In March 2021, the Presidential Advisory Council on HIV/AIDS (PACHA) held a hearing requesting stakeholders provide public comment answering two questions:
  1. What are the most meaningful actions that can be taken to implement the HIV National Strategy Plan and improve implementation of the Ending the HIV Epidemic initiative at the national level and in your community to meet the goal of ending HIV?
  2. How can domestic HIV/AIDS programs better meet the needs of underserved communities and address the systemic barriers that communities face in order to achieve the goals of the President’s Executive Order Advancing Racial Equity and Support for Underserved Communities?
PWN provided a comment emphasizing the need for the HNSP to center (1) racial equity; (2) the meaningful involvement of people living with HIV (MIPA); and (3) an understanding that HIV is a symptom of multiple intersecting injustices and oppressions.

March 19, 20201: Positive Women’s Network-USA (PWN) appreciates the opportunity to submit a comment to the Presidential Advisory Council on HIV/AIDS (PACHA). PWN is the only national organization by and for women and people of transgender experience living with HIV. We have over 3,000 members throughout the U.S., chapters in six states, and a mobilization network in 20 states. PWN’s work is grounded in social justice and human rights, and we explicitly apply a racial justice and gender justice lens to address the multifarious barriers people living with HIV face in all aspects of our lives, including economic insecurity, barriers in access to health care, stigma, and more.  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.

In support of our goal to advance policy priorities from women living with HIV, we submitted a comment on the draft HIV National Strategic Plan (HNSP) with detailed concerns and recommendations and previously helped inform and craft the first and second National HIV/AIDS Strategy.  Our members and leadership have been members of PACHA, the CDC/HRSA Advisory Committee on HIV, Viral Hepatitis and STD Prevention and Treatment (CHAC), the Office of AIDS Research Advisory Council, and played key roles in the implementation of the End the Epidemic plans in local and state jurisdictions.

Collectively, we represent more than estimated 300,000 women and transgender people living with HIV. We appreciate the opportunity to provide both oral and written comments on the two questions PACHA has posed for reflection. In short, our comment can be distilled into three suggestions for the federal domestic response to HIV.  The response must center: (1) racial equity; (2) the meaningful involvement of people living with HIV (MIPA); and (3) an understanding that HIV is a symptom of multiple intersecting injustices and oppressions.

We will address MIPA and the intersection of injustices and oppressions in our response to the first question and racial equity in our response to the second question.  

  1. What are the most meaningful actions that can be taken to implement the HIV National Strategic Plan and improve implementation of the Ending the HIV Epidemic initiative at the national level and in your community to meet the goal of ending HIV?

Implementation of both HNSP and the Ending the Epidemics (EHE) initiative will require concrete actions to meaningfully involve people living with HIV and concrete metrics and indicators to evaluate the social and structural determinants of health, including racism.  It is critically important that these items are not just an afterthought to the biomedical interventions, which currently are centered in the goals and indicators of both plans. To accomplish this, measurable and meaningful commitments must be made to advance racial equity, MIPA, and the structural and social determinants of health.  Simply reciting that these will be considered is insufficient.

Action must be taken to create metrics and indicators to ensure that people living with HIV are involved in all areas of the national response.  It is critically important that people living with HIV are centered in the response in a way that is distinct from other community input.  HNSP reduces the concerns of people living with HIV (PLHIV) and the contexts in which we manage our HIV diagnosis largely to treatment adherence and a vaguely discussed notion of stigma.  To fully understand not just biomedical interventions, but also include social and structural determinants of health, the people affected by the epidemic must be actively engaged in measurable ways.  The federal response must work for us and it is quite literally impossible to end the epidemic without us.  PLHIV networks offer a unique engagement opportunity as organizations like PWN build power for PLHIV by speaking in a collective voice and organizing leadership for PLHIV.  They should be viewed as essential partners when crafting or changing HIV policy; prevention, care, and treatment guidelines; data collection and surveillance practices; the HIV research agenda; in the design of HIV service delivery; and in all aspects of monitoring and evaluation. MIPA requires resources, planning, and accountability and we demand that these be included in the plan with commensurate metrics, indicators, strategies, and funding.

Neither HNSP nor EHE mentions sexual and reproductive health for people living with HIV.  It is essential that any Implementation Plan ensures quality and non-stigmatizing sexual and reproductive sexual health for people living with HIV.  People of all genders and ages living with HIV experience the greatest stigma and discrimination from health care providers when seeking this kind of health care, making its absence from the Implementation Plan especially problematic.  For transgender people living with HIV, it is especially important that gender-affirming care is provided and that providers and clinicians are well-versed on our options and rights.

Finally, the implementation of both the HNSP and EHE plans must address the unethical use of molecular HIV surveillance, also known as MHS or cluster detection. PWN, and other PLHIV networks, demand that a moratorium on the use of MHS be put into place.  This data should not be collected until consistent state-level data privacy protections and security are put into place, people living with HIV give their informed consent prior to their data being collected, and criminalization concerns are addressