PLATINUM2024

T A G TREATMENT ACTION GROUP INC

aka TAG   |   New York, NY   |  www.treatmentactiongroup.org

Mission

Treatment Action Group (TAG) is an independent, activist, and community-based research and policy think tank committed to racial, gender, and LGBTQ+ equity; social justice; and liberation, fighting to end HIV, tuberculosis (TB), and hepatitis C virus (HCV). TAG catalyzes open collective action by affected communities, scientists, and policymakers to ensure that all people living with or impacted by HIV, TB, or HCV — especially communities of color and other marginalized communities experiencing inequities — receive life-saving prevention, diagnosis, treatment, care, and information. We are science-based activists working to expand and accelerate vital research and eff TAG catalyzes open collective action by all affected communities, scientists, and policy makers to end AIDS, TB and HCV.

Ruling year info

1993

Executive Director

Mr. Mark Harrington

Main address

90 Broad Street Suite 2503

New York, NY 10004 USA

Show more contact info

EIN

13-3624785

NTEE code info

AIDS (G81)

Lesbian/Gay Rights (R26)

AIDS (H81)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

As TAG nears 30 years of activism and advocacy, and amidst the COVID-19 pandemic, our mission is more vital than ever. A quarter-century of progress promoting research, prevention, and treatment has advanced the struggle against HIV/AIDS, tuberculosis (TB), and hepatitis C (HCV), but the world is still far from ending these syndemics or the racist and problematic social, political, and economic injustices that allow them to persist.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

HIV

TAG’s HIV Project works to maximize equitable, affordable access to the tools, services, policies, and approaches to care that we know can end HIV. Ending the Epidemic (EtE) advocacy is at the core of the HIV Project’s work, from driving the nation’s first EtE initiative in New York to leading the Act Now: End AIDS coalition’s support for partners in heavily burdened jurisdictions in the Southern U.S. TAG’s HIV and policy teams tackle issues around drug pricing, funding for evidence-based HIV programming, access to healthcare, and policies that promote safe, inclusive environments free of stigma and discrimination for people to seek prevention and care for HIV and related infections, including sexually transmitted infections.

TAG’s HIV Project leads research activism and promotes community engagement to ensure that people living with HIV everywhere have more options including, ultimately, a safe and effective HIV vaccine and a cure that’s scalable, affordable, and can be used worldwide. TAG’s HIV Project recognizes that even the most effective existing prevention and treatment interventions have shortcomings. To this end, TAG tracks the antiretroviral, cure, immune-based therapy, and prevention pipelines, and plays a vital leadership role in basic science, vaccines, and cure advocacy. Our HIV cure-related clinical trials website listing, updated monthly to provide information on studies and their results, is widely cited by researchers and partners in scientific papers and in conference presentations. The HIV Project also advocates for appropriate interventions for people who, despite HIV treatment, still have poor immune system recovery. Central to this work is ensuring legislators and policy makers understand the need for research funding, and how important it is to make decisions based on scientific evidence.

Population(s) Served

Though preventable and curable, tuberculosis (TB) is the leading cause of death of people with HIV, and the leading infectious killer globally (prior to COVID-19). Recognizing that much more progress could be made if existing tools were fully implemented, and that more research is needed to end TB, TAG’s TB Project strengthens evidence-driven and human rights-based advocacy both for better TB research, and for high-quality programs and policies worldwide, that meet the needs of affected communities.

TAG’s TB Project educates, mobilizes, and empowers communities to increase community understanding of TB and to catalyze action to reduce new infections, deaths, and suffering from TB and TB/HIV. The Project works with community advocates (including community advisory boards), researchers, policy makers, developers, and donors to ensure needs-driven research to improve options for TB prevention, diagnosis, and treatment. The TB Project publishes an annual report on TB Research Funding Trends, and advocates for all governments of the world to step up and contribute their “fair share” investments in TB R&D.

The TB Project works around the world to ensure transparency and broad, equitable, affordable access to proven interventions, from early in the research process through regulatory approval to global and national guidelines development and product pricing. TAG’s Policy team supports the TB Project in educating U.S. legislators on TB priorities, and leads domestic work at the local, state, and national level to support ambitious and evidence-based programming to end TB.

Population(s) Served

Globally, over 71 million people are estimated to have hepatitis C virus (HCV). Despite the availability of all-oral, short-course direct-acting antivirals (DAAs) that treat all HCV genotypes, and nearly half a million people die from this preventable, curable infection.

The HCV Project has been at the forefront of a global HCV education and advocacy movement, working in collaboration with affected communities, scientists, government, and drug companies to make life-saving information, high quality and affordable testing and cures, and supportive environments for underserved populations universally available. This includes tracking the pipeline for HCV innovations, including the latest pangenotypic treatments, diagnostics, and long-acting injectables, and increasing communities’ diagnostics and treatment literacy. Globally, TAG provides technical assistance to build leadership capacity for advancing national elimination campaigns and amplifying community voices—especially those of key populations such as people who use drugs, sex workers, prisoners, migrants, and men who have sex with men—in planning and policy development.

TAG’s HCV Project aims to overcome barriers to access—from limited donor funding for HCV, to sobriety and adherence restrictions imposed by governments and payers, to patent and pricing barriers, to limited voluntary licensing and delays in drug registration by originator companies. The HCV Project advocates for harm reduction and drug decriminalization efforts, including support for overdose prevention and safe consumption sites, as injection drug use without access to safe materials is a major factor in HCV transmission.

In the U.S., TAG’s policy team works at the local, state, and national levels: advocating for viral hepatitis funding, championing coverage for people who use drugs, incarcerated or otherwise marginalized people, encouraging volume-based pricing deals for DAAs, strengthening national surveillance and supporting community engagement. TAG’s advocacy helped advance coverage for universal adult HCV screening and drive New York State’s commitment to eliminate HCV—the first in the nation!—with TAG participating in the resultant statewide HCV Elimination Task Force.

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of viewings and downloads of TAG's signature publications: Pipeline Report and TAGline

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with diseases and illnesses

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2019, TAG re-designed our website which contributed to a change in the metrics.

Number of publications/briefs/reports distributed/viewed in NYS and nationally around HIV End the Epidemic (EtE) initiatives

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Numbers of stakeholders involved in Southern States End the Epidemic (EtE) Strategy

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of grants received

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

TAG envisions the end of the HIV, TB, and HCV pandemics with the discovery, development, and worldwide dissemination of safe and effective diagnostics, preventives, and cures through public health structures that end systemic harms and promote human rights, and that are developed by the diverse communities most affected by these conditions. This vision will be realized based on data and science, and achieved through community engagement, distributive justice, and equitable access to the benefits of science.

Treatment Action Group (TAG) is an independent, activist, and community-based research and policy think tank committed to racial, gender, and LGBTQ+ equity; social justice; and liberation, fighting to end HIV, tuberculosis (TB), and hepatitis C virus (HCV). TAG catalyzes open collective action by affected communities, scientists, and policymakers to ensure that all people living with or impacted by HIV, TB, or HCV — especially communities of color and other marginalized communities experiencing inequities — receive life-saving prevention, diagnosis, treatment, care, and information. We are science-based activists working to expand and accelerate vital research and effective community engagement with research and policy institutions for an end to the HIV, TB, and HCV pandemics.

Our theory of change centers on the premise that achieving the quality, high-impact science and care needed to end these pandemics requires increased funding, enabling policy environments, and engaged communities. These factors depend on advocacy grounded in human rights and led by research-literate activists who follow the science and can represent research and policy needs to governments and developers, and serve as a bridge back to affected communities.

TAG's work to promote and expand efforts to sustainably end the HIV, HCV, and TB pandemics, is based on the following key strategies:
1. Increase funding for research and programs to end these pandemics:
-Build a strong evidence base for advocacy in support of increasing R&D funding
-Promote advocacy toward meeting community-determined funding targets
-Educate policymakers to inform US and other countries' appropriations for R&D and programming
2. Create an enabling policy environment
-Coordinate advocacy efforts and messages among key partner organizations and coalitions in order to deepen and expand sources of funding for research and programs
-Partner with coalitions and support the capacity of affected communities in the U.S. and globally to advocate with policymakers in support of funding for research and a needs-driven, people-centered research and policy agenda
-Facilitate stronger links between researchers, health departments, and advocates
-Influence legislation
-Track the pipelines for new diagnostics, curative and preventive drugs, and vaccines
3. Support community engagement in R&D
-Coordinate community advisory boards
-Develop and disseminate literacy materials to capacitate communities on fundamentals of diseases, research, policy, advocacy
-Influence research agendas and provide community input to research sponsors
4. Support implementation of evidence-based research outcomes
-Translate key scientific advances into actionable messages for communities and policymakers
-Participate in WHO, CDC, state-level guideline development
-Advocate for ending the epidemics through uptake of innovations
-Advocate for the availability, affordability, and accessibility of innovations

We are science-based activists working to expand and accelerate vital research to end TB and to promote effective community engagement with research and policy institutions. TAG builds bridges between scientists, grassroots advocates, and policy makers. We equip activists with the information they need to advocate for TB research and access to its benefits. TAG translates complex scientific concepts and developments into actionable, evidence-based campaigns and knows how to engage policymakers on complex technical topics.

During the early 1990s, TAG members advocated with government scientists, drug company researchers, and U.S. Food and Drug Administration officials to speed the development of new HIV therapies. TAG produced an influential policy report recommending government investment in basic science, which catalyzed increased funding to the U.S. National Institutes of Health and the reorganization the national AIDS research effort. TAG helped reform the FDA’s regulation of new drugs for HIV and related infections, creating faster but still rigorous pathways, such as parallel track and accelerated approval. These reforms led to the development and approval of highly active combination antiretroviral therapy in 1996. Since then, the FDA has approved over 40 lifesaving treatment options for HIV.
In the early 2000s, TAG began work with international partners to support HIV treatment literacy and equitable access to innovations for affected communities around the world. Because of these partnerships, TAG began applying its research and access activism to address the impact of tuberculosis (TB) around the world. Soon after, TAG also added viral hepatitis to its portfolio, given high rates of coinfection among people with HIV.
In the 2010s, TAG helped pioneer in New York the first-ever Statewide commitments to end HIV, and later HCV. TAG’s advocacy has contributed to a near tripling in global investment in TB research and development, resulting in several treatment, prevention, and diagnostic improvements (https://www.treatmentactiongroup.org/resources/tbrd-report/tbrd-report-2020/). TAG has contributed to evidenced-based guidelines from the CDC and the WHO in the treatment and prevention of HIV, TB, and HCV.
Throughout TAG’s history, building collective power through meaningful community engagement has been at our core. TAG remains committed to working alongside communities and policymakers to advance a research and policy agenda grounded in science, justice and equity, and human rights, to end the HIHIV, TB, and HCV epidemics.
You can read more about TAG’s legacy and accomplishments here: https://www.treatmentactiongroup.org/publication/about-tag-the-legacy-and-future-of-activism-to-catalyze-the-end-to-hiv-aids-tuberculosis-and-hepatitis-c/ and here: https://www.treatmentactiongroup.org/wp-content/uploads/2019/11/tagline_11_2019_intro_regime_change.pdf

Founded in New York City during the darkest days in the global struggle against HIV, TAG has been pivotal in building a strong and effective national and international response to the pandemic. In the 1990s, TAG led efforts to expand and accelerate research on, access to, and approval of protease inhibitors, which unlocked the key to effective combination anti-HIV treatment in 1996. After their approval, AIDS deaths in the U.S. and other developed countries dropped by 67% in just two years.

In the decade from the year 2000, TAG led efforts to implement combination HIV treatment worldwide, participating in the World Health Organization's (WHO) HIV treatment guidelines, spurring the establishment of the President's Emergency Plan for AIDS Relief (PEPFAR), and the Global Fund to Fight AIDS, Tuberculosis, and Malaria (GFATM). As a result of these efforts, for the first time in 2017 more than half the world's people living with HIV – 19.5 million of 37.5 million people living with HIV are receiving HIV treatment.
Over the past decade TAG has played a significant leadership roles in advocacy to meet domestic as well as global research, prevention and treatment priorities. As a result, there has been an exponential growth in research and policies aimed at maximizing the number of people living with or vulnerable to HIV infection who are engaged in care and accessing an expanded array of evidence-based services and interventions.
In 2012, we joined forces with Housing Works to create a New York State-wide coalition of community groups, public health officials, providers, and government officials, which led, in 2014, to Governor Andrew M. Cuomo's launch of the “Bending the Curve" initiative to end AIDS as an epidemic in New York State by the end of 2020. TAG helped lead the Governor's Ending the Epidemic Task Force, whose Blueprint to End AIDS in NYS was launched in April 2015.
Much of the progress we've achieved over the past 25 years is now in grave danger. We face a White House administration and Congress relentless in their threats to repeal the Affordable Care Act and to end Medicaid as a federal entitlement. The NIH Office of AIDS Research has been threatened for funding cuts by Congress. Now more than ever, TAG must remain heavily involved in broad coalition efforts to defend against these threats.
TAG is working to lead an unprecedented community mobilization effort to end HIV as an epidemic, both nationally and in high-HIV-burdened places. In addition to our goals of not just defending, but expanding federal research commitments and policies, we are collaborating with groups across the United States, notably in the Deep South, to catalyze local and state efforts to end their epidemics, using and adapting strategies, advocacy, and programs now being brought to scale in New York.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

T A G TREATMENT ACTION GROUP INC
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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T A G TREATMENT ACTION GROUP INC

Board of directors
as of 01/30/2024
SOURCE: Self-reported by organization
Board chair

Mr. Robert Lennon

Weil, Gotshal & Manges LLP

Term: 2021 -

Barbara Hughes

Project Renewal

Laura Morrison

NYU Silver School of Social Work

Kevin Goetz

ScreenEngine LLC

Joy Episalla

Artist

Rich Lynn

JP Morgan Chase

Robert Monteleone

Jim Aquino

Spotco NYC

Nicholas Debs

Debs Foundation

Jameel Jiwani

Investment Professional

Robert W. Lennon

Weil, Gotshal & Manges LLP

Ivy Kwan Arce

David Puentes

Michael Montero

Latino Commision on AIDS

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 1/30/2024

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Gay, Lesbian, Bisexual, or other sexual orientations in the LGBTQIA+ community
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability