Positive Women’s Network – USA sent the following letter to the Biden-Harris administration.

Positive Women’s Network-USA (PWN) is the only national organization truly led by and for women living with HIV (WLHIV), inclusive of women of transgender experience. Our mission is to prepare and involve all women living with HIV, in all our diversity, in all levels of policy and decision-making. We utilize four primary strategies to achieve our goals: i) building leadership among women living with HIV, with a focus on those communities most impacted by the epidemic; ii) issue-based and electoral organizing; ; iii) strategic communications that center the perspectives of those who will be impacted by decisions; and iv) policy analysis and policy advocacy.

Founded in 2008 by 28 diverse women living with HIV, PWN has grown to encompass a national membership and base, with statewide chapters in Alabama, Colorado, Louisiana, Pennsylvania, South Carolina, Texas and a mobilizable base in nearly 20 states. Our work focuses on building leadership and power among the communities most impacted by the HIV epidemic — especially transgender women, low-income women living with HIV, and Black and Latinx communities — to ensure policies are grounded in human rights and social justice. 

PWN  members and staff have served on key advisory and decision-making bodies including the Presidential Advisory Council on HIV/AIDS (PACHA), the CDC/HRSA Advisory Committee (CHAC), the Office of AIDS Research Advisory Council (OARAC), and numerous statewide and regional planning bodies. We succeeded in bringing a gender lens to President Obama’s National HIV/AIDS Strategy; helped create and support a Federal Interagency Task Force on Violence Against Women, HIV, and Gender-Related Health Disparities, and helped save the Affordable Care Act. We hope to see the Biden-Harris Administration bring back and improve upon these important advisory committees as well as prioritizing the distinct needs of women and transgender people living with HIV in national HIV and COVID-19 policy.

 Our successes have included modernizing HIV criminalization laws in Colorado (2016) and California (2018), successfully pushing back on a Medicaid work requirements proposal in Colorado (2019), supporting advocacy on HIV housing in Atlanta, and defeating new problematic HIV criminalization legislation in Virginia (2020). We have also led the discussion and work on addressing the intersection of HIV and COVID-19 criminalization and surveillance, including the enactment of a COVID-19 privacy protection law in New York (2020). Thus, our work continues to result in policies and practices that are increasingly responsive to the needs of people living with HIV throughout the nation. 

Since the emergence of COVID-19 as a global pandemic of public health significance, PWN and our allies have marshaled our resources and expertise towards addressing COVID-19. This has included bringing to bear our extensive expertise on surveillance, health data privacy and data sharing, contact tracing, healthcare inequities, and human rights protections for vulnerable communities. Addressing these issues as part of the COVID-19 response is crucial to combating mistrust in communities that have historically been harmed by medical research and the healthcare industry – including but not limited to Black people, immigrants, communities of color, and LGBTQ communities. We welcome the opportunity to collaborate with the Biden-Harris administration on these and other issues.

Policy priorities to address the domestic HIV epidemic among women

It is critical that the Biden-Harris administration work with impacted communities to swiftly enact new policies and work with Congress to pass new laws that meet the needs of women, including women of trans experience, living with HIV. Women account for about a quarter of the domestic HIV epidemic. In 2018 alone, an estimated 7,189 women and 554 women of trans experience were newly diagnosed with HIV in the United States. The largest percentage increase in the number of persons living with HIV from 2014 through 2018 was among women of transgender experience. Any program to address the HIV epidemic must especially address the needs of Black, Latinx, and other women of color, as they represent a majority of women living with HIV in the United States and a majority of new HIV acquisitions. These women tend to be concentrated in the South, which in 2018 had more reported HIV acquisitions (3,988) among adult women and adolescents than any other region. 

 Our issue priorities address the need for women living with HIV, especially those in rural areas, to receive comprehensive access to health care services as well as the other resources necessary to live long and dignified lives. Women living with HIV are more likely to receive some care, but less likely to be retained in care as compared to the statistical average person living with HIV. The rates of death among people living with HIV reflect this disparity, as women, transwomen, Black people, people of more than one race, and people in the South saw smaller gains in their rates of deaths HIV from 2010 until 2018 than other people living with HIV,and women are more likely to die of HIV related complications than men. Without a broad and inclusive vision of HIV policy, these disparities will continue to exist.  

 The literature confirms what the data shows: Significant structural barriers and intersecting oppressions continue to lead to worse outcomes for women, Black communities, people of color, and people in the South living with HIV. For example, higher percentages of ciswomen and transgender women who are clients of the Ryan White HIV/AIDS Program are living below the federal poverty line than men. There must be prioritization for employing women with HIV and meaningfully involving them in all aspects of policymaking. Mental health and trauma must also be prioritized in the administration’s HIV response. Fifty-five percent of women living with HIV report experiences of intimate partner violence, and the associated trauma can also lead to poor treatment outcomes and higher transmission risks.

 These are just two examples of many barriers faced by women and women of trans experience living with HIV. Until steps are taken to remove or reduce these barriers and oppressions, women, especially transgender, Black, Indigenous, and women of color, will continue to be disproportionately affected by the HIV epidemic.

With this background, PWN works to change policies and to create, support and advocate for programs that meet the needs of women living with HIV and our communities. Grounded in racial, gender, and economic justice,p, we focus on six priority issues that impact people  living with HIV:

  1. Advancing universal, high-quality health care;
  2. Securing sexual and reproductive health, rights, and justice;
  3. Economic justice and financial security for low-income communities;
  4. Ending HIV-related criminalization;
  5. Ending violence against women living with HIV and promoting trauma-informed healthcare and service delivery;
  6. Trans rights, safety, and justice.

Below we briefly outline some of our hopes for the Biden-Harris administration.

  • People living with HIV must be considered a priority group for receipt of the COVID-19 vaccine. Analyses from multiple studies have found evidence of increased risk among people living with HIV for hospitalization and mortality – possibly up to a doubling of risk for hospitalization and death for people living with HIV compared with HIV-negative counterparts.
  • Protect and expand the Affordable Care Act. The Affordable Care Act improved health care access for hundreds of thousands of people living with HIV. We are committed to working with the incoming administration, Congress, and state policymakers to protect and expand the Affordable Care Act. 
  • A national HIV strategy must:
    • Proactively address racial and gender inequities in the domestic epidemic and response. Racism is a public health crisis. Until systemic racism, specifically anti-Black racism, is corrected, racial and gender disparities in health outcomes related to HIV (and to COVID-19 and any future pandemics) will persist. In the U.S., women living with HIV have worse health outcomes and higher mortality rates compared with their male counterparts. Yet, as we approach four decades of an HIV pandemic, the vast majority of HIV testing, prevention, support, and care models remain based on men’s decisions, bodies, lives, and needs. Women living with HIV are disproportionately low-income and of African descent. Transgender women of color are especially vulnerable to acquiring HIV, to discrimination in healthcare and service delivery settings, and to poor health outcomes if diagnosed with HIV.
    • Prioritize quality of life and quality of care for the 1.2 million Americans already living with HIV, not only HIV prevention.  People living with HIV are more than our viral loads. Disparities and inequities faced by people living with HIV must be considered, not just whether or not we are virally suppressed. Viral suppression is not, and never will be, an acceptable proxy for our well-being. We demand a continuum of care that values our emotional, mental, psychological, spiritual, and physical wellness, as we age with HIV regardless of whether we are virally suppressed or not.
    • Be developed, led, and monitored by communities most impacted by the domestic HIV epidemic, with robust engagement from networks of people living with HIV. The Trump administration’s Ending the HIV Epidemic (EtE) plan did not adequately involve people living with HIV or people from communities most impacted by the HIV epidemic and lacked any formal requirement that local planning bodies reflect and include groups most impacted by HIV in their communities. It also failed to establish clear principles and procedures to ensure transparency and meaningful involvement from people living with HIV. Any EtE plan will be unsuccessful as long as those directly impacted–people living with HIV–are not informing the solutions and leading implementation. 
    • Address social and structural barriers to the HIV response. The vast majority of people living with HIV in the U.S. suffer from multiple oppressions and traumas stemming from racism, poverty, sexism, transphobia, homophobia, xenophobia, and stigmas related to mental illness and substance use, in addition to stigma and health challenges arising from our HIV diagnoses. These barriers exist both inside and outside the HIV service delivery system and must be addressed across federally funded programs serving people living with HIV, not only in HIV-specific programs. For example, it is essential that the Biden-Harris administration fully repeal the Trump administration’s final rule reinterpreting §1557 of the Affordable Care Act removing nondiscrimination protections in health care for people of trans experience. Additionally, the Biden-Harris administration must commit to decriminalizing sex work by repealing harmful punitive laws that target sex works and must assure that competent and non-stigmatizing HIV services are provided to sex workers. Doing so ensures sex workers may participate in HIV services without fear of judgment, criminalization, or confidentiality violations.
  • Communities most impacted by HIV must lead the domestic response. The Biden-Harris administration should commit to placing community leaders, reflective of constituencies most impacted by the epidemic, who are openly living with HIV in key decision making and advisory roles relevant to the HIV epidemic, such as in the Office of National AIDS Policy, the Presidential Advisory Council on HIV/AIDS, and the CDC/HRSA Advisory Committee. 
  • Declare an immediate moratorium on molecular HIV surveillance (MHS) until patient consent, data privacy, security, and criminalization concerns are addressed. MHS is the process of tracing networks of HIV transmission by using HIV genomic sequence data that is obtained when a person living with HIV gets a resistance test. People living with HIV have not consented to have their data used or shared in this way and confidentiality breaches related to this data have already been documented. In addition, more than 30 states have laws criminalizing HIV transmission, exposure, or nondisclosure. Thus, MHS could, even unintentionally, place people with HIV at risk for prosecution. This is of particular concern for communities that already face high levels of surveillance and criminalization, independently of HIV status, including Black people, immigrant communities, other communities of color, people who trade sex, people who use drugs, and people who are unstably housed.
  • Robustly fund federal programs serving women living with HIV. Women with HIV overwhelmingly live in poverty with 89.7% of PWN members living at or below 138% of the Federal Poverty Level (FPL). As a result, women with HIV tend to be food insecure, less mobile than the general population, and depend heavily on the social safety net. Protection and expansion of programs such as Medicaid, the Supplemental Nutrition Assistance Program (SNAP), and others is crucial for survival. In the time of COVID-19, as services are closing temporarily and people living with HIV and those who are aging are isolating anyway due to elevated risk, people with HIV face increasing challenges accessing resources necessary for their well-being.

We appreciate the opportunity to meet with you to discuss how the Biden-Harris administration can best meet the needs of women living with HIV. 

Sincerely,

Naina Khanna
Co-Executive Director
Positive Women’s Network-USA 

Venita Ray
Co-Executive Director
Positive Women’s Network-USA

PWN Resources:

  • 2017-2018 Impact Report – The Report describes PWN’s achievements from 2017 until 2018 and goals for the next 5 years. Specifically, it discusses what PWN accomplished in the following areas: leadership development; achieving racial, gender, and economic justice; organizing and mobilizing; electoral organizing; policy and advocacy on the state and federal level; and reclaiming the narrative of who women living with HIV are. 
  • Positive Women’s Network-USA Policy Agenda – This outlines PWN’s vision, the policies we support and oppose to help us achieve this vision and the current state of play as to each of our policy priorities. 
  • Ending Criminalization
    • HIV Criminalization 
      • Factsheet: Criminalization as Violence Against Women Living with HIV – This serves to educate stakeholders regarding how the intersection of HIV criminalization and law enforcement practices, police violence, harassment and brutality, and incarceration and reentry system serve to enact violence against women living with HIV. It also provides specific recommendations for policymakers to reduce and eventually eliminate these violent practices.  
      • HIV Criminalization: Know Your Rights – This guide serves as a resource to people living with HIV by providing them with the knowledge and information to protect themselves from prosecution and/or criminalization under discriminatory HIV-specific laws. It includes specific information for communities most likely to be impacted by HIV criminalization, as well as general information so a person living with HIV can understand their rights if arrest, prosecution and/or incarceration should occur.
    • COVID-19 Criminalization
      • Criminalization of COVID-19 Hill Briefing hosted by Rep. Ayanna Pressley and the LGBT Caucus – In this briefing, experts framed the ways in which using a criminal legal approach to address a pandemic undermines public health. Panelists discuss the state of COVID-19 criminalization, lessons learned from the HIV/AIDS movement, and discuss the disproportionate effects COVID-19 criminalization has on Black, Indigenous, and people of color communities (BIPOC), LGBTQ people, and immigrants.
    • Molecular HIV Surveillance 
      • Ending the Epidemic Requires Consent and Community Leadership – This factsheet outlines advocates’ concerns with Ending the HIV Epidemic: A Plan for America and provides specific recommendations from the community to remedy the concerns. 
      • AIDS United Public Policy Council Consensus Statement on Molecular HIV Surveillance 
      • Edwin J. Bernard et al., We Are People, Not Clusters!, 20 Am. J. of Bioethics, participatory and community-located, intersectional, racial and viral justice approaches to respond to HIV.550. – An editorial authored by people living with HIV which critiques the use of MHS in the United States without the consent of people living with HIV, without protections against the use of cluster data to criminalize, and to further and increase targeting and stigmatization of communities with a higher number of people living with HIV, many of which are already oppressed and marginalized. It instead calls for the cessation of MHS use in the United States and instead pursuing HIV data justice by meaningfully involving people living with HIV, and taking an intersectional and racial and viral justice approach.
      • Cecilia Chung et al., Consent and Criminalisation Concerns Over Phylogenetic Analysis of Surveillance Data, 6 Lancet e420 (2019),  – This response to a study of HIV transmission networks among transgender women in Los Angeles County, California highlights the risks of utilizing HIV surveillance data, especially without the consent of the women whose data was used. 
    • Health Not Prisons Collective – This describes the Collective as well as its goals, strategies members, and the need for its creation.
  • Trauma-Informed Care
  • Trans Rights, Safety and Justice 
  • Economic Justice