The following resources are listed in order to assist grantmakers in becoming and staying better informed about HIV/AIDS issues; help funders learn about the various organizations and entities addressing HIV/AIDS; suggest the many organizations and entities that can provide fertile ground for collaborations in the fight against the pandemic.
Domestic Organizations/Listings
- AEGiS (AIDS Education Global Information System)
AEGiS offers a comprehensive web site that provides information on the basics of HIV treatment, and links to a wide variety of organizations and media sources.
- AIDS.gov AIDS.gov seeks to improve access to Federal HIV/AIDS information programs serving minority and other communities most at-risk for, or living with, HIV, through a variety of new media channels, and to support the use of new media tools by Federal and community partners.
- Henry J. Kaiser Family Foundation (KFF)
KFF is a non-profit, private operating foundation focusing on the major health care issues facing the nation. The Foundation is an independent voice and source of facts and analysis for policymakers, the media, the health care community, and the general public.
- HIV InSite (University of California at San Francisco)
HIV InSite has sections on the medical, prevention, policy, and statistics related to HIV and AIDS. Its AIDS Knowledge Base is an on-line textbook on AIDS.
- POZ.com The most visited online resource for people living with HIV/AIDS. The site chronicles the HIV epidemic, both in the States and overseas. POZ.com provides information about HIV/AIDS news, treatment, and prevention.
- AIDSmeds.com AIDSmeds.com is dedicated to providing people living with HIV the necessary information they need to make empowered treatment decisions.
- statehealthfacts.org (KFF)
This resource allows site visitors to compare HIV/AIDS state statistics on new and cumulative AIDS cases, AIDS case rates, persons living with AIDS, AIDS deaths, HIV infections, HIV testing statistics and policies, additional AIDS-related state policies, Ryan White funding and funding for HIV prevention, and AIDS Drug Assistance Programs, including budget, client, and expenditure data.
- The Body The Body is an HIV/AIDS information resource web site operated by Body Health Resources Corporation. It offers chat rooms, references services, on-line libraries, and links to other information sources.
Global Organizations/Listings
- European AIDS Treatment Group (EATG) EATG works to provide the fastest possible access to state of the art medical products, devices and diagnostic tests that prevent or treat HIV infection or improve the quality of life of people living with HIV, or who are at risk of HIV infection.
- European HIV/AIDS Funders Group (EFG) EFG, FCAA’s sister organization, is a knowledge-based network dedicated to strengthening European philanthropy in the field of HIV/AIDS. The group aims to mobilise philanthropic leadership and resources to address the global HIV/AIDS pandemic and its social and economic consequences and to promote an enabling environment for independent giving in this field.
- Pan American Health Organization (PAHO): AIDS and STI (Pan American Health Organization)
This resource provides guidelines and reports related to HIV/AIDS surveillance, prevention and control, about PAHO activities in North and South America, and a listing of general information and links. PAHO is a regional office of the World Health Organization (WHO).
- UNAIDS (United Nations)
UNAIDS, the Joint United Nations Programme on HIV/AIDS, brings together the efforts and resources of ten UN organizations that are active in the global AIDS response. UNAIDS has five focus areas including: leadership and advocacy, strategic information and technical support, tracking monitoring and evaluation, civil society engagement and mobilization of resources, and works on the ground in more the 75 countries world wide. Their website provides information and resources related to UNAIDS programs as well as information about HIV/AIDS worldwide.
- World Health Organization: HIV Infections
As the directing and coordinating authority on international health, the World Health Organization (WHO) takes the lead within the UN system in the global health sector response to HIV/AIDS. The HIV/AIDS Department provides evidence-based, technical support to WHO Member States to help them scale up treatment, care and prevention services as well as drugs and diagnostics supply to ensure a comprehensive and sustainable response to HIV/AIDS. Their website provides information and resources related to WHO programs as well as information about HIV/AIDS worldwide.
- Médecins Sans Frontières (MSF) MSF is an international, independent, medical humanitarian organisation that delivers emergency aid to people affected by armed conflict, epidemics, healthcare exclusion and natural or man-made disasters.
U.S. Government and Agencies
- Office of National AIDS Policy (ONAP). ONAP is part of the White House Domestic Policy Council and is tasked with coordinating the continuing efforts of the government to reduce the number of HIV infections across the United States. The Office emphasizes prevention through wide-ranging education initiatives and helps to coordinate the care and treatment of citizens with HIV/AIDS.
Approaches and considerations in HIV/AIDS grantmaking collaborations
The following is a brief overview of eight considerations and related resources for HIV/AIDS grantmaking collaborations. This summary is offered to encourage collaboration among grant-makers on funding related to HIV/AIDS. Download this collaborations information in PDF form.
1. Consider the opportunities for collaborating.
In the global AIDS effort, grantmakers have many opportunities to come together to multiply their efforts as catalysts for change. Where public funds and community resources are insufficient and where political prohibitions related to sex, drugs, and other issues prevent good public health practice related to HIV/AIDS, philanthropic collaborations are needed to support cutting-edge interventions and replication of demonstration projects, sustaining vital efforts in the absence of broad political and public health acceptance, and sustainable local funding.
Grantmakers can also work together to catalyze innovation in HIV/AIDS programming. In the history of HIV/AIDS, charitable grants have helped launch pioneering AIDS research, supported honest sexual and reproductive health education, supported drug-related harm reduction, and supported the empowerment and advocacy of those most vulnerable to HIV infection and AIDS.
Time and again, private funding has supported important social, political, and public health change, helping communities to hold governments and the private sector accountable to public health interests through policy research, media and communications, litigation and legislative endeavours, and by supporting community organizing.
2. Communicate widely with potential partners.
Thousands of non-governmental institutions provide charitable funding for HIV/AIDS efforts around the world, particularly in high-income countries. These grantmakers include private foundations, family foundations, community foundations, corporate grantmaking programs, and major grantmaking charities. All of these philanthropic institutions regularly collaborate with each other and with other types of funders, including governments and individuals.
3. Define collaboration in ways that address the need.
FCAA encourages a wide range of collaboration in HIV/AIDS grantmaking, in ways that best suit the funders and funding needs. As three examples:
- Grantmakers can choose to fund independently, but seek collaborations for the purpose of information exchange, co-learning, and strategic alignment.
- Grantmakers can choose to invest in common funds (pooled funds) for the purpose of re-granting.
- Grantmakers can come together in joint ventures to combine resources and directly fund and operate programs, particularly to raise the profile of an issue, to develop new ideas or innovative programs, and/or when suitable grantees cannot be identified.
For more reading about defining funder collaborations:
- Moving Ideas and Money : Issues and Opportunities in Funder Funding Collaboration. Ralph Hamilton. Commissioned by the Funders Network for Smart Growth and Liveable Communities, February 2002. Accessible at www.fundersnetwork.org
- Real Collaboration: A Guide for Grantmakers. La Piana, David. The Ford Foundation, 2001. Accessible at www.lapiana.org
- Philanthropies Working Together: Myths and Realities. Foundation Center, 2005. Accessible at www.foundationcenter.org
- Cooperation, Coordination, and Collaboration: A Continuum of Partnerships. Vince Hyman, Fieldstone Alliance. Accessible at www.fieldstonealliance.org
- Six Components of an Alliance. Vince Hyman, Fieldstone Alliance. Accessible at www.fieldstonealliance.org
4. Connect with local grantmakers and communities for engagement and support.
In HIV/AIDS grantmaking, local collaborations offer opportunities to share knowledge, resources, and control over funding decisions. Collaboration with local partners can also increase a local base of support and potential for programmatic sustainability. Many HIV/AIDS collaborations and community-based foundations around the world can offer important experience in engaging local partners and communities in grantmaking processes and decisions.
For more reading about local and community-based grant-making:
- Community-Driven Grantmaking: Four Steps. Vince Hyman, Fieldstone Alliance. Accessible at www.fieldstonealliance.org
- Foundations and Comprehensive Community Initiatives: The Challenges of Partnership. Prudence Brown and Sunil Garg, Chapin Hall Center for Children. Chapin Hall Publications, 1997. Accessible at www.chapinhall.org or www.nonprofitresearch.org/usr_doc/BrownGarg.pdf
- The DOs and DON’Ts of Working with Local Funders. Alice C. Buhl and Charles Fancher. Association of Baltimore Area Grantmakers, 2005. Accessible at www.grantcraft.org
- Local Donor Collaboration: Lessons from Baltimore and Beyond. Alice C. Buhl. Association of Baltimore Area Grantmakers, 2004. Accessible at www.grantcraft.org
5. Consider partnering with intermediary partners to assist in re-granting.
During the past two decades, the global effort against HIV/AIDS has grown in its size, reach, and complexity. Even when HIV/AIDS-related grantmaking is focused on one issue, population, or geographic region, it can be a challenge to maintain a current and detailed knowledge about the landscape of potential grantees and funding opportunities. Many grantmakers, both large and small, have found it useful to partner with HIV-focused charities and grantmaking intermediaries to augment the specialized knowledge of donors and to administer grantmaking processes.
For more reading about working with intermediaries:
- Working with Intermediaries: Global Grant Making through Partner Organizations. GrantCraft, 2007. Accessible at www.grantcraft.org
- Toward More Effective Use of Intermediaries. Foundation Center, 2003. Accessible at www.foundationcenter.org
6. Consider partnerships involving grantmakers from multiple sectors.
Philanthropic grants are made by a diverse range of funders, including privately endowed foundations, family foundations created from individual or family wealth, corporate grantmaking programs, community foundations, and major non-governmental charities and faith-based organizations. Each of these types of funders draws on different resources, motivations, levels of accountability, and areas of expertise.
For example, corporate grantmakers around the world provide significant financial support for HIV/AIDS programs, and also contribute an untold amount of in-kind products and services, volunteers, and/or other form of charitable support. For-profit companies can be a valuable source of professional expertise and resources from the fields such as banking, marketing, media, and organizational management.
For more reading about specific sectors of philanthropy:
7. Consider participating in funder affinity groups and networks.
Funder networks provide a platform where grantmakers can meet each other, receive information and support, and engage in collective action for funding, policy, and public information.
For more reading about funder networks and affinity groups:
- Council on Foundations - listing of funder affinity groups and regional networks. Accessible at www.cof.org
- European Foundation Center – listing of region-focused funder networks and thematic funder networks. Accessible at www.efc.be
- Collaboration Through Funder Networks. Steven LaFrance. Grantmakers for Effective Organizations (GEO), 2004. Accessible at www.geofunders.org
- Milestones for Effective Funder Networks. Steven LaFrance. Grantmakers for Effective Organizations (GEO), 2004. Accessible at www.geofunders.org
8. Be adaptable in forging and managing collaborative relationships.
In the field of HIV/AIDS grantmaking, many funders have gained practical experience in creating and managing relationships and partnership structures. There is no single recipe for how to collaborate, but a strong collaboration does rest on at least four core questions:
- Who are the right people to lead the collaboration? All successful collaborations rest upon strong relationships between a core set of leaders with a shared vision of what should be accomplished.
- What are the goals of the collaboration? Any collection of grantmakers will have a diverse array of organizational goals, audiences, and mechanisms of accountability, but all good collaborations will have a clear sense of common purpose, usually with written objectives, agreements, guidelines, and documentation of activities and outputs.
- How is the collaboration best governed? Grantmaking partners bring different levels of funding, expertise, and engagement to collaborations. Collaborations therefore operate on varying levels of funds, staff, materials, and donor engagement. In some pooled funds and joint ventures, all major decisions are made collectively by collaborating funders, while in other collaborative efforts, decisions are delegated to one partner, an intermediary, or to a localized or community process.
- How should the collaboration adapt to change? Collaborations are usually impermanent; they are formed to achieve change and then adapt or disband as that change is achieved. Collaborations therefore need to incorporate an ability to adapt to change, including processes and mechanisms for partners to communicate and negotiate change.
For more reading about forging and managing collaborations:
- Putting Heads Together: Learning From Funder Collaboratives. Joseph A. Connor, Chrissa Harley Ventrelle, and Stephanie Kadel-Taras. Excerpted from article published in Foundation News and Commentary 41, no. 2 (March/April 2000): 44–47. Accessible at www.thecollaboratory.us/collaboratorycs/paper2.html
- Four Keys to Collaboration Success. Carol Lukas and Rebecca Andrews. Fieldstone Alliance. Accessible at www.fieldstonealliance.org/client/client_pages/tools.cfm#Collab
- The Nimble Collaboration: Fine Tuning Your Collaboration for Lasting Success. Karen Ray. Amhurst Wilder Foundation, second edition 2003. Excerpts accessible at www.fieldstonealliance.org/client/client_pages/tools.cfm#Collab
- Can This Collaboration Be Saved? Twenty Factors That Can Make or Break Any Group Effort. Paul Mattessich. Accessible at www.nhi.org/online/issues/129/savecollab.html
- Collaboration: What Makes It Work. Paul Mattessich. Wilder Research Center, Saint Paul, MN, 2002. Accessible at www.wilder.org/pubs
- Collaboration Handbook: Creating, Sustaining and Enjoying the Journey. Michael Winer and Karen Ray. Fieldstone Alliance, 8th edition 2005. Excerpts accessible at www.fieldstonealliance.org
- Patterns of Cooperation Among Grantmakers. Buhl, Alice. Council on Foundations, 1991. Accessible at www.cof.org
Below please find resources to help grantmakers better navigate the intersection between HIV and health care reform. Also find a list of foundations, affinity groups and non-philanthropic resources for information on health reform and implementation. If you have a resource you think would be helpful for the sector, please submit at info@fcaaids.org.
Source: “Health Care Reform and HIV Treatment Access,” April 2010 presentation by Project Inform and the HIV Medicine Association.
HIV & Health Reform
- HIV Health Care Access Working Group
Coalition of national, state and community-based organizations dedicated to advancing reform for PLWHA. E-mail lhanen@nastad.org to join.
- National Alliance of State & Territorial AIDS Directors (NASTAD)
On May 24, 2010 NASTAD published volume 1 of “HIV/Hepatitis Health Reform Watch,” a new resource and source of updates on how health reform pertains to HIV/AIDS and hepatitis programs. NASTAD also offers an excellent and comprehensive resource document with additional information on reform.
Follow on Twitter: @NASTAD
- ADAP as TrOOP - Dose of Change [NEW Content!]
Among the myriad provisions of the historic health care reform legislation past this spring is a policy change that (beginning in 2011) will allow struggling state AIDS Drug Assistance Programs (ADAPs) transition beneficiaries to Medicare Part D. This is accomplished by allowing ADAP expenditures count towards Medicare Part D true out-of-pocket costs. Dose of Change hosted a webinar with policy experts John Coburn of Health and Disability Advocates and Ann Lefert of National Alliance of State and Territorial AIDS Directors to help AIDS advocates prepare for this coming change.
Download the audio recording and slides from this informative July 2010 webinar.
Foundations/Affinity Groups as Resources on Health Care Reform*
- Kaiser Family Foundation
Kaiser Health Reform Gateway
Summaries, fact sheets, analysis and timelines on health reform implementation. Find polls on the public’s awareness of the health reform bill, a glossary of related terminology, and in-depth info on key provisions (e.g. Part D, exchanges and subsidies).
Health Reform Fact Sheet – Kaiser State Health Facts
Find customizable state fact sheets on health care reform
Follow on Twitter: @KHNews and @KaiserFamFound
- Grantmakers in Health (GIH)
GIH staff is continually posting resources from government agencies, foundations, nonprofits, and others to the newly added Health Reform section of the GIH Web site. The section highlights reports and analyses, as well as examples of funders' activities. Summaries of GIH audioconferences and Webinars are also posted.
- Robert Wood Johnson Foundation
Health Reform resources. Among other items, Health Reform News Digest, policy briefs & analysis, population-specific issues briefs and state-focused case studies.
Follow on Twitter: @RWJF
- The CommonWealth Fund
Health Reform resources. Among other items, find the results of a survey: “Health Care Opinion Leaders' Views on Health Reform, Implementation, and Post-Reform Priorities,” and a featured podcast on “Health Care Abroad and Reform at Home—Controlling Health Care Costs."
Follow on Twitter: @commonwealthfnd
*For a longer list of foundations involved with health care reform, please visit GIH.
Information Resources on Health Reform
- HealthReform.gov
Administration website with information on the new law, including an ongoing Q&A forum. In addition to a blog, an interactive map with state-specific overviews, find “How it Helps You” community-specific fact sheets (e.g. women, adults, children, small businesses, etc.).
Follow on Twitter: @HealthReformNow
- HealthReformGPS
A new high-level guide to implementation. Health Reform GPS is a joint project of the Robert Wood Johnson Foundation and the Hirsh Health Law and Policy Program of the George Washington University School of Public Health and Health Services.
Follow on Twitter: @healthreformgps
- FamiliesUSA
Find summaries, fact sheets, issue briefs and talking points on reform and implementation, as well as in interactive state map that shows estimations of future health coverage and lives saved based on the new law.
Follow on Twitter: @FamiliesUSA
- Center for Medicare Advocacy
The Center for Medicare Advocacy, Inc. is a national non‑profit, non-partisan organization that provides education, advocacy, and legal assistance to help elders and people with disabilities obtain Medicare and necessary health care. The Center was established in 1986. Site includes policy analysis and beneficiary information on the law’s impact on Medicare, including part D.