-child transmission of HIV, as well as programs that provide care and treatment for families. Before that, I held positions at the White House and in the Treasury Department, where I worked on domestic economic development issues. So I have a perspective on health and development — both here in the U.S. and abroad — that has grown out of experience on two different sides of advocacy.
During my time at the Elizabeth Glaser Pediatric Foundation, the issue of HIV/AIDS was starting to gain significant attention, and it was there where I started to see the critical importance of the Global Fund and its success. Friends gave me the opportunity to promote the Global Fund’s work as the single largest tool we have in supporting better health worldwide. A successful Global Fund meant that we could reach millions of people with prevention and treatment programs, taking pilot projects to a national scale. And considering the devastation the disease was causing in Africa as well as other regions of the world, it was a necessary endeavor.
What the Global Fund has been able to achieve in the past eight years, in terms of measurable results and a return on U.S. investment, is incredible. And I have to say, the quality of the advocacy work that Friends is able to do with such a small staff is pretty remarkable, as well.
It’s true that Friends and the Global Fund are young organizations, but they’re also incredibly effective. It’s a privilege to be able to be a part of this growth and watch it from the ground up.
3. Your partners have said that your organization helps to represent the voice of the Global Fund — and its recipients — to D.C., and that a huge part of that work is telling the story of why and how investment in the Global Fund is working. How do you tell this story? What messages and stories have been particularly successful with key decision makers?
We tell the story in a lot of different ways: through educational meetings with key decision makers and staff on Capitol Hill and in the Administration; by ensuring that the Global Fund is part of critical news stories, op-eds and advertising campaigns; and by participating in global health conferences and global health-focused events here in D.C., as well as around the country.
In the work we’ve done through these outlets, we’ve found that one of the most important messages is also one of the most straightforward: To date, the Global Fund has saved 6.5 million lives worldwide. If you want to know where the money is going, it doesn’t get much simpler than that. You can break it down by disease and specific outputs — the Global Fund has provided HIV/AIDS treatment to 3 million people, distributed 160 million bed nets for the prevention of malaria, provided tuberculosis treatment for 7.7 million people — but the fact remains that what we are talking about is lives saved, many of them women and children. In fact, the Global Fund’s work makes some of its most dramatic impact more broadly, in the reduction of child mortality. Naturally, that’s a message that resonates with everyone.
Real-life evidence of this is seen on the ground in every country in which the Global Fund supports programs. A few strong examples are Rwanda, where the percentage of children sleeping under an insecticide-treated net increased from 4 percent in 2000 to 56 percent in 2007; Namibia, where 97 percent of infants are now born free from HIV; and Georgia, where treatment for multidrug-resistant tuberculosis is now available for anyone who needs it.
None of this would be possible without worldwide support for the Global Fund, particularly U.S. leadership. And this is something that decision makers in the U.S. need to hear, as well: U.S. contributions translate to actual lives improved and saved, on a massive scale.
4. In October you released the exciting news of the U.S. Administration’s three-year $4 billion pledge to the Global Fund. You commended the Administration’s commitment, but also highlighted that total pledges to the Global Fund fell short of what was hoped for. What’s next in your work in trying to increase overall pledges? Do you support/offer advocacy on behalf of the Global Fund with other governments?
First off, let me say that the U.S. showed its continued strong support and leadership in making its first-ever pledge to the Global Fund. Not only did the pledge represent a 38% increase over the most recent U.S. commitment, it was also the largest pledge to the Global Fund to date. Friends’ focus is on the U.S. government, and even with this pledge, there is still plenty more to be done just in that arena. It’s important to remember that the U.S. pledge is just that: a pledge, not a guarantee. Work still has to be done each year to ensure the U.S. makes good on the promise made in October.
Because of the recent election and the shift in Congress, our next steps will involve extensive educational efforts on Capitol Hill. There are going to be a lot of new members who have no knowledge of the Global Fund — and little knowledge of global health issues in general. And in this economic environment, newly elected conservative members won’t be the only ones on a quest for cuts.
That said, the Global Fund model of partnership, leverage and accountability is one that has broad appeal, and the results of its work have a positive effect on a number of national interests. Global health is an economic and security issue, not just a humanitarian one.
The Global Fund offers an opportunity for both sides of the aisle to pull together behind something that works and to continue to lead the charge for better global health. It’s Friends’ job to make sure the issue of global health resonates with policymakers — to promote awareness of both the cost-effective, lifesaving work of the Global Fund and the global implications of allowing progress to slip away. So many things are at stake, including millions of lives, if we relinquish our leadership role.
5. In February the Obama Administration released a framework for the Global Health Initiative. FCAA has been monitoring it for opportunities for private funders, but can you tell us a little more about the role of the Global Fund in the GHI? For example, its emphasis on a “bottom-up” approach that emphasizes country ownership?
The Global Fund is built on several principles that align with the President’s GHI, and chief among those are the related ideas of country ownership and global partnership. The Global Fund model is one of partnership with recipient countries, starting with the grant process — countries submit grant proposals based on their specific priorities and strategies. The GHI promotes investment in these types of country-led plans in large part because they promote stewardship, good governance and accountability. All of these lead to stability, which is in the U.S. interest, as well — this is where the “teach a man to fish” argument comes in.
To facilitate this process, countries are required to ensure the participation of all in-country stakeholders involved in public health — including civil society and the private sector. And private sector partners offer more than just funding; they offer workable models for solving global health problems in a time of limited resources.
The GHI is constructed on the premise that global health is a shared priority. No single country or organization can address such a diverse and wide-ranging problem alone. Tackling a problem on the scale of a pandemic requires something more than the sum of the parts, which is what partnerships are all about. The Global Fund is dedicated to the principle that all stakeholders should own, and be held accountable for, a piece of the solution.
6. At FCAA’s 2010 AIDS Philanthropy Summit you will be co-hosting an impact discussion focused on partnering with multilateral organizations. Compared to public sector support, private philanthropy only represented 4% of total international assistance to AIDS in 2009 (according to UNAIDS). Why do you think it’s important to engage funders in this type of collaboration? What do they have to offer?
Again, it’s not only private funders’ direct support that has an impact, it’s also the credibility, best practices and model of accountability that many of these entities represent. These types of funders also really help drive public awareness of global health.
Businesses not only have a stake in the health of their workers, but they also benefit from the health of the global economy. For example, as a Global Fund Corporate Champion, Chevron increases its investments in health beyond the workplace and channels its contributions into grants based on national strategies and priorities.
In a different type of partnership, the organization (RED) facilitates multiple relationships between the Global Fund and global companies by working with iconic brands to create unique (RED) products. Through (RED), the Global Fund is able to capture consumer dollars — a portion of the proceeds from the sale of (RED) items goes exclusively to the Global Fund’s HIV/AIDS efforts — as well as spread awareness of its mission to buyers worldwide.
For our part, Friends is a small organization, and our engagement with the private sector is invaluable. With support from corporations, Friends helps ensure that the Global Fund is able to collect on that $4 billion pledge from the Obama Administration. This endeavor will require all the expertise, credibility and high-powered connections Friends and its supporters can bring to the table.
INCREASES, IMPACT and a TONY: 10 Minutes with Tom Viola, Executive Director, Broadway Cares/Equity Fights AIDS
In 2009, state budgets across the country were slashed causing
devastating cuts to prevention and direct service efforts and creating
waiting lists for AIDS drug programs in many states. Against this
backdrop, one of the few glimmers of hope has come from Broadway Cares/Equity Fights AIDS (BC/EFA) whose
supporters stepped up to the plate to provide welcomed increases in
funding to help sustain vital life-supporting programs.
In 22 years, BC/EFA has given more than $53 million to HIV/AIDS and family service organizations through its annual National Grants Program. The program’s three grant-rounds include: #1) Food Service and Meal Delivery Programs; #2) Nationally Recognized Service and Advocacy Organizations; #3) Emergency Assistance, Direct Services, One-Time Expense, Substance Abuse and Harm Reduction Services, and Quality of Life Programs. This ongoing funding support is an essential component of BC/EFA’s commitment to people living with HIV/AIDS, their families and the organizations that serve them. As a grassroots organization, BC/EFA raises funds without relying on an endowment or business-related profit. Those funds are quickly translated into grants for organizations across the country. In this issue of “10 Minutes With…”Tom Viola, Executive Director of BC/EFA shares their recent good giving news, and how they’ve prioritized their funding to sustain impact.
Q1. How was your grant-making affected by the economic crisis? Our fundraising was down by 17% in 2009 – primarily in terms of corporate support, event sponsorship and major donor gifts. Everyone has experienced that. There was a great retrenching by donors at every level. It didn’t necessarily go away, but there was certainly less of it. For example, a major donor who in 2008 gave $5,000, in 2009 might have been able to do $2,500. A regular direct mail donor might go from $100 twice a year, to $50 once. Thankfully, the very unique fundraising we do with the theatre community was steady. Attendance on Broadway, with the national tours and at theatres across the country remained quite strong. The community very generously continued their fundraising efforts for us with a wide variety of initiatives, including audience appeals, signed poster sales, auctions, special cabaret performances and, of course, hundreds of theatre professionals participating in our annual fundraising events and one-time benefit performances.
Caption: The grand total raised by 56 Broadway, Off-Broadway and national touring shows in six weeks of fundraising prior to the 24th annual EASTER BONNET competition.
But whatever the sum of all the fundraising parts, essentially what we raise in any one fiscal year – starting October 1st through September 30th – is what BC/EFA grants in that same time period. There is a prudent reserve. But it’s more or less money in, money out. The reserve is a safety net that is carried over year to year and would allow us to weather operationally a sudden interruption of our fundraising efforts. But what I say to staff every October 1st is that the fundraising odometer, no matter what we’ve done the year before, clicks back to zero.
Q2. You have some very good news to share. Can you tell us about your most recent round of grantmaking? Sure, I’m very happy to report that over the last eight months, BC/EFA awarded grants totaling $3,720,000 to 475 AIDS and family service organizations in 46 states Washington, D.C. and Puerto Rico, through our National Grants Program compared to $3,125,000 to 462 organizations in 2009, an increase of 17%. That includes our most recent grant round in July (the final of three rounds) in $1,785,000 went out in grants to 322 AIDS and family service providers nationwide, a 10% increase over 2009’s third round of $1,684,000. This doesn’t include the $4.1 million sent to The Actors Fund, the social service provider and employee assistance program of the entertainment industry, half of which funds The AIDS Initiative.
Social service providers, particularly those serving people with AIDS, have been forced to continue cutting their budgets in 2010. While we can never make up the amount of public dollars cut or decreases in other public support in general, BC/EFA is very pleased to be able to do better than we did in 2009 and come close to what we did in 2008. For those service providers it is small respite in the midst of very difficult times. But certainly not enough, particularly as many agencies, particularly those providing food services and delivered meals or working, health clinics certainly and those providing a wide variety of services to minority communities are seeing a sharp increase in clients.
Q3. Why is it important to prioritize direct services – particularly in these difficult economic times? HIV/AIDS has always created or reinforced economic hardship. It magnifies issues of poverty, absence of decent, affordable health care, lack of job opportunity, homelessness, hunger and a fraying network of resources. BC/EFA will never be able to make up for any organization, large or small, the budgets cuts that have been made at the state level, or for decreases in their own corporate or major donor support. But we do know that the $5,000 - $25,000 grants that we award allow a provider to address immediate short-term needs and keep operating, responding directly to clients immediate needs as they hopefully are able to address long-term challenges. We’ve always looked to fund direct services, as that’s where we felt we could have the biggest, immediate impact with the size of grant that provided.
Secondly, the people in the theatre community whose fundraising efforts make so much of this support possible, for the most part, are not well versed in the intricacies of AIDS service delivery. What moves them to do as much as they do, which is truly remarkable, is a clear and simple commitment to helping people in crisis and need. That’s most easily understood in terms of direct services, particularly around meals and nutrition, a doctor’s appointment, a secure, safe and supportive place to live, emergency financial assistance. It’s almost direct services as triage.
These folks are extraordinarily generous and motivated to want to make a difference. They are genuinely moved to want to help people in a way that only they can do it. What they say to an audience in a fundraising appeal from the stage is less an AIDS pitch and more about how we all can come together to make a difference. That story is told quickly, in simple sentences, with a general but heartfelt understanding of our grant-making process and is totally based on the rapport the actors have created with the audience during the performance. It’s not what you’re going to hear at an AIDS conference, demonstration or policy meeting. And it shouldn’t be. To work, it can’t be.
Caption: The annual BROADWAY BARES fundraiser surpassed $1 million in 2010
Q4. But it is, in fact, more the direct services. BC/EFA is one of the few funders who support domestic HIV/AIDS-related advocacy; and in fact, you reported a 35% increase from 2009 in your “Nationally Recognized Service and Advocacy Organizations” grant round. Why does BC/EFA specifically invite advocacy grant seekers? Advocacy and prevention programs are definitely less easy to explain, in terms of our theatre fundraising. We don’t expect the company of a Broadway show or national tour, for example, to engage the audience in a discussion on AIDS issues. However, as an organization, we fund those doing public policy work because those organizations directly impact the work of the entire network of AIDS service providers. We created the Nationally Recognized Service and Advocacy grant round in 2002 in recognition of the importance community-based organizations whose efforts can change the landscape of service delivery, public policy and treatment options for people living with HIV/AIDS nationwide. Again, BCEFA’s support is not going to radically transform any one issue. But we are steadfast in our on-going commitment to those who can.
Q5. 2008 marked the 6th year that BC/EFA ranked as the top AIDS grantmaker with a primarily domestic focus. What does that ranking mean to BC/EFA and why do you communicate it to your constituents? It’s nice to be recognized. But it’s not a contest and, in truth, I wish that we were fourth or fifth, with three or four other funders doing even more than we are presently doing. But I do appreciate the work that FCAA does in reporting and verifying the grant making we all are doing. It’s very important for people – fundraisers and donors alike - to understand where all this money goes and how it’s put to work, and that it’s indeed having an impact.
Q6. You have been with BC/EFA from the beginning. Can you share a little of your history with us? I came to New York to be an actor in the late 70s, did that some out of town but by the mid 80’s was doing a lot of freelance writing (and a good deal of cater-waitering.) That eventually landed me at Actors Equity, the actors and stage managers union, as their special projects coordinator. This was about 1987-88. I was assigned to staff the newly formed Equity Fights AIDS committee. At the time I was also working as Colleen Dewhurt’s assistant. Colleen was a brilliant actress and an amazing women who was then president of the Actors Equity and quite respected and beloved in the Broadway community. Colleen’s heart knew few bounds. She was determined that Equity Fights AIDS and Broadway Cares – an organization that had come up at the same time – would take root in the theatre community and reach out to many others were all to willing to turn their backs on. She encouraged me personally to do whatever needed to be done to make this happen. And unbeknownst to me at that time, I needed something to connect my passions, talents, heartbreak and enthusiasms to, as I think many others in the community did. And we all somehow found each other in this whirlwind that, I think, Colleen understood instinctually better than just about anyone.
I’ve been involved since the days when literally we were trying to figure out how to do a bake sale in the lobby of Cats, through the merger of the two organizations in 1992, and then the incremental but incredible expansion of this fundraising efforts that has involved literally thousands of theatre artists and over the last 22 years has now raised over $180 million dollars. It’s different than it was when it all began, but it goes on.
Caption: Liza Minnelli stars in the opening number of the 21st annual GYPSY OF THE YEAR competition
Q7. This June you were presented with the 2010 Tony Honors for Excellence* in the Theatre. How does it feel to be a Tony winner, and who did you wear? It was wonderful and I have to say a bit overwhelming to receive the Tony Honor. The fact of the matter is that I share it with everybody, anyone whose efforts and generosity of talent, time and spirt has made this all possible – from the members of BC/EFA staff and Board, to literally thousands of volunteers across the community and what must be hundreds of thousands of donors, large and small, across the country. It was a very exciting and emotional experience.
