Top Organizations Leading the Charge for HIV Health and Health Care Justice
Activism takes many forms. It can be as simple as signing a petition, registering for e-news, liking an organization or cause on Facebook, following and promoting a group’s work on Twitter or donating funds. Or, it can involve direct engagement from volunteering to fundraising, from participating in a demonstration to political lobbying, from advocacy to working for an organization, cause or movement. The first step is identifying which organization fits best with your goals, talents and resources. The following is a sampling of organizations from around the world with histories of success fighting for the rights, health and safety of people living with, and affected by, HIV/AIDS—as well as related conditions.
AIDS Community Research Initiative of America (ACRIA)
acria.org
ACRIA focuses on educating patients and health care providers about treatment options and guides them on how best to navigate the complexities of health care. Founded in 1991 as the Community Research Initiative on AIDS (ACRIA) by a group of physicians, activists and people living with the virus who were frustrated by the slow pace of government and academic AIDS research, the organization has since helped develop medications that allow people living with HIV to live longer, healthier lives.
AIDS Coalition to Unleash Power (ACT UP)
actupny.org | actupphilly.org | actupboston.org
ACT UP played an integral role in accelerating the development, approval and dissemination of life-sustaining drugs for people with HIV/AIDS. Known for their often shocking, and effective, demonstrations (disrupting Mass at St. Patrick’s Cathedral, human ashes thrown onto the White House lawn), the members of ACT UP continue to unite in anger engaging in direct action to end the AIDS pandemic. Their “Civil Disobedience Manual” is a must-read for any activist. The story of how ACT UP has helped saved many lives is documented in How to Survive a Plague.
AIDS.govAIDS.gov
AIDS.gov is the U.S. government’s comprehensive web site for information and resources on HIV/AIDS; it offers the latest on U.S. policy, program and funding information. It offers a user-friendly AIDS service provider tool at: www.locator.aids.gov. The site notes that while most states offer both anonymous and confidential testing, some do not. For U.S. based patients interested in obtaining anonymous testing it suggests contacting local health departments or calling 1-800-CDC-INFO
(1-800-232-04635)
AID for aids international
aidforaids.org
Aid for AIDS (AFA) operates the world’s largest medicine recycling program, redistributing unused, unexpired medication to those without affordable treatment access. Its innovative program, “¿Cuánto Sabes de VIH y Sida?” (How Much Do You Know About HIV and AIDS?), provides peer-to-peer HIV-prevention education and serves more than 100,000 teenagers in Latin America and the Caribbean annually. AFA also serves immigrant communities in New York with HIV case management, outreach and testing.
AIDS Foundation of Chicago (AFC)
aidschicago.org
Their tagline is “A Source of Hope. A Force for Change.” They are both. Their mission is to lead the fight against HIV/AIDS and improve the lives of people affected by the pandemic. They offer prevention, testing, care, housing, case management, food assistance and grants. They fundraise through events and engage in advocacy in their hometown and on Capitol Hill. Founded in 1985 by community activists and physicians, AFC is a local and national leader in the fight for effective, compassionate public policy aimed at protecting the rights and lives of people living with and at risk for contracting the virus. The AIDS Foundation of Chicago’s programs, are lead partners in the Learn | Fight | Love Alliance.
AIDS Law Project of Pennsylvania
aidslawpa.org
This nonprofit public-interest law firm based in Philadelphia, Pennsylvania provides free legal assistance to people with HIV/AIDS and those affected by the pandemic. They are the only public-interest law firm in the U.S. dedicated to HIV and AIDS. They educate the public about AIDS-related issues, train case management professionals to become better advocates for their clients with the virus and work on local, state and national levels to achieve fair laws and policies. They make home and hospital visits for clients too sick to travel. They cover a span of issues from HIV-related discrimination to confidentiality of HIV-related information, HIV testing protocols to public/private benefits, housing to wills, living wills and powers of attorney, financial/consumer debt to immigration.
AIDS Policy Project
aidspolicyproject.org
This community of advocates, political strategists, community organizers, health professionals and people living with HIV/AIDS are working together to support the development of a cure for HIV.
AIDS United
aidsunited.org
AIDS United’s mission is to end the AIDS epidemic in the United States. They pursue that goal through national, regional and local policy/advocacy work, strategic grant making and capacity building. AIDS United works to ensure all living with the virus can access the care and treatment they need to survive.
amFAR, The Foundation for AIDS Research
amfar.org
This fundraising, research and advocacy powerhouse invests directly in finding a cure for HIV/AIDS. To date, amfAR has invested more than $340 million to fund 2,000+ cutting-edge research teams worldwide. Known for their A-list celeb-studded fundraisers, they have the freedom and flexibility to respond quickly to the most promising research. Their “ARCHE” grantees work in collaboration with others and their new “Generation Cure” initiative is cultivating a new crop of leaders to help herald in the cure for AIDS.
Andrey Rylkov Foundation for Health and Social Justice (ARF)
en.rylkov-fond.org
This Moscow-based, grassroots organization was founded in 2009 and fights to promote and develop humane drug policy based on tolerance, protection of health, dignity and human rights. The foundation uses four key strategies in its work, namely: advocacy, “watchdogging,” provision of services and capacity building. It advocates for the introduction of evidence-based and internationally recognized opioid substitution treatment and for the dissemination of clean needles and syringes.
AVAC
avac.org
This non-profit founded in 1995 uses education, policy analysis, advocacy and a network of global collaborations to accelerate the ethical development and global delivery of AIDS vaccines, male circumcision, microbicides, pre-exposure prophylaxis (“PrEP”) and other emerging HIV prevention options as part of a comprehensive response to the pandemic.
Black AIDS Institute (BAI)
blackaids.org
BAI aims to correct the disproportionate rate at which African Americans contract, and die from, HIV/AIDS. Under the dynamic leadership of Phil Wilson, their motto—“Our People, Our Problem, Our Solution”—speaks to the self-empowerment and self-preservation that serve as the cornerstones of their work. In conjunction with The Kaiser Family Foundation, BAI has created a national public awareness campaign called “Greater Than AIDS” (greaterthan.org). BAI is a lead partner in the Learn | Fight | Love Alliance.
Center for Health, Human Rights & Development (CEHURD)
cehurd.org
This indigenous, non-profit, research and advocacy organization is pioneering the enforcement of human rights (such as sexual and reproductive health rights, trade and health, and the medical ethics affecting vulnerable and less-advantaged populations such as: women, children, orphans, sexual minorities, people living with HIV/AIDS, people with disabilities, refugee populations, internally-displaced people and
victims of violence, torture, disaster and conflict) as well as the legal right to health in Eastern Africa. It works to ensure that laws and policies are used as the principle tools for the promotion and protection of health and human rights. Their programs focus on human rights advocacy, community empowerment and research and documentation.
Center for Artistic Activism
artisticactivism.org
The Center is a home for artists, activists and scholars to explore, discuss, analyze and strengthen connections between social activism and artistic practice. Their goal is to make more creative activists and more effective artists. As they say, “We aim to win.”
Center for Health and Gender Equality (CHANGE)
genderhealth.org
CHANGE has advocated for the sexual and reproductive health and rights of women and girls worldwide since 1994. The U.S.-based non-governmental organization has as its mission ensuring that the U.S. foreign policies and programs protect women’s and girls’ sexual and reproductive health within a human rights framework. CHANGE believes that every person has the right to basic information, technologies and services needed to enjoy a healthy and safe sexual life free from coercion and preventable illness.
The Center for HIV Law and Policy
hivlawandpolicy.org
The Center for HIV Law and Policy (CHLP) is a U.S.-based legal and policy resource and strategy center for people with HIV and their advocates. CHLP works to reduce the impact of HIV on vulnerable and marginalized communities in the U.S. and to secure the human rights of people affected by HIV. The Center works with experts and community members from local direct service providers to identify, create and share high-quality legal and policy resources and advocacy strategies.
Elizabeth Glaser Pediatric AIDS Foundation (EGPAF)
pedaids.org
The non-profit foundation is dedicated to preventing pediatric HIV infection and eliminating pediatric AIDS through research, advocacy and prevention, care and treatment programs. Founded in 1988, EGPAF currently works in 15 countries around the world. Their global staff of more than 1,000 people (87% of whom work directly in the field) makes EGPAF a global leader in the push for an AIDS-free generation.
Equal Education
equaleducation.org.za
This is a movement of learners, parents, teachers and community members working for quality and equality in South African education through analysis and activism. Unequal educational opportunities still remain amongst the greatest obstacles to equality, dignity and freedom in today’s South Africa.
FasterCures
fastercures.org
The D.C.-based think tank works to accelerate medical solutions to the world’s most deadly diseases. They educate stakeholders about the barriers to breakthroughs, and help ensure research funding is applied for maximum impact. Their publication Back to Basics: HIV Advocacy as a Model for Catalyzing Change (fastercures.org/Publications/HIVAIDS-Change.php) offers a terrific analysis of how a diagnosis of HIV went from a death sentence to a treatable disease.
GMHC
gmhc.org
While based in New York, GMHC has national influence and reach. Founded by gay men in 1981, their diverse constituents and beneficiaries now include people of all ages, gender and sexual orientations. One of the first, and still one of the best, providers of HIV/AIDS prevention, care and advocacy, the mighty GMHC sets a platinum standard for fighting HIV/AIDS.
Greater Than Aids
greaterthan.org
The GreaterThan.org website offers one of the most comprehensive sets of resources for individuals to get informed and take action on HIV/AIDS at a variety of levels. Greater Than AIDS is a long-term, multi-platform educational media project created by the Kaiser Family Foundation in partnership with The Black AIDS Institute. Leading supporters include the U.S. Center for Disease Control, Elton John AIDS Foundation, Ford Foundation and Walgreens (a major private sector partner). Greater Than AIDS’ “Pride” initiative offers targeted media content and outreach to the LGBTQ Community in the U.S.
Health GAP
healthgap.org
The “GAP” stands for Global Access Project; they’re dedicated to ensuring affordable, life-sustaining access to care for all people with HIV/AIDS because they believe that health care is a human right. They see universal access as key to ending the pandemic globally and campaign against short-sighted policies that deny treatment to millions and fuel the spread of the virus. Health GAP is a lead partner in the Learn | Fight | Love Alliance.
HIV Prevention Justice Alliance (HIV PJA)
preventionjustice.org
Their slogan—“HIV/AIDS is not just a disease, it’s proof positive of social injustice”—says it all. They maintain that fighting against AIDS is fighting for human rights and social justice, particularly when it comes to marginalized communities. Working to herald in a paradigm shift in HIV prevention, they insist that society and our leaders address social determinants (such as poverty) that fuel viral spread. HIV PJA is a lead partner in the Learn | Fight | Love Alliance.
Housing Works
housingworks.org
New Yorkers know and love their SoHo bookstore, and trendy thrift shops. Co-founder and CEO Charles King was an early ACT UP leader. Their innovative approach to raising money to fight the dual crisis of AIDS and homelessness was helping thousands of people long before the term “social entrepreneur” became au courant. NYC-based Housing Works is also a major force in the advocacy arena in Washington, DC, and has been on the ground in Haiti since 2008.
International AIDS Vaccine Initiative (IAVI)
Iavi.org
This global not-for-profit organization focuses on the development of safe, effective, accessible, preventive HIV vaccines for use throughout the world. Founded in 1996, IAVI works with partners in 25 countries to research, design and develop AIDS vaccine candidates. The organization also conducts policy analysis and serves as an advocate for the AIDS vaccine field. It supports a comprehensive approach to addressing HIV and AIDS which balances the expansion and strengthening of existing HIV prevention and treatment programs with targeted investments in the design and development of new tools to prevent HIV. IAVI is dedicated to ensuring that a future AIDS vaccine will be available and accessible to all who need it.
International HIV/AIDS Alliance
aidsalliance.org
This innovative global partnership of 41 nationally based, independent civil society organizations and country offices, seven technical support hubs and an international secretariat work together to mobilize communities against HIV/AIDS. They support community action on HIV, health and human rights to end AIDS.
International Treatment Preparedness Coalition (ITPC)
itpcglobal.org
This global network of community organizations, local NGO’s, researchers and activists is dedicated to securing access to effective, affordable and quality treatment for all people living with HIV. They push for global scale-up of access to care; since research shows that antiretroviral HIV treatment, taken properly, can lower the risk of transmission by up to 96%, ITPC’s work protects both individual—and public—health. ITPC’s David Barr is featured in How to Survive a Plague.
Médicins Sans Frontières (a.k.a. Doctors Without Borders)
msf.org | doctorswithoutborders.org
Founded in Paris in 1971, MSF is a worldwide, self-governing movement of 23 associations. The international, independent, medical humanitarian organization delivers emergency aid to people affected by armed conflict, epidemics, natural disasters and exclusion from healthcare. MSF offers assistance to people based on need, irrespective of race, religion, gender or political affiliation. Their actions are guided by medical ethics and the principles of independence and impartiality.
ONE
one.org
A global, grassroots group with more than 3 million members, ONE fights extreme poverty and preventable diseases, particularly in Africa. ONE is known for raising public awareness and pressuring political leaders to support smart and effective policies and programs (meaning, those that actually save lives). A non-partisan org, ONE was co-founded by Bono and others focused on improving the health and well-being of the world’s most disenfranchised.
Partners in Health
pih.org
The mission of Partners In Health (PIH) is to provide what it calls “a preferential option for the poor” in health care, advancing and acting on the belief that health care is a human right. PIH began its work in Haiti and has delivered high-quality medical care and social support to the poorest of the poor living in rural Haiti for 25 years. Its groundbreaking work––providing free comprehensive HIV/AIDS treatment for the poor––is a model for public health programs worldwide. PIH now has partnership programs in numerous countries, notably Rwanda which has been cited as an historic success story by the WHO, The New York Times, The Atlantic and others. The PIH’s Take Action network offers ways to get involved in the movement for health care justice.
Pathfinder International
pathfind.org
Their mission is to ensure that people everywhere have the right and opportunity to live a healthy sexual and reproductive life. They work in more than 20 countries to provide women, men and adolescents a range of quality health services, from contraception and maternal care to HIV prevention and AIDS care and treatment. They strive to strengthen access to family planning, ensure availability of safe abortion services while improving the rights and lives of the people they serve.
Planned Parenthood
plannedparenthood.org
Planned Parenthood provides high quality, affordable reproductive and sexual health care and prevention education to millions of women, men and young people across the U.S. and in 17 countries in Africa, Asia, and Latin America. Planned Parenthood is among the world’s largest providers of confidential HIV tests, screening over 4 million people a year for sexually transmitted diseases. The Planned Parenthood Action Network is a powerful resource for those interested in learning about and supporting the organization’s regional, national and global advocacy work.
PSI
psi.org
The mission of PSI is to measurably improve the health of poor and vulnerable people in the developing world, principally through social marketing of family planning and health products and services, and health communications. Social marketing engages private sector resources and uses private sector techniques to encourage healthy behavior and make markets work for the poor.
Results
results.org
Their vision is a world where the devastating impacts of poverty no longer cripple the ability of individuals and families to sustain themselves and contribute their talents to the world in which they live—where all people have a fair chance at success. They encourage citizens to pressure their leaders for effective anti-poverty programs to receive the attention, policies, and funding they need. Their mission is to create the public and political will to end poverty by empowering individuals to exercise their personal and political power for change. Combining voices of passionate grassroots activists with strategic grass-tops efforts, they help leverage millions of dollars for programs and improved policies that give low-income people the health, education, and opportunity they need to thrive.
Save the Children
savethechildren.org
The independent organization creating lasting change in the lives of children in need in the United States and around the world is known for their commitment to accountability, innovation and collaboration. They empower communities, children and families to help themselves. Working with other organizations, governments, nonprofits, and a variety of local partners, they maintain independence and work without political agenda or religious orientation. When disaster strikes around the world, Save the Children saves lives with food, medical care and education and remains to help communities rebuild through long-term recovery programs.
The Sero Project
seroproject.com
The not-for-profit human rights organization promotes the empowerment of people with HIV, combats HIV-related stigma and advocates for sound public health and HIV prevention policies based on science and epidemiology rather than ignorance and fear. Sero is particularly focused on ending inappropriate criminal prosecutions of people with HIV for non-disclosure of their HIV status, potential or perceived HIV exposure or HIV transmission. By engaging a network of people with HIV who have been criminalized and empowering them to advocate on their own behalf and their compelling personal stories, Sero helps build a growing grassroots movement to mobilize the advocacy necessary to end HIV criminalization and promote a human rights-based approach to end the HIV epidemic.
Sex Worker Education and Advocacy Taskforce (SWEAT)
sweat.org/za<.h3>
This organization focuses on the decriminalization of sex work. Together with other civil society organizations, SWEAT advocates for the removal of all laws that prosecute sex workers. Unlike legalization, this approach involves industry regulation rather than government oversight, and acknowledges human rights for all. SWEAT’s multi-initiative approach includes media engagement, policy debate, and coalition building. It has compiled numerous issue, position, and discussion papers on sex work, current local and national laws, decriminalization, and sex work conditions.
Sex Workers Project
sexworkersproject.org
The Sex Workers Project provides client-centered legal and social services to individuals who engage in sex work, regardless of whether they do so by choice, circumstance or coercion. One of the first programs in the U.S. to assist survivors of human trafficking, it has pioneered an approach to service that is grounded in human rights, harm reduction and in the real life experiences of its clients. Serving a marginalized community, the organizations also engages in policy and media advocacy, community education and human rights documentation, working to create a world that is safe for sex workers and where human trafficking does not exist.
Staying Alive Foundation
stayingalivefoundation.org
The prevention-based org launched by MTV believes in stopping the spread of HIV before it starts by focusing on the delivery of fresh, relevant prevention messaging that breaks through to a young, global audience, arming them with the information and empowerment they need to stay safe from HIV/AIDS. They back innovative programs on the ground, by funding the creative and ambitious young leaders that run them.
Student Global AIDS Campaign (SGAC)
studentglobalaidscampaign.org
These next-gen leaders are working at college campuses across the country (85 and counting). Since they came of age in a global era, they are not only fighting for prevention and treatment access, but also the elimination of debt in the developing world and reform of global trade rules. Their media-savvy strategic campaigns are aimed at decision-makers and raising public awareness. SGAC is a lead partner in the Learn | Fight | Love Alliance.
Treatment Action Campaign (tac)
tac.org/za
Founded in 1998 in Cape Town, TAC advocates for a unified, quality health care system to provide equal access to HIV prevention, care and treatment services for all people. Their mission is to ensure that every person living with HIV has access to quality comprehensive prevention and treatment services to live a healthy life. With more than 16,000 members, 267 branches and 72 full time staff members, TAC has become the leading civil society force behind comprehensive health care services for people living with HIV/AIDS in South Africa. Since 1998, TAC has held government accountable for health care service delivery; campaigned against official AIDS denialism; challenged the world’s leading pharmaceutical companies to make treatment more affordable and cultivated community leadership on HIV and AIDS. TAC has received numerous international accolades, including a nomination for a Nobel Peace Prize in 2004. In 2006 the New York Times named TAC, “the world’s most effective AIDS group.”
Treatment Action Group (TAG)
treatmentactiongroup.org
The independent AIDS research and policy think tank comprised of science-based treatment activists fights for better treatment, education and access to care for people with HIV. They also focus on accelerating vital research and effective community engagement with research and policy institutions in pursuit of vaccines and a cure. TAG’s indomitable Mark Harrington is featured in How to Survive a Plague.
Urban Justice Center
urbanjustice.org
For 29 years, the Urban Justice Center has served New York City’s most vulnerable residents through a combination of direct legal service, systemic advocacy, community education and political organizing. They assist clients on numerous levels, from one-on-one legal advice in soup kitchens, to helping individuals’ access housing and government assistance, to filing class action lawsuits to bring about systemic change. They represent the most deprived and abused people in society, including members of the working poor, and issues related to discrimination and oppression.
Universities Allied for Essential Medicines (uaem)
uaem.org
This organization believes that universities and publicly funded research institutions will be part of the solution to the access to medicines crisis by promoting medical innovation in the public interest and ensuring that all people regardless of income have access to essential medicines and other health-related technologies. The not-for-profit, rooted in a global movement of university students promotes access to medicines and medical innovations in low- and middle-income countries by changing norms and practices around academic patenting and licensing, ensures that university medical research meets the needs of people worldwide and empowers students to respond to the access and innovation crisis. Comprised of committed students from all over the world, supporters of UAEM fight for social justice and health equity, for millions of people do not have access to essential medicines.
Women’s Legal Centre
wlce.co.za
The non-profit, independently funded law centre was started by a group of lawyers who seek to achieve equality for women in South Africa. As access to justice is largely inaccessible to poor women, particularly black women, the WLC plays an important role in litigating in their interest and providing them with access to free legal advice. The Centre has identified 5 strategic focus areas. They are: violence against woman, fair access to resources in relationships, access to land/housing, access to fair labor practices and access to health care.
World Health Organization (WHO)
WHO.int
The World Health Organization's (WHO) goal is to build a better, healthier future for people all over the world. Working through offices in more than 150 countries, WHO staff work side by side with governments and other partners to ensure the highest attainable level of health for all people.
Together they strive to combat diseases – infectious diseases like influenza and HIV and noncommunicable ones like cancer and heart disease.
WHO keeps a close eye on health trends, looking out for new threats and for new opportunities to improve public health. They gather the world’s top experts to examine critical health issues, define the best solutions and deliver and implement the strongest recommendations. They help countries prepare for emergencies and act when they strike. Underpinning all they do, is a shared effort to build strong health systems and achieve universal health coverage.
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