2024 policy brief

To read the 2024 Policy Priorities in Espanol, click here. 

AIDSWatch, hosted by AIDS United in partnership with the U.S. People Living with HIV Caucus and the Center for Health Law and Policy Innovation, is the largest constituent-led HIV advocacy event in the country. For 31 years, those of us living with HIV and our allies have advocated on the state, local and national level for the policies that will end the HIV epidemic. As we look toward the upcoming election cycle, we continue this advocacy work, prioritizing policies related to quality of life, health care access, civil rights, aging with HIV, HIV decriminalization and federal funding. While there has been tremendous progress since that first AIDSWatch, we still need vigorous HIV advocacy.

The theme of this year’s event is We’re in This Together! – which will focus on how we all must work together, as people living with and vulnerable to HIV have multiple identities, which are interconnected, shared and currently under attack. The theme prioritizes the meaningful involvement of people living with HIV, as these principles ensure that the communities most affected by HIV are involved in decision-making, at every level of the response — and that includes policy.

We are pleased to share with you several policy priorities that can make a profound impact on the health and well being of people living with HIV. Thank you for your help in information sharing and educating. Through this policy brief, we include federal policy requests for different public health areas impacting people living with and vulnerable to HIV. These policy priorities can be viewed by clicking on the relevant collapsible links, which allow you to adjust the visibility of content by clicking that policy subject.

People living with HIV are the experts of their own lives. Sharing your story with legislators is one of the key components of public health advocacy — having the courage to share your truth to people in power is no small feat!

We look forward to continuing to work with you to ensure Congress provides us with the tools necessary to address the needs of people living with and vulnerable to HIV and to maintain connection with your constituents impacted by HIV.

Health and Social Issues

Access to health care remains a vital component of ensuring people living with and vulnerable to HIV can lead healthy, full lives.

    • Congress should ensure people have access to HIV treatment.
      • Antiretroviral therapy can help people living with HIV live longer, healthier lives. Additionally, when people have reliable access to antiretroviral therapy and a consistently undetectable viral load, the virus cannot be sexually transmitted – and new models of care are needed that provide comprehensive health care for older adults that integrate HIV care, chronic disease management, and geriatric assessment and care. Programs like the Ryan White HIV/AIDS Program ensure that people living with HIV can get the medical care and support they need, often resulting in higher rates of viral suppression among program clients. (For example, 89.7% of Ryan White clients were virally suppressed in 2021, compared to a national rate of 66%.) Congress should support the Ryan White program at $#### billion.
      • ** Pull-out box option to highlight someone from the community who benefits from Ryan White. **
    • Congress should ensure people have access to HIV prevention.
      • To end the HIV epidemic in the United States, we must make sure all people have access to effective forms of HIV prevention, including Preexposure Prophylaxis (PrEP). Current forms of PrEP can dramatically reduce the chance of getting HIV from sex or injection drug use. To support such access, Congress should increase access to PrEP and PEP, such as the PrEP Access and Coverage Act (H.R. 4392/S. 2188).
      • In addition, a lawsuit is currently threatening access to PrEP by trying to undermine a part of the Affordable Care Act that makes PrEP and other important preventive services free for many people with insurance. Congress needs to be aware of this lawsuit and must be prepared to act quickly if the Supreme Court undermines access to free preventive care.
    • Congress should fix the Medicaid coverage gap and protect Medicaid from cuts.
      • Medicaid is a critical tool in the fight against HIV, since it is the largest source of health insurance coverage for adults living with HIV in the United States. Yet ten states (AL, FL, GA, KS, MS, SC, TN, TX, WI, and WY) still have not adopted Medicaid expansion, leaving an estimated 2.1 million low-income adults in the “Medicaid gap”. These adults are not eligible for subsidized Marketplace coverage due to minimum income requirements and do not qualify for Medicaid under current state rules.
      • This problem has become even more urgent in the past year due to the end of special Medicaid rules that protected people from losing Medicaid during the COVID-19 emergency. The end of these rules, known as the “Medicaid unwinding,” has led to a lot of confusion and complications.
      • ** Pull-out box option to highlight someone from the community who falls within the Medicaid coverage gap. **
      • In addition, with a very conservative group of Republicans attempting to control the House of Representatives, Medicaid could be the target of threatened cuts. Oppose efforts to undercut Medicaid and support efforts to close the Medicaid coverage gap.
    • Congress should strengthen investments in HIV-specific public health programming.
    • Congress should address systemic barriers to care.
      • Many people face difficulty accessing health care. For example, despite providing critical health services to over 2 million people, the Indian Health Service has historically been subject to underfunding and uncertain funding, resulting in delayed and substandard care. Last year, the agency received its first advance appropriation, allowing for funding predictability despite Congress’ delay in passing a FY 2024 budget. Congress should ensure the Indian Health Service receives advance appropriations for FY 2025.
      • Additionally, many people living in the United States are routinely barred from or are forced to delay access to health care coverage (including Medicaid, Medicare, and private health insurance sold on the Marketplace) due to their immigration status. For example, only some immigrants are eligible for Medicaid, with many still required to wait five years before receiving coverage. This keeps necessary medical care, including key preventive care, out of reach for millions of individuals and families.
      • As of 2021, Black/African American communities accounted for 14% of the US population but 40% of new HIV diagnoses due to barriers to accessing competent health care and lower service utilization. Congress should maintain the Minority AIDS Initiative and supplemental Ending the Epidemic funding to support grassroots Black-led community-based organizations, expand access to high quality HIV services, and reduce disparities in health outcomes among racial and ethnic minorities.
      • Support the bipartisan Help Ensure Lower Patient (HELP) Copays Act (H.R. 830, S.1375) to protect patients from harmful insurance and pharmacy benefit manager practices that raise patient out-of-pocket drug costs.
    • Congress should invest in programs that address health-related social needs.
      • Programs that address health-related social needs, like the Housing Opportunities for Persons with AIDS (HOPWA), are vital to ensuring that people living with HIV have the support they need to live healthy lives. People living with HIV who face housing instability or homelessness are more likely to delay life-saving care and treatment and encounter barriers to reaching viral suppression. Congress should support housing as an essential aspect of healthcare by funding HOPWA at $600 million.
      • Reauthorize the Older Americans Act (H.R. 4120/S. 1979) and include language that designates older adults living with HIV and LGBTQ+ older people as populations of “greatest social need.”
    • Congress should support health care financing structures that are flexible enough to integrate innovative, effective programming.
      • Food is Medicine services, such as medically tailored meals, are cost-effective interventions that can prevent and treat diet-related chronic conditions, improve household food security, and address health disparities. Congress should pass legislation, such as the Medically Tailored Home-Delivered Meals Demonstration Act (S. 2133) which establishes and evaluates a four-year Medicare program to provide medically tailored home-delivered meals to seniors living with diet-impacted conditions.
    • Congress must dedicate resources to address the social determinants of equity, including but not limited to racism, transphobia, homophobia, xenophobia and ableism.
      • Investments in Ending the HIV Epidemic and other initiatives (such as the Minority HIV/AIDS Fund) should be community-based, community-led, and fully funded. Congress’ investment of funds should reflect a commitment to the Meaningful Involvement of People Living with HIV (MIPA) in leadership, advisory, and decision-making roles.
    • Congress must put people and their health above political and religious ideology.
    • People across the country should be able to access the health care they need, regardless of what state they live in. State attacks on access to gender-affirming and reproductive health care are worsening disparities and harming health. Congress must oppose federal policies that restrict gender-affirming care and care of any kind.
    • We urge Congress to provide $50 million to the Health Resources and Services Administration in fiscal year 2025 to implement the Bio-Preparedness Workforce Pilot Program – which will offer loan repayment to health care professionals providing infectious diseases and HIV services in health professional shortage areas, medically underserved communities or Ryan White-funded clinics and other designated federal health facilities.

The Political Landscape

Access to health care remains vital to ensuring people living with and vulnerable to HIV can lead healthy, full lives.

    • A narrow margin of control by Republicans in the U.S. House of Representatives has meant that many progressive policies proposed by the Biden-Harris Administration and supported by the Senate Democratic majority have stalled.
    • Political infighting and disruption in the election of a House speaker greatly impacted the House’s ability to pass a budget in a timely fashion.
      • Republican appropriators in the House proposed eliminating funding for the Ending the HIV Epidemic initiative, as well as the HOPWA program, the Minority AIDS Initiative, and severe cuts in other programs.
      • The political composition of the House impacts our ability to preserve and expand critical funding for HIV-related programs.
      • All 435 House seats are up for re-election in 2024.
    • The slim Democratic majority in the Senate has provided a critical firewall for damaging policies proposed in the House.
      • That majority has also made it possible for the Biden Administration’s historically diverse executive and judicial nominations to become a reality.
      • 33 senate seats are up for re-election in 2024.
    • The presidential election also will take place in 2024 — giving voters the opportunity to choose between the presumptive Democratic nominee — President Biden and the presumptive Republican nominee — Donald Trump. The stakes could not be higher — despite that also being the case in 2016 and 2020 — as we confront even more authoritarian pressures on our democracy.
      • In addition to signing and vetoing laws, the President has the authority to nominate government officials and federal judges, including the Supreme Court, and enact protections or restrictions on a wide swath of civil rights, including access to health care.
        • A second Trump administration would be detrimental to many of our constitutional rights.
    • A consistent increase in state legislative attacks on LGBTQ rights, reproductive freedom, voting rights, access to health care, and other civil rights means that voter turnout and voter engagement in state and local elections are critically important.
      • State legislatures pass the laws that most affect Americans’ day-to-day lives.
      • Currently, the Republican party controls both legislative chambers and the governor’s seat in 22 states, the Democratic party holds control in 17 states, and there is divided control in 11 states.
    • 44 states, Washington, D.C., and Puerto Rico will hold elections to determine control of state legislatures.
    • 11 states have gubernatorial elections.
    • 10 state Attorneys General are on the ballot. A state Attorney General (AG) determines which laws to enforce and how strictly to enforce them. This office is particularly important when it comes to criminalization of HIV, bans on gender affirming care, criminalization of pregnant people, and criminalization of substance users and/or harm reduction tools.
    • 33 states are holding state supreme court elections. State supreme courts can determine the legality of a state abortion ban, or the legitimacy of a gerrymandered voting district map. State supreme courts can also uphold efforts by a state legislature to undermine the authority of a governor of a different party — often thwarting the will of the voters.
    • Critical policy issues including abortion, minimum wage, and voting rights will also appear as ballot initiatives in several states. Ballot initiatives are a mechanism for direct democracy, meaning that individuals working together can bypass a state’s legislature.

Civil rights

Congress must address ongoing and persistent unfair and discriminatory practices that perpetuate structural and institutional racism and other inequities.

    • The right to vote is a fundamental human right that has been threatened by voter suppression efforts in recent years. In 2021, 18 states passed 34 laws restricting access to voting, and the trend to restrict access to voting continues on. This has significant impacts on various categories, including health and social issues, political landscape, racial justice, civil rights, syndemics, empowerment, engagement, and education.
    • Passing the John R. Lewis Voting Rights Advancement Act (H.R. 14) and the Freedom to Vote Act (H.R. 11/S.1) can help change this. Making voting more accessible for all makes people from all communities, including marginalized communities, more visible to elected officials. By asking better of our elected officials, we can ensure that voting becomes a fundamental human right.
      • The John R. Lewis Voting Rights Advancement Act (H.R. 14) would strengthen voting rights by expanding and strengthening the government’s ability to respond to voting discrimination particularly toward communities of color.
      • The Freedom to Vote Act (H.R. 11/S.1) includes measures to reform voter registration, integrity, and voting access. The language of the final bill must preempt any current state legislation that threatens voting rights.
    • HIV criminalization laws contribute to the health implications of people living with HIV as a deterrent to testing and seeking care. Molecular HIV surveillance collects personal genetic health care information for public health surveillance and intervention purposes by state, local and national public health officials. Data from several states with HIV criminalization laws provide evidence of racial and gender bias in their prosecutorial application, disproportionately penalizing marginalized communities like Black and Latinx gay and bisexual men, cisgender and transgender women, and people who engage in sex work, a population that historically encounters health inequities. People living with and vulnerable to HIV must be able to interact with the health care system without fear of having their lives or serostatus weaponized against them in the future. Modernization or repeal of HIV criminalization laws requires states to act. However, federal leadership on the HIV response has a critical and important role to play in creating an affirming legal, social and political climate for people living with and vulnerable to HIV to engage in effective health care and have all their human rights protected.
    • We ask that Congress:
      • Pass the Repeal Existing Policies that Encourages and Allow Legal (REPEAL) HIV Discrimination Act. and enact legislation encouraging and supporting states to repeal HIV criminalization laws.
    • LGBTQI+ communities, including those living with HIV, face significant challenges in accessing critical services that allow them to remain in care, such as health care, housing, and employment. This is particularly important given the unprecedented volume of state-level bills specifically targeting and attacking transgender and LGBTQI+ communities, with over 600 anti-LGBTQI+ bills being filed during state-level legislative sessions in 2023 alone. LGBTQI+ youth and communities of color are disproportionately affected, and face multiple intersecting forms of stigma, discrimination, and violence.
    • We ask that Congress:
      • Support legislation to protect non-discrimination protections for people living with and vulnerable to HIV and/or LGBTQ+ people, such as the Equality Act (H.R. 15/S.5), as equal and equitable access to services are critical to ending the HIV epidemic.
    • Cisgender and transgender women account for about a quarter of the domestic HIV epidemic. The single largest percentage increase in the number of people living with HIV from 2014 through 2018 by gender was among transgender women. Gender disparities are also racialized and geographic: Black, Latinx, and other women of color represent most women living with HIV in the United States and a majority of new HIV acquisitions. To ensure adequate gender justice, Congress must also pass legislation to fund programs led by women and transgender people to address housing, the HIV epidemic and other healthcare needs through a gender equity lens. Also, Congress should pass legislation to require grantees to include intimate partner violence screenings in health care supportive service settings. Additionally, Congress must work to secure Title X family planning program grants funding to maintain affordable access to birth control, screenings for cancer and sexually transmitted infections, and pregnancy testing. Finally, according to the Human Rights Campaign, in 2022 and 2023 at least 90 transgender people were fatally shot or killed by other violent means. In order to comprehensively achieve gender justice, we have to fight against these hate crimes and urge Congress to work with impacted communities to develop legislation that addresses the growing trend of violence against our transgender communities.
    • We ask that Congress:
      • Pass the Equal Access to Abortion Coverage in Health Insurance (EACH) Act (H.R.561/S.1031), which would require federal health insurance plans, such as Medicaid, to provide coverage for abortion services.
      • Pass the Paycheck Fairness Act (H.R. 17/S. 728) to help eliminate the gender wage gap.
      • Congress should pass the LGBTQ Data Inclusion Act to ensure lawmakers and federal agencies have the comprehensive data they need to address LGBTQ+ issues.
      • Support the Chyna Gibson Stop the Transgender Murder Epidemic Act (H.R.4960), to establish a Commission to address the pervasive, and targeted epidemic of fatal violence, economic discrimination, and other factors disproportionately impacting members of the transgender community, and to make recommendations for appropriate Congressional solutions.
    • Culturally relevant, non-stigmatizing, and comprehensive sexual and reproductive health care is essential to the quality of life of people living with HIV. Cisgender women living with HIV are frequently not offered or referred for other sexual and reproductive health services when receiving HIV care, despite being at elevated risk for gynecological complications. Since the overturn of Roe vs. Wade in 2022, reproductive rights have been increasingly attacked at both the state and federal level. The right to bodily autonomy is a fundamental right. Protecting sexual wellness and reproductive care is critical to ending the HIV epidemic.
    • We ask that Congress:
      • Support legislation that expands reproductive rights, access and affirming comprehensive sexual health education, such as the Real Education and Access for Healthy Youth Act (REAHYA) (H.R.3583/S.1697).
      • Pass the HIV Epidemic Loan-Repayment Program (HELP) Act, which will help build the next generation of HIV care and prevention experts and address clinical HIV workforce shortages.
      • Congress should pass the Medicare For All Act (H.R. 3421) to establish a national health insurance program.
    • Sex workers have long been among the communities most impacted by HIV. A trans woman who has ever done sex work in their lifetimes is over 25 times more likely to be living with HIV than the general population. Sex workers are also at increased risk for violence from community and from law enforcement, and bear the brunt of HIV-related prosecutions, convictions and sentence enhancements in many U.S. states and territories, especially those who are Black, Latinx, Indigenous, and Asian. HIV services and government programs may also stigmatize and structurally exclude sex workers.
    • To end the HIV epidemic, competent and non-stigmatizing HIV services must be provided to sex workers, and sex workers must be able to benefit from other publicly funded programs without fear of judgment, discrimination, violence, criminalization, exclusion or confidentiality violations. Additionally, sex workers living with and vulnerable to HIV need to be empowered and engaged in the HIV response and have a voice in the policies and programs that affect them and must have access to accurate and reliable information and resources that can help them make informed decisions about their own health and well-being.
    • We ask that Congress:
      • Investigate the harms done by the Fight Online Sex Trafficking Act (FOSTA) and the Stop Enabling Sex Traffickers Act (SESTA) by reintroducing the SAFE SEX Workers Study Act.
      • Oppose legislation that threatens internet privacy and further criminalizes and stigmatizes sex workers, including the Eliminating Abusive and Rampant Neglect of Interactive Technologies EARN IT Act.
    • Immigrants face significant challenges in accessing health services due to legal and regulatory restrictions. Even under the Affordable Care Act, millions of immigrants without legal status remain unable to access health care and other services that support access to health care. Immigrants of color, especially those from Latin America, Asia, Africa, and the Caribbean, are disproportionately affected by HIV and face multiple intersecting forms of stigma, discrimination, and violence as safety concerns and language injustice persist. Regulatory barriers have been erected that prevent immigrants living with HIV from accessing systems of care they need and have a right to, including health care. These barriers have fueled medical mistrust and service avoidance among immigrants living in the U.S.
    • We ask that Congress:
      • Pass the Health Equity and Access under Law (HEAL) for Immigrant Families Act (H.R. 5008/S.2646), which removes cruel and unnecessary barriers to health care for immigrants of all statuses.
      • Pass U.S. Citizenship Act (H.R.3194), which would expand paths to citizenship for some immigrants and modernize the immigration system and processing.

Syndemics

  • Syndemics are epidemics that interact with each other and by that interaction increase their adverse effects on the health of communities that face systemic, structural, and other inequities.
  • The syndemic of HIV, viral hepatitis, sexually transmitted infections (STIs), drug overdose, tuberculosis, COVID-19, mpox, and other health conditions has a compounding effect on each disease state.
  • The driving force behind a syndemics approach is the understanding that we cannot end the HIV epidemic without also addressing other epidemics that also impact people living with and at risk of contracting HIV.
  • For instance, we know that:
    • Roughly 1 in 10 new HIV transmissions in the United States are the result of injection drug use.
    • People living with HIV are significantly more likely to have a substance use disorder, with studies estimating that PLWH experience SUDs at 3 times the rate of the general population, with even greater disparities related to methamphetamine and cocaine use.
    • 21% of people living with HIV in the United States are also living with Hepatitis C, with that number climbing to as high as 80% for people who inject drugs. For Hepatitis B, rates of dual diagnosis with HIV are at 10%.
    • Sexually Transmitted Infections like Chlamydia, Syphilis, Herpes, and Gonorrhea are all to varying degrees more likely to be acquired by people living with HIV. They also increase the likelihood of someone getting or transmitting HIV.
  • So, it stands to reason that ending the HIV epidemic & improving quality of life for people living with HIV is intimately tied to providing care for people who use drugs, and people living with or at risk of contracting Hepatitis and STIs. We cannot fully succeed in one without succeeding in the others.
  • The syndemics approach we take focuses on the intersection of HIV with viral hepatitis, sexually transmitted infections, drug overdose, tuberculosis, COVID-19 (including Long COVID), mpox, and other health conditions.
    • A syndemics approach is not constrained to a preset list of conditions. Rather, it expands and adapts to meet the needs of impacted communities. For instance, prior to 2023, mpox would not have been included in a syndemics approach because it had yet to impact communities that are also disproportionately impacted by HIV in the United States. However, once mpox became endemic in the U.S. and the CDC learned that 61% of people diagnosed with mpox were either living with HIV or had been diagnosed with an STI in the last year, it became a natural fit to a syndemics approach because of the ways it overlapped with other health issues.
  • At the heart of a syndemics approach is an emphasis on harm reduction and comprehensive, person-centered care that recognizes that our health and well-being cannot be reduced to any one condition. It acknowledges that the broader societal factors and individual behaviors that impact our likelihood of being affected by one adverse health condition, also extend to many others.
    • The emphasis on improving the overall quality of life for people living with HIV that has long been at the heart of HIV community advocacy and which was highlighted through new Quality of Life Indicators in the National HIV/AIDS Strategy Federal Implementation Plan, is very much in line with a syndemic approach. Focusing on the broader drivers of health inequity in the U.S. and placing a priority on treating people as opposed to individual conditions, increases the likelihood of someone having their most pressing health concerns met.
  • Continue to advocate for the things that you and the broader HIV community already advocate for, and explain how these concerns are all related. Help members of Congress understand the ways in which our different policy priorities are connected in our communities and our lives.
  • Not all Congressional offices are going to be familiar with or naturally interested in the issues that you think are the most important. But, if you can find an issue area that is a priority for the member of Congress you are meeting with, you can potentially get them to take an interest in your priority issues by connecting them with issues they are already committed to.
  • Reintroduce and pass the Comprehensive Addiction Resources Emergency (CARE) Act, which establishes programs to address areas affected by opioid/stimulant substance use, including grants for treatment, recovery, and harm reduction services.
  • Endorse efforts to expand health care access and coverage for disenfranchised populations, such as the Reentry Act (H.R.2400/S.1165) and the Due Process Continuity of Care Act (H.R.3074/S.971).
  • Oppose the Halt All Lethal Trafficking of Fentanyl (HALT) Act (H.R. 467), which would revive failed, punitive drug policies by issuing new mandatory minimums for all fentanyl-related substances while also hampering our ability to do research.

Empowerment, Engagement, and Education

We need to hold all our elected officials accountable throughout the year and make sure our voices are heard. We encourage all advocates to:

    • For decades, people living with and at risk of HIV have effectively advocated for programs and laws that address our needs (e.g., the Housing Opportunities for Persons with AIDS (HOPWA), the Affordable Care Act, etc.). We cannot become complacent and assume Congress understands the importance of these programs and laws. Be vocal, even when there isn’t an urgent threat to their funding or existence.
    • Inconsistent funding undercuts the gains made by public health programs and initiatives. Stable, robust investments that keep up with inflation and respond to new needs should be the norm.
    • Elected officials represent us. They need to hear our stories (the good and the bad) and to understand how the decisions they make in Congress impact the everyday lives of our communities.
    • Make sure AIDSWatch isn’t the last time your member of Congress hears from you. Follow-up with calls and emails, visit their home office, be a consistent voice so they know you are tracking their votes and leadership.
    • Vote! Your power is in both your voice and your ballot. Learn about the local, state, and federal elections happening where you live, and which candidates or ballot questions align with your values. Bring friends and family with you when you go to vote. Connect with civic education groups and get-out-the-vote drives.

You can practice continued advocacy in the following ways:

    • Social Media (Facebook, Instagram, Twitter: post or repost and call our decision makers to action or provide education/awareness to the community)
    • Petitions (create a call to action signage to change a piece of Legislation)
    • Action Alerts (create a call to action email, literature, or letter to change a piece of Legislation)
    • Meetings with Decision-Makers
    • Grassroots Organizing (Phone banking, Blockwalking, canvass in your community)
    • Partnerships and Alliances (Develop and create neighbor, city or state Coalitions between advocates and or organizations)
    • Volunteerism (serve and help with local, state and federal organizations)
    • Voting and encouraging others to vote

Advocacy can always be framed around your own experiences, whether from your lived experience or those around you. Storytelling allows a picture to be viewed in a short period of time, and is designed to make your decision makers take action.

Our community is full of experts. Continue connecting with the friends and colleagues you meet at AIDSWatch and share your expertise (e.g., lived experience, expertise in a specific policy area, academic training, and more) with others!


Please get in touch with the AIDSWatch team at aidswatch@aidsunited.org with questions about these policy recommendations or for further support on HIV/AIDS policy.

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