*Established in 1990, this honor is awarded annually to institutions, individuals and organizations that have “demonstrated extraordinary achievement in theatre, but are not eligible in any of the established Tony Award categories. Watch Tom’s acceptance speech here]
Q8. Any parting words? You know, we’ve had a very good year. And hopefully we’ll have more. BC/EFA’s commitment and that of the theatre community and our donors is unwavering, though the outcome will vary from year to year. But rather than hold on to money raised today for fear that the next few years will be more difficult -- and they very well may be -- what we really want to do is get that money out immediately to the organizations that need it right now. It doesn’t help any AIDS service provider, or any person living with HIV/AIDS or any critical illness for that matter, for us to hold on to money now to grant next year. I guess it’s a bit of a risk, trusting that the enthusiasm and support will be there. But so far, so good. Or as the cast sings in Rent: “No Day But Today.” Somehow it works.
Read more about BC/EFA’s 2010 grant-making and meet a few of their grantees in: BROADWAY CARES 2010 NATIONAL GRANTS IN DIFFICULT TIMES, A BIT OF GOOD NEWS FROM COAST TO COAST
For more information about BC/EFA’s fundraising and grant making efforts visit: www.broadwaycares.org
With a Youth Pre-Conference and sessions devoted to youth leadership, AIDS2010 in Vienna included a strong focus on and inclusion of young people involved in the HIV/AIDS response. In this sixth installment of “10 Minutes with” FCAA is pleased to present the following interview with Caitlin Chandler, Interim Coordinator of the HIV Young Leaders Fund – a new funding mechanism that allows young people to fully govern and direct substantial funding to youth-initiated projects and organizations that focus on young people living with HIV/AIDS and most-at-risk young people. In July 2010 the Fund announced its inaugural grantees – 23 organizations from across 18 countries. Grant sizes range from $1,500 to $20,000. FCAA spoke to Caitlin about the Fund and the essential link between sustainable funding and building youth leadership.
1. Can you tell us about the goals and mission of the HIV Young Leaders Fund?
The goal of the HIV Young Leaders Fund is to enable new leadership in the HIV response among young people most-affected by HIV, including young people living with HIV. The Fund aims to close the gap in youth-led HIV and AIDS initiatives through ‘funding the unfundable,’ and supports organizations of young people 30 years and younger seeking to make a difference in HIV who are often excluded from or unreached by existing programs, such as: young sex workers, young people from sexual minorities, young injection drug users, and young people living with HIV. The Fund also supports activities that remain unfunded or underfunded by existing funding mechanisms, including core funding for community-based organizations.
2. How and when did it form?
In November of 2009 the Tides Foundation hosted a meeting that brought together stakeholders from different youth constituencies involved in the HIV response. The attendees decided to form an interim steering committee to govern the Fund (i.e., to decide on funding priorities, our budget, our work plan, all major strategic issues).
The Tides Foundation currently hosts the HIV Young Leaders Fund and serves as our fiscal agent to oversee grants administration. The HIV Collaborative Fund serves as an advisory body to the HIV Young Leaders Fund, and we work closely with them in terms of learning from their experiences of a community-driven grantmaking process.
3. Can you tell us more about the Steering Committee for 2010?
There are 10 steering committee members that help to govern the fund and ensure its accountability to young people affected by HIV. Steering committee organizations include: Global Network of Sex Work Projects, Global Youth Coalition on HIV/AIDS, Global Network of People Living with HIV, The International Lesbian, Gay, Bisexual, Transgender and Queer Youth and Student Organisation, International Treatment Preparedness Coalition, Jamaica Youth Advocacy Network, World AIDS Campaign, Youth Coalition for Sexual and Reproductive Rights, Y-PEER, Young Positives, Youth R.I.S.E Click here for more information about the individual members.
4. How did the Fund decide upon advocacy, peer-based education, care & support services and community mobilization as funding priorities/focus?
The steering committee felt like these were the areas where young people could really make a difference in the HIV response - where young people could advocate for their rights and needs, where they could reach their peers, and where they could mobilise for change. As the driving funding priority across these three areas was to reach young people who are most affected by HIV, the steering committee wanted to move away from perhaps what’s been a trend of general-use funding among donors and really target young people who are most at-risk in their communities, or young people living with HIV.
"When the world adopted the GIPA Declaration during the 1994 Paris AIDS Summit, it acknowledged the importance of engaging those most-directly affected in leading the response to HIV. Young people remain most-vulnerable and, hence, necessary for successful action. That is why the Ford Foundation Global HIV Initiative dedicated 5% of its resources to young leadership, including this innovative HIV Young Leaders Fund." Jacob Gayle, Ph.D., Deputy Vice President, Ford Foundation
5. I noticed that you included two tracks of funding – one for core support and one for project support. Can you tell me about the thinking behind this?
The steering committee decided to have two funding tracks (core support and project support) to address a common problem that a lot of youth led initiatives face, which is that often donors want to fund short term projects (not core costs). Many youth-led initiatives end up being unable to meet their basic needs, such as paying staff salaries to renting office space, and in the long run they are unable to become sustainable. So we wanted to enable applicants to choose the track that made most sense to them, and hope that it was a better way to meet their needs.
6. What other discrepancies or gaps is/was the fund trying to address with this RFP?
The Fund recognizes that certain young people were still left out of important conversations, and not visible in terms of advocating for what they needed when it came to creating a better HIV response. Many of these groups are young people who face very high levels of stigma and discrimination in their communities on a daily basis, and there were few funders reaching out (to these groups) specifically. Within this we were thinking of young people living with HIV, young people who were sex workers, young people who use drugs, young transgenders, young men who have sex with men, and sometimes young women depending on the country context. We really wanted to reach out to these young people and try to build their leadership through our small grants program.
7. Can you tell us about the inaugural HIV Young Leaders Fund grantees?
The first group of grantees is incredibly diverse and includes 23 organizations from across 18 countries. Just a few examples include: the Young Mother’s Support Group in Uganda, which will bring together young mothers who are living with HIV to discuss a range of issues including their right to positive sexuality; Youth AIDS Filipinas Alliance, a group of young people that does awareness, education and anti-stigma work in their communities; and Silueta X in Ecuador, which is run for and by youngby young transgenders. Click HERE for more information about all 23 grantees.
8. What will the HYLF’s relationship be with its grantees?
We’re looking for some creative ways that we can assist them in their day-to-day work. On our application we asked a few questions around what grantees needed most in helping their organizations and their work to be sustainable. Based on that information, we’re now going to be working with our grantees to build individual support plans for each of them which will differ depending on the country, region, and on their own levels of experience. In working with partners like UNFPA and UNAIDS we’re also able to link our grantees also with country offices where they might be able to get additional technical support. A lot of the grantees mentioned on their application that they would like to be paired with a mentor, and so we’re also going to be linking members of our Community Review Panel with our grantees who expressed that need.
9. Can you talk more about the Community Review Panel (CRP)?
One of the things that’s unique about the HYLF is that all our funding decisions are made by young people, and the CRP is the body that decides on all of our grantees. It’s composed of 12 young people from 12 different countries who all have experience working on the grass-roots level, and bring with them the expertise to understand what some of the challenges are on the ground. We’re also hoping that using some of the CRP members as mentors for the grantees will be one way to connect them to someone who really understands where they are coming from. You can read more about the CRP members HERE.
10. UNAIDS Executive Director Michel Sidibe echoed the rally from the youth pre-conference that youth aren’t the leaders of tomorrow, but the leaders of today. With such a visible focus on youth in Vienna, can you tell us what excited you?
It was exciting to be around so many different young people who were all working on HIV issues, and to see and hear their ideas on what’s working and not working in the HIV response. For me, some of the highlights of the youth pre-conference were going to sessions that really addressed the specific needs of young people from key populations.
There was a session on the needs of young sex workers based on some country level research from the Global Network of Sex Work Projects did, and it was the first time that at a gathering like this where I had seen the time and space devoted to issues brought forth by young sex workers.
I think it’s always a challenge to think about how to meaningfully involve and ensure a safe space for the participation of young people from key populations, and I think for the next International AIDS conference that it would definitely be great for the YouthForce (the organizer behind Vienna’s youth pre-conference) and partners to think about how they can work to ensure that participation, so that all young people feel included.
11. During a panel in Vienna (Youth Speak Out on Sustainable Response to HIV/AIDS) you spoke to the need to bring multiple youth communities together to build a more effective HIV response. Can you expand?
Within the HIV response, you often see different people with different advocacy needs cut off and splintered from each other. In an attempt to be most effective, there’s often not a lot of dialogue for different groups to come together to figure out what they can do collectively.
It’s one of the ways in which young people think a little differently - I think they’re less focused on differences between groups and more on the similarities. I heard a lot of young people speaking in different sessions saying, “it’s not that there’s young sex workers and young drug users, it’s that there’s a young person who uses drugs who may or may not engage in sex work”, and there’s not a specific distinction that you so often hear made between these different groups. So I think that, for young people especially, you have these different networks being in constant communication and thinking about how to advocate for the rights of young people is really important.
12. What can Funders do or think about differently when engaging with youth-led initiatives?
I think there’s a lot of pressure on youth leaders to sort of always...to never ask for help, or to always know how to do everything, which is of course unrealistic. That’s where I think that more dialogue between funders and youth-led organizations would be really helpful because when youth-led organizations do have needs around financial management and monitoring & evaluation, it would be really great if they felt comfortable to speak up and say, “I’m actually confused about how to set up this monitoring & evaluation strategy to report back to you, could we discuss it and could I maybe send you my plan for you to give feedback on?” I think young people definitely need to speak up about their needs if they are going to be able to grow and become sustainable within their organizations.
I also think donors could do a lot differently as well, when it comes to interacting with youth-led organizations, including treating them more like other organizations are treated, which includes funding core costs, multi-year funding, and maintaining a healthy level of respect for their autonomy.
13. How did you get your start in this field?
As the Coordinator of the Fund I’m in charge of facilitating the grantmaking process, maintaining our relationships with donors, doing our fundraising and external communications. Previously I worked for aids2031 and for the Global Youth Coalition on HIV/AIDS (GYCA), where I taught GYCA's e-courses in Project Management, Political Advocacy, and Grantwriting/Fundraising.
I first became involved in HIV work when I was 19 though a youth-led HIV organization called the New York City Student Initiative on AIDS. It was incredible to be working with other young people who saw HIV as a social justice issue, and wanted to mobilize students in New York City to take action on it.
Without these experiences, I wouldn’t have the same perspective as to what the challenges and strengths of youth-led work on HIV can be. It definitely helped me to see that there was a need for this kind of mechanism, and that it needed to be really different from what else existed for young people.
14. What’s next for the HIV Young Leaders Fund?
We’re going to be doing a lot of strategic planning to think about how we address the huge demand for the fund, which was a little unanticipated. We released our RFP and thought we’d get maybe 500 applicants, and instead, ended up getting close to 3,000. So it’s definitely time for us to step up and evaluate how we can evolve to meet this demand.
15. Any parting words?
What is really unique about the HIV Young Leaders Fund is that it’s driven by different youth communities, and the fact that young people are involved in all levels of decision making is very, very is rare. I hope it’s something we can turn into a sustainable funding mechanism and help young people who are working in their communities to make a difference.
The HIV Young Leaders Fund is currently funded by aids2031, the Ford Foundation, UNAIDS, United Nations Population Fund, and a private donor in Norway. Caitlin Chandler manages the HIV Young Leaders Fund from Brooklyn, NY. The process for the 2011 RFP is currently underway.
To learn more, please visit www.hivyoungleadersfund.org or contact Caitlin at Caitlin@hivyoungleadersfund.org. Follow news from the Fund by becoming a fan on Facebook and following on Twitter @hivyoungleadersfund.
In this fourth installment of “10 Minutes with” FCAA is pleased to present the following interview with Robert Greenwald, Director of the Treatment Access Expansion Project (TAEP), a “national organization dedicated to advancing the rights of and access for low-income PLWHA.” Robert also serves as the founding director of the Health Law and Policy Clinic at Harvard Law School and in February 2010 was named an advisor to the Presidential Advisory Council on HIV/AIDS. More recently, Robert and his TAEP colleague Dorothée Alsentzer received the Positive Leadership Award from the National Association of People with AIDS in recognition of their landmark work in ensuring the passage of comprehensive health care reform.
As a preeminent thought-leader working and advocating at the intersection of HIV and health care reform, Robert spoke to FCAA about what has been achieved, and what’s next to be done.
Q1: Health care reform has resulted in a tremendous step forward in meeting the needs of PLWHA. What are some of the biggest successes of this bill?
RG: The Medicaid expansion represents a significant step forward. Starting in 2014, the new law eliminates – in the context of HIV – the disability requirement for Medicaid and will provide access to all non-elderly, legally documented U.S. citizens at or below 133% of the Federal Poverty Level (FPL)[1].
Next, it increases the Medicaid provider reimbursement rates in 2013-2014. What we’re seeing is that current reimbursement rates are so low that, in many parts of the country, programs that provide a tremendous amount of care to people on Medicaid are going broke and closing their doors. Finally, the fact that in the initial years the federal government is fully supporting Medicaid expansion is fantastic.
Q2: What are some of the remaining challenges?
RG: There were a number of disappointments from my perspective.
- They did not lift the 5-year exclusion on legal immigrants. Even if you are a legal resident, working and paying taxes in the United States, there is a 5-year ban on eligibility for public programs. This is not cost efficient and undermines our goal of providing early and preventive health care. What it really means is that legal immigrants are forced to rely on free care and emergency rooms rather than get the medical care they need should they become sick or disabled.
- While the increase in provider reimbursements is a positive, it is limited, and temporary (limited to the years 2013 and 2014). My guess is that Congress thought this temporary measure would keep the overall costs of health care reform down. Their expectation is once providers get this increased reimbursement rate that there will be tremendous amounts of advocacy (from the American Medical Association, etc.), and they’ll keep it going forever in subsequent legislation. I hope that happens, but in the mean time, it is of grave concern that reimbursement rates could go back down after 2014.
- In addition to being time-limited, the Medicaid reimbursement rate increase is only for primary care providers and does not address the incredibly low reimbursement rates for specialty care providers, including infectious disease doctors.
- No new mandatory minimum benefits package for Medicaid.
The way Medicaid works is that there is a range of mandated and optional benefits. As part of the Medicaid program, all states have to provide the mandated benefits but they get to choose which of the optional benefits they provide. If they choose them, then the Feds pay a certain percentage of the state’s Medicaid payment. In the wealthy states, it’s a 50-50 split, whereas in some of the poorer states, the Feds play 65% and the states pay 35% of the cost. Fortunately most of the states do provide a tremendous amount of the optional benefits. However, just to give you an idea, prescription drug coverage is considered an “optional” benefit. Clearly, optional benefits should not be optional. We’ve been fighting for years to say, you’ve got to redo this! This law was created in 1965; many of what were considered optional (then) should be mandated now, and we need a new minimum benefits package for all Medicaid beneficiaries.
It is further complicated now because you have two populations: the existing Medicaid beneficiaries and the new expansion population (all at or below 133% FPL). We were really hoping they would create a mandatory minimum benefits package for all Medicaid beneficiaries -- not just the expansion population -- and that the expansion population would get a broad benefits package. For example, we would have been quite happy if the benefits package for Medicaid was the same new benefits package that they created for private insurance as part of the exchanges[2]. If you’re on private insurance through one of the approved plans of health care reform, you will get prescription drugs, mental health, substance abuse services, preventive care, and chronic disease management. We want that all to be mandated as part of Medicaid. Not only did that not happen, the new benefits package for the expansion population is a combination of mandated and optional services. That is not good enough, and in some cases, it’s worse than the package that currently exists. In Massachusetts, for example, the new expansion beneficiaries in 2014 will get less than your traditional Medicaid beneficiaries. While the Feds are paying for all of health care reform at the beginning, over time states are going to have to pay their share; in order to cover the cost of the expansion population our fear is that states are actually going to reduce what current beneficiaries can get, and that this new expansion package is going to become the package for everybody. So not only are we disappointed that they didn’t create a new benefits package for all existing beneficiaries, but we’re concerned that they’re going to potentially end up with less. Why did they do such a great job with the benefits package for the private insurance market, but didn’t do the same great work for Medicaid?
Q3. Many in the HIV community have noted the failure to include the Early Treatment for HIV Act (ETHA, H.R. 1616, S.833) as a tremendous barrier to fully meeting the health care needs of PLWHA. Can you tell us more about ETHA, and what this omission means for PLWHA?
RG: In many ways, the approved Medicaid expansion is what the ETHA was all about. ETHA was designed to give states the option of readily amending their Medicaid eligibility requirements to extend coverage to pre-disabled poor and low-income PLWHA. Through health care reform an ETHA-like expansion will go into effect for all people with incomes below 133% FPL. We were hoping the income eligibility would be set at 200% FPL, but still the Medicaid expansion is a national mandate and in many ways better than the state option proposed within ETHA.
The real issue with not having ETHA is that we need a bridge to 2014. Expansion doesn’t go into effect until 2014, and as we know, the AIDS Drug Assistance Program (ADAP) is in crisis. If they had included ETHA in the bill, it would have given states the option, with an enhanced federal match rate (or F-MAP[3] the amount that feds pay), to expand access just to the HIV population between now and 2014. With the combined lack of ETHA and the current ADAP crisis, our federal and state governments are either going to have to come up to the plate with millions of dollars, or people are just not going to get access to their medications.
[See side-bar to right for more on ETHA]
Q4: So what are TAEP’s priorities moving forward?
RG: Essentially, the bridge to 2014 (when many of the health care reform provisions goes into effect) and the limitations even beyond 2014 are TAEP’s advocacy agenda. We are primarily focused on building a bridge to 2014 by pushing for the passage of ETHA, a $126 million emergency supplemental funding of ADAP in 2010 and enhanced Ryan White program funding for 2011-13. In parallel, our work on the Medicaid plan is focused on:
- Eliminating the 5-yr exclusion on legal immigrants;
- Increasing the Medicaid reimbursement rates for all providers (not just primary care) beyond just 2013 and 2014; and,
- Advocating for a mandatory minimum benefits package for Medicaid
Q5: What can funders do to support these efforts and implementation in general?
RG: There are so few of us who have the expertise or capacity to do HIV health care advocacy work. We are small potatoes compared to some of the really big players out there (AMA, etc); but for our size, we have strong connections and contacts in the administration and on the hill to get our issues heard. In addition to doing direct DC-based advocacy, we work to keep the HIV community informed on the status of health care access advocacy and prepare concrete suggestions and recommendations based on where policy is moving. Each time a major proposal was released, within 72 hours, TAEP would post a 10-page analysis on how it met our 10 Principles of Health Care Reform and the needs of PLWHA. We made suggestions as to how people in the community could get involved and help ensure that health care reform met the needs of people living with HIV and AIDS.
We have accomplished a tremendous amount with very few resources, but there’s a lot to be done. There are some times that you say, “how is more money going to help?” In this situation, if we had more people and more capacity, there’s no question that we could do even more. With health care reform the devil is in the details and now is the time that we need to closely monitor and influence the implementation process. This takes a tremendous effort as we need to monitor what is happening in Congress and in many federal administrative agencies. Thankfully we have an HIV Healthcare Access Working Group that helps to coordinate the efforts of HIV/AIDS organizations working on health care reform. The problem is that there is very little funding for advocacy and when it comes down to it, as to who has the expertise, capacity or funding to do the actual work and analysis, I can count them on my fingers.
Q6: Are there key areas that funder can support to ensure successful implementation of health care reform?
RG: On the national level, support of advocacy to address both implementation and the remaining limitations of PPACA should be an ongoing priority. At the same time, we need to build and support advocacy capacity at the state level. There is much work to do on the state level as states will also control implementation of health care reform. Also given state economies we need to build the advocacy capacity to defend and protect existing state Medicaid programs.
Q7: Do you have any recent examples of this type of work being done/funded?
RG: As part of our work with the State Healthcare Access Research Project, TAEP recently worked with six different state networks to apply for advocacy grants through the National AIDS Fund’s Southern Reach initiative. Four of them were awarded grants and we are working closely with them to build and support HIV/AIDS advocacy capacity in the Southeast. We are already seeing results as several governors and state legislators, despite the current economic situation, have allocated funds to address the ADAP crisis in the Southeast. In some instances this is the first time the HIV/AIDS community has received such support from elected officials. Funding to support advocacy is key to our success and we know that there is still so much more work to be done.
For more information, please visit the following presentations from the TAEP website:
1. Health Care Reform and HIV Treatment Access, Project Inform & HIV Medicine Association. April 21, 2010.
2. Advocacy after Health Care Reform, Dorothee Alsentzer, TAEP and Harvard Law School Health Law & Policy Clinic. April 26, 2010.
[2] PPACA created a new mechanism for purchasing coverage called Exchanges, which are entities that will be set up in states to create a more organized and competitive market for health insurance by offering a choice of health plans, establishing common rules regarding the offering and pricing of insurance, and providing information to help consumers better understand the options available to them. The Henry J. Kaiser Family Foundation, Explaining Health Care Reform: Questions About Health Insurance Exchanges. April 2010.
[3] The Federal Medical Assistance Percentages (FMAPs) are used in determining the amount of Federal matching funds for State expenditures for assistance payments for certain social services, and State medical and medical insurance expenditures. The Social Security Act requires the Secretary of Health and Human Services to calculate and publish the FMAPs each year.
For this third installment of “10 Minutes With…” we are extremely pleased to profile
Suzana Grego, Director of Communications & Advocacy at the Firelight Foundation. Suzana joined Firelight almost two years ago bringing with her an extensive background in high-tech public relations and human rights-based work, most recently with the New York-based International Center for Transitional Justice. In fall 2009, Firelight launched a new brand strategy and in December 2009 a new website to celebrate the beginning of their 10th year in grantmaking. Suzana shared with us how their blend of communications and advocacy is advancing their outreach strategy and helping to build the profile and capacity of their grantee-partners.
According to Suzana, Firelight’s “experience in building a social network strategy that’s integrated into a more traditional communications strategy is a good lesson for other small organizations like us that have to find ways to stretch already limited resources even further as they go out and seek new supporters.”
Below are just a few of her recommendations and lessons-learned. Or, jump ahead to our full interview!
1. A website is one of your most important faces to the world, but it will take as much time as you give it. Think of it as your base platform for building your communications–get it on the fast track and realize it can and will change during the process.
2. Be realistic about the time and resources needed to get to launch–and commit yourself. Get into deadline mode and into the habit of updating things regularly, or you can fall out of the habit (and off the radar).
3. Think about different media possibilities–not just the written word. A photo or video is easy to post and create a conversation around, and can communicate volumes.
4. Cross-pollinate! Once you have something to share, send it out across your different networks: a blog can be tweeted, then shared on Facebook. Always keep in mind your “consumers” and the different ways they want to consume your content.
5. Customize your metrics to match your project phase. If you are focused on engaging current users/stakeholders, then look at more qualitative indicators like the quality of their engagement and what actions they take as a result of it. But as you look to reach new audiences, the harder “traffic” numbers also become more important.
6. Think objectively about the “unique” value you have to offer to various audiences. Social networks can open your organization up to whole new groups of users who will be experiencing your content and resources for the first time—make sure to hold their attention and keep them coming back with useful, relevant content.
7. It’s not an exact science. Keep your eyes and ears open and learn from what you see (others doing successfully) out there.
Read on for the full interview
Why a new communications strategy? Why now?In preparation for our 10th year of grantmaking, Firelight entered into a strategic planning process in October 2008. A fundamental part of this plan is the “leverage” component, under which our organizational learning and communications and advocacy efforts would be combined to increase our overall impact. We realized that the qualitative stories and quantitative data points behind what was and wasn’t working, and what our grantees were successful in implementing and still pushing to implement were very important. That information would be critical for the ongoing improvement of our programming, as well as in fueling our communications and advocacy efforts to help us achieve our strategic goal of “
increasing the flow of resources to the grassroots in order to improve the lives of even more children, families, and communities.” While we were confident that a lot of people knew about Firelight and our model, we felt they could know more – whether they were practitioners trying to emulate our direct international grassroots grantmaking model, or other funders with resources far larger than ours that could be effectively targeted at the grassroots level.
You also did a rebranding at the same time. Can you tell us a little about this?After 10 years in the field, we realized that we had evolved as an organization (broadened our focus and our reach), and that we needed a brand more aligned with the organization we had become. We contracted a firm to help us with the process, the main part of which took about 3-4 months. In a smaller organization, it’s only natural that everyone maintains a sense of ownership, especially on something as central as the brand. But if you manage the staff and stakeholder feedback process well, it is one of the most important ingredients for a successful rebranding. In the end, we ended up with a new logo and a tagline (
Communities Changing Children’s Lives) that we not only love, but that is true to Firelight and our mission at the same time that it speaks to and engages our staff, our boards, and our diverse audience base.
[Learn more about Firelight’s new brand and tagline here]How did you launch the brand?We employed a very pragmatic, gradualist approach. We couldn’t afford to wait for all of the elements to be in place, so immediately after the logo and tagline were finalized, we published our 2008 Annual Report based on the new brand. The last eight weeks of 2009 were focused entirely on building the new website. It was a crazy time focused on developing and launching both our new website as well as our online and social network strategy, but in the end, it turned out to be a good move to put a hard time-constraint on that process because, basically, a website will take as much time as you give it. As we had spent a lot of quality, focused time developing our “communications base” and collateral material (brand, content) in 2009, I was confident that once the platform was in place, our decks would be cleared in 2010 to focus more on reaching new audiences by expanding our content and our approach.
We launched the website in late December 2009 as an unofficial “beta” of sorts, adopting an incremental improvement approach. Along the way, we consulted different stakeholders to get their initial reactions to our branding and to the site’s general look and feel, so we had a pretty good sense that we were on target. This was a very satisfying and necessary part of the process, and it seems our stakeholders appreciated the more informal but personal “survey” approach and outreach. They appreciated that an important part of what we were doing was trying to enrich our relationships with our existing corps of supporters, at the same time that they encouraged us to reach our potential of increasing our influence with new and influential audiences.
Let’s talk about social media/networks. How did this play a factor in your strategy?Shortly after the launch of our strategic plan, the economic crisis hit, and we had to take a serious look at our budgets and cut back. Our diminished communications resources forced us to start thinking in much more cost- and goal-efficient terms, which has actually turned into a very rewarding lesson learned about the importance of laser-focusing on your goals and how much can be done with limited resources. One of the first things we decided to do was to build our communications infrastructure – including our new brand and new website – to support our new five-year strategic plan. We knew from the beginning that we wanted the website to be “social network-integrated”. That’s why you’ll see, for example, the blog feed on our homepage. We designed the site to be able to automate content across multiple platforms.
Firelight’s social network strategy is divided up into two phases: 1) the first and foremost priority was to engage and enhance our relationship with existing audiences, which is why we decided to focus first on a new blog, and then secondarily on
Facebook. An important element of this first phase is our new blog (
Ubuntu), designed to share the work of our grassroots grantees serving vulnerable children and families, who are core to our mission. 2) The second phase (which we are now entering) is about using other channels and social network tools (
like Twitter, YouTube, Flickr, and Ning) to bring new audiences information and resources that are useful and interesting to them. As an important initial part of this phase, we are about to embark on a full landscape assessment of who’s out there, who cares about and is interested in the kind of work that we do, and who is saying what about the spaces we operate in (children, HIV/AIDS, poverty, etc).
What has the reaction been so far?Feedback has been very positive—one of the things I’ve heard from a lot of people, especially those that don’t know Firelight as well, is that our online footprint makes us look like a much larger organization than we actually are. This is heartening because it means that we’ve succeeded in effectively representing the breadth and depth of the amazing work of our grantees and the lessons we’ve learned from a decade of grantmaking. Still, we realize there’s a lot of room for improvement: one of the things we hope to do more of in the near future is helping our grantees raise their own profiles by bringing even more of their experiences—in their own words and voices—to our audiences here. Stakeholders are encouraged by our new direction of building an online community that connects our various audiences with a range of Firelight “voices” (including staff and board members, but especially grantees and country resource people). We’ve posted nearly 20 blogs since launch, and have tried to balance our entries by including one from a Firelight staff member and one grantee profile story each week. Our supporters are most excited by the grantee stories that relate the rich detail of who and what we fund, and the on-the-ground impact.
Why are these grantee stories important?We wanted to provide our grantee-partners with the forum (our website and blog) and training necessary to help craft and share their own stories. We’re planning a series of sessions on “writing for blogs,” how to take and upload photos, and we are also piloting a program to provide some grantees with their own Flip video cameras. Part of the sensitivity, of course, is that while our grantees are eager to engage in this effort, we know that it can be a burden on some of them. So instead of legislating an editorial calendar on everyone, what we’ve done instead is started to tier our grantee-partners, piloting those that are better equipped to be early adopters. Down the road, we hope we’ll be able to put more resources into our capacity-building program so that we can help our grantees build their own web and social network presences. We know and they’re acutely aware that it will be critical to their future resource mobilization. A critical part of our grantmaking strategy is about helping our partners get to a certain point where they’re likely to be supported by other, in some cases, larger funders. This is often a long process—we typically fund grantees for about seven years to help them build their capacity—but after they get to that point, many of them are sustainable, robust organizations.
Why is social networking important?If you’re a nonprofit seeking some sort of baseline change in the world, it’s no longer enough to focus your outreach efforts on a relatively small set of traditional influencers. This doesn’t mean you should target the “general public” as your audience. But it does mean that you have think creatively about which individual demographics you want to bring to the table to help you further your mission. And if you’re seeking a new corps of supporters, you can’t afford not to be in the social network space.
But in the end, it’s all about prioritization and sequencing. You have to be realistic about your goals and resources, and make sure that your colleagues are on board. It’s not uncommon for people to grossly underestimate the time and effort it takes to maintain an effective social network presence. But, there are ways to stay relevant and interesting while also avoiding saturation. For instance, photos and videos are very easy to post and create conversations around. It doesn’t always have to be a written piece...the different media possibilities are huge time-savers, enabling you to get a point across to your audiences in under a minute. Second, once you have something to share that’s of some value, it’s so easy to incrementally cross-pollinate your different networks. A blog is tweeted, and then shared on
Facbook, etc. Always keep in mind that different “consumers” want to consume your content in different ways.
How are you measuring success?You need to collectively brainstorm (with your program and other staff) what “success” would look like before you begin measuring; and determine at which points you continue on your path or change direction. In terms of objectives and goal setting, the kinds of metrics you use need to be customized to the phase you are currently charting. If you’re focused (as we were) on reengaging your current audience base, then you would want to analyze the way in which those visitors our interacting with your site and choose more qualitative indicators like the quality and duration of their engagement and what actions they take as a result of it. But as you look to reach new audiences, the harder “traffic” numbers also become important. While the number of new visitors to our site has increased, we are still focused on enhancing our current relationships, so it’s more meaningful for us to know that the average time visitors are spending on our site has dramatically increased, indicating that we are producing some compelling and/or useful content.
There are great (and free!) tools to help you track your progress better and more consistently, including
Google Analytics and
Facebook Insight. Both tools will give you a better understanding of who is coming to your site, and why, and what they do afterwards. This is where the link between communications and advocacy comes back into play; the metrics can tell you a lot about how your audiences are using this information: are they making a donation? Signing a petition? Joining public conversations to put pressure on policymakers? Because while raising awareness and disseminating good, useful information is extremely important, if your audiences don’t do much with it, you have to ask yourself whether you’re getting a satisfactory ROI, and also, what you could be doing differently to engage and mobilize your followers.
What surprised you? Biggest learning?|The most exciting part is the amazing cross-pollinating nature of social networks to reach far and wide but also deep. You have to be using it to fully appreciate it, but the ability to reach multiple audiences with multiple formats through a small handful of powerful tools really stretches your time and resources, as well as your impact. And the great thing is that even the optimizing and automating tools are free (e.g.
ping.fm and
hootsuite.com for cross posting).
Social networks can open your organization up to whole new audiences who will be experiencing your content and resources for the first time. This creates both a huge opportunity as well as a responsibility: if you want to grab their attention and mindshare, you’ll have to catch it with the first impression. To do this, you need to look at yourself as objectively as you can and really think about what value your organization can provide to the various audiences you’re looking to reach and influence. You’ll also need to make sure that you provide that value consistently, over a longer period of time.
Finally, don’t forget. This is still all pretty new! It’s not an exact science – there is tremendous value in keeping your eyes and ears open and learning from what you’re seeing, readjusting as you go along. Look for guidance from your peers but also from outside of your particular field/industry (e.g. the for-profit world’s focus on the consumer is something we in the non-profit world need to learn more from). A great source of good web design and content practices is the
Webby Awards – some of the best websites out there are “social network-integrated” so by checking out the nominated websites, you can learn a lot about what good social network strategies look like.
Our second edition of “10 minutes with” FCAA features an interview with Kathleen Enright, President & CEO of Grantmakers for Effective Organizations (GEO). Kathleen leads GEO’s continued and respected efforts to evaluate and highlight philanthropy’s response to the new economic landscape.
Q1: What types of organizations make up GEO? How do they become members?
KE: The GEO community includes of all type of grantmakers (including United Ways, and re-granting organizations), as well as affinity groups and regional associations that support our agenda. We currently have around 350 institutional members, ranging from very small foundations to the Bill & Melinda Gates Foundation. Membership in GEO is driven by a unique philosophical approach: organizations join GEO because they are unsatisfied with the pace of progress, and are striving to make improvements to their work that increase the impact of the philanthropic sector over the long term. We help funders recognize and embrace the changes they can make in their own work to increase the effectiveness of their grantees.
Q2: What are GEO's organizational priorities? How have they been affected by the economic crisis?
KE: Grantmakers can only succeed when those they fund achieve meaningful results, so GEO exists at the intersection of nonprofit and philanthropic effectiveness. It is our belief that smarter grantmaking leads directly to stronger nonprofits and better results. This organizational philosophy means we have to stay connected to what both sides need.
In 2005, we launched the Change Agent Project, a participatory process during which we reached out to 10 focus groups of funders and nonprofit leaders in five cities across the country. We asked each group, “What key changes would have the greatest possible impact on nonprofit performance?”
Their answers weren’t surprising. Based on the interviews, GEO identified two shared priority areas:
- The Money flow: the need for more general operating support and long-term funding as well as larger sized grants.
- Funder-Grantee relationships: how to improve productivity of the relationship and promote collaborative approaches to problem solving.
Even before the economic crisis, money was the major concern of our sector. The economy hasn’t changed GEO’s priorities; it has only increased the urgency of our actions.
Q3: In November 2008 GEO published “Smarter Grantmaking in Challenging Economic Times: Insights for Foundation Leaders,” a series of recommendations on dealing with the economic crisis. What have been some of the most interesting grantmaker responses you’ve encountered?
KE: The economic crisis left us to operate in a “changed world” for our community and sector. It shined a spotlight on the need to enact the type of real change that our sector has been discussing for years. Both sides – nonprofits and grantmakers – are beginning to reevaluate programs or policies that may be no longer relevant.
Our largest concern was how to protect the community progress that our assets exist to support. We were happy to find that many foundations have held their grantmaking steady in 2009 or have given more. Further, we found that our members were implementing a number of no-cost changes, such as releasing restriction on grants. For example, the Gulf Coast Community Foundation recently announced they were shifting their focus from project support to operational support in order to help keep “viable organizations strong in this difficult economy.”
Funders also talked about the importance of grantee relationships, and emphasized talking directly to grantees before making decisions. Kathleen Odne, Executive Director of the Dean and Margaret Lesher Foundation, has shown that small changes, such as customizing phone calls to grantees offer huge opportunities. During one such call, Kathleen learned that a food bank was nearly finished with a project to install solar panels in their building. Although the project had the potential to save almost $2,500 in monthly utilities, they didn’t have the money to complete the project. The Lesher Foundation discovered a way to put in a little bit of money that would provide long-term savings and benefits for their grantee.
(Read more examples online at: http://www.geofunders.org/economy.aspx)
Q4: Have you seen increased collaborations in response to the economic crisis? What benefits and/or challenges has your community expressed in regards to this approach?
KE: Regional associations have been rapid responders to the economic crisis, and are reaching out to convene listening sessions to help funders to adopt collaborative approaches in the community. Community Foundations, such as the Pittsburgh Foundation, have set up emergency aid funds to help the most vulnerable populations in their community.
A huge challenge with collaborations is that they aren’t always forged in a way that ensures long-term success. As a sector, we need to become better -- and more natural -- collaborative problem solvers. This concept needs to be infused in all areas of work
Q5: Is there a silver lining?
KE: Most definitely. There is real opportunity for us all to improve the way we do our work. A crisis is a terrible thing to waste. If the economy has taught us anything, it’s that we need to partner and stop doing things that are no longer productive. Not all nonprofits are created equal. Some are still in denial mode. Others are doing across the board cuts, and retrenching. The final group is actively looking for ways they can adapt to the changing reality and reinvent their approach. These are the organizations to keep an eye on. They are fluidly making the necessary decisions to come out of this crisis even more structurally sound and relevant. For my money, I’d double-down on these well-led nonprofits.
Q6: And finally, to lighten the mood, what summer movies are you most looking forward to?
KE:The latest Harry Potter. I’ve read all the books and will have a couple of nieces in tow. I can’t wait to see it!
About Grantmakers for Effective Organizations (GEO)
The mission of Grantmakers for Effective Organizations is understanding that grantmakers are successful only to the extent that their grantees achieve meaningful results, GEO promotes strategies and practices that contribute to grantee success. GEO is a powerful coalition of more than 2,000 individual members representing 350 grantmaking organizations committed to building strong and effective nonprofit organizations.
GEO was a proud beta-launch partner of the Foundation Center’s new project unveiled on July 13th: "Philanthropy In/Sight(tm),” “a one-of-a-kind data visualization platform designed for grantmakers, policymakers, researchers, or anyone seeking to understand the impact of philanthropy throughout the world.” Visit this new tool online (http://www.philanthropyinsight.org) to create “customized Google maps to explore giving patterns, emerging trends, and funding relationships globally, nationally, or at the community level.”
We are extremely lucky in this inaugural edition, to speak with David Munar, Vice President, Policy & Communications at the AIDS Foundation of Chicago (AFC), who will discuss pressing national and local policy concerns, and importantly, offers us an insider’s perspective into the Obama Administration and the Office of National AIDS Policy (ONAP). David has been with AFC for 18 years, during which time he has worked in almost every one of AFC’s departments, including grantmaking, case management, client triage and finance. David also serves as Board Chair of the National Association of People With AIDS (NAPWA), and as the Policy Chair for the AIDS Action Council.
Q1: These days it seems to be quite an anomaly to be with an organization for so long. What has kept you at AFC for 18 years?
DM: It's been a fantastic journey. HIV/AIDS isn't just a medical issue, its social construct - the way in which it interfaces with so many other challenging issues - and the diversity of the populations affected, make it such a rich laboratory for social justice work. I feel privileged to work on these issues and from so many different perspectives while at AFC. I have also been living with HIV/AIDS for 15 years, so my own personal stake in this fight clearly fuels my passion for the work. There's been a lot to do, and it's kept me engaged for all these years.
Q2: When you're reaching out to non-HIV specific organizations, do you ever have any difficulty when communicating the connection to HIV/AIDS?
DM: I see it more as an opportunity. It is incumbent upon us to raise awareness of those connections. When we take the time to make that connection known, we find allies -- many times in places we didn't expect to find them. It's also an education on both sides. In Springfield, for instance, we're working on efforts to pass legislation that would expand access to a safe and low-cost medication called Narcan® (naloxone hydrochloride), an effective overdose prevention/antidote for people who overdose from opioid drugs (i.e. morphine, heroine or OxyContin). This work came through interactions with our harm reduction and needle-exchange providers, who -- although they're having great success in preventing HIV among their clients -- are also seeing an alarmingly increasing trend in deaths by overdose. Tragically, there is this overdose medication available but it's not frequently prescribed. We're championing this bill because our needle-exchange providers brought this important issue to our attention. We believe it is essential to keep clients alive as a fundamental principle of all our work. We've had to explain the connections to HIV widely to many audiences, including not only lawmakers but also to our own HIV/AIDS advocates. Particularly now, nearing 30 years into the epidemic, it is important to keep AIDS advocates engaged and to help them see issues with a new perspective.
Q3: Speaking of related, affected communities, you recently spoke at the National Conference on LGBT Equality in a panel entitled: "The HIV/AIDS Crisis: This is What We're Doing About It!" How was the panel received?
DM: The conference was really a fantastic experience. It's the LGBT Task Force's annual conference, and over 2,000 people from across the country attended this year's conference in Denver, CO. The Task Force made a deliberative effort to highlight HIV/AIDS -- and health in general -- as one of this year's main issues, and the response was overwhelmingly positive. From local volunteers, young advocates, to people who had seen the darkest days of the epidemic -- everyone felt really moved that the conference and the discourse was coming back to HIV/AIDS. The conference attracts a lot of young advocates, and a lot of the things we covered, in terms of the history of the fight against HIV/AIDS, and the pertinent issues -- including the disproportionate impact of HIV among gay men of color men -- was brand new information to them. It was really gratifying to discover that there are allies we haven't yet tapped. It was also invigorating to see the LGBT community begin to view health, including HIV/AIDS, as an important metric to measure their own equality.
Q4: You recently presented White House Officials with a letter urging them to invest in HIV and STD prevention activities as part of the public health spending authorized by the economic stimulus package. Why do you feel this is so critical as to be included within the stimulus bill?
DM: We were really dismayed that during the debate around the economic recovery bill, some lawmakers and members of the media maligned public health activities, particularly HIV and STD prevention. We fought very hard to retain what was at one point, a $400 million set-aside for HIV and STD prevention. This later morphed into a public health and wellness account, at a high point of $5.8 billion, but was stripped down and eventually reduced to about a billion dollars. We are grateful that there was any money in there for public health at all, but we were really dismayed at how quickly the debate turned against public health, and HIV and STD services in particular. HIV and STD prevention is real work, requires a real workforce, and it's been under-resourced, everywhere. The President's whole priority around the stimulus plan was to invest in basic infrastructure, and we saw that $5.8 billion as an opportunity to put a down payment on reinvigorating a frayed public health system across the country, and on saving jobs. Our Public Health Department in Chicago has already cut about a hundred jobs, including doctors and nurses at its public clinics, and the State Health Department has held more than a dozen vacancies without any efforts to fill them for over a year. These jobs not only have a real impact on disease prevention but are also legitimate economic activity -- as legitimate as building a road or a bridge -- and we want to be sure public health benefits from economic stimulus.
It was also our fear that the this rhetoric was going to have a domino effect on the FY2009 and FY2010 budgets, and that we'd hear what we feared all along: that there's not any money. The Bush administration, at the end of their term, testified in Congress that HIV/STD services were funded only, at best, around 50% of the need. And that's the Bush Administration going to Capitol Hill and asking for a 50% increase, in order to realize any real decreases in HIV transmission. We have ample empirical evidence that our prevention investments have not reaped the kinds of outcomes that we want, but we're concerned that there won't be any progress without the political leadership saying that HIV and STD prevention is valuable, is real work and real economic activity, and should be prioritized along with everything else. It's still a fight. Of that billion dollars, about 300-350 million is set aside for immunizations, and the remainder is for community health and wellness programs. AFC is urging the U.S. Department of Health and Human Services (HHS) -- who has to determine how to spend that account -- to devote a portion of that amount to HIV and STD prevention. We also know that every disease interest (obesity prevention, diabetes, etc.) is lining up and believes that that $650 million would best be spent on their issue. We certainly accept that it should be distributed broadly, but it's still a sizable account, and there could be some core investments in HIV and STDs.
Q5: You have been a vocal advocate of Obama's appointment of Jeff Crowley as the head of the Office of National AIDS Policy (ONAP). How do you think Crowley's expertise in health care systems will shape our country's approach to HIV/AIDS?
DM: I think we've already seen some impact of Jeff being on the job for 4-5 days, for instance, there were HIV/AIDS advocates in attendance at the White House summit on healthcare reform (held March 5th) making sure that AIDS is a part of this discourse -- that's a direct result of Jeff being on the Domestic Policy Council (DPC) team. I've known Jeff for a long time and think he is a brilliant appointment. He is not only passionate about the fight against HIV/AIDS, but he's an expert on health policy, Medicaid and Medicare law, and will be a team player as the White House figures out this very complex challenge of how we improve healthcare financing and delivery in the U.S. His appointment also means that his boss, Melody Barnes, Director of the DPC, will likely be collaborating with him every day, and HIV/AIDS will not be sidelined, but rather at the forefront of figuring out this big challenge. I think it's very exciting. There are enormous political and economic challenges, but I think that Jeff's background and expertise is going to be helpful on healthcare, and in building those relationships with other key decision-makers that will help move our HIV-specific agenda forward.
Q6: We know that AFC and President (and First-Lady) Obama have long had a strong relationship. If you could ask him to do one thing about the domestic AIDS situation, what would that be?
DM: That's a tough one, there are so many. I have more of a request. As they work on a solutions for the likely 50 million Americans who are uninsured -- which includes a substantial number of PLWHA -- that the reform efforts also take into consideration the people who are on the other side of the ledger, those that are counted as insured: people on Medicaid, Medicare and private insurance. Medicaid programs are under enormous pressure right now. Reimbursement rates, almost everywhere, are ridiculously low and serve as a real disincentive for providers to accept Medicaid, or to afford to serve the most needy patients. Medicare is enormously complex -- especially the Part D program -- and for many patients with chronic diseases, it is incredibly expensive. Private insurance, for those of us who are privileged enough to have it, is increasingly expensive as well. We're also going to need to protect those safety-net programs that help provide coverage for people who fall through the cracks, like the Ryan White Care Act and community health centers. In this period of dramatic change -- and we hope there will be change -- these programs are going to be essential.
Q7: In our last e-Newsletter, our Funder Spotlight focused on our community's perspective on the economic crisis. We will be asking everyone, in this feature, to respond to the following question: What anchors you during this economic crisis? DM: I think if there's a silver lining, it's that this crisis is being broadly felt, and is showing how very similar we are in some respects -- how vulnerable and inter-connected we all are. We know that PLWHA, and those affected by HIV/AIDS, have very specific needs and challenges; but at the core, things like a living wage, a stable, safe and affordable home, nutritious food, and sense of purpose and dignity -- which for many people comes from work -- is so fundamental to all of us. I think that has some benefits for the education we're trying to do, and helps to show a different context around HIV/AIDS, and around disenfranchised populations. The economic crisis has most severely affected many of the very communities most impacted by HIV/AIDS. Impoverished communities in Chicago, for example, have been struggling with double-digit unemployment rates, high rates of crime, and off-the-chart health disparities for a long time. So for some, it's not a new reality, but now the struggle becomes all the more difficult. That's why we were championing core investments in public health and HIV and STD prevention services. It would necessitate investing in those most affected, slighted communities where the impact of the recession is felt the most. I'm excited that the Administration has framed this as trying to address some of the core drivers of systemic economic instability, including the high cost of healthcare, and that in this crisis there may be opportunities to refocus on some of the core societal problems that we've been facing for a long time. That's inspiring. The White House, in a very short six weeks, has done a good job about sending a message about hope, not just as a tagline, but hope as a tangible policy solution. That's exciting and could reap tremendous benefits for decades to come.
Q8: Now to lighten things up, what was your favorite movie of 2008?
DM: As a community organizer, I was really moved by Milk, but Slumdog Millioniare was great too, I loved them both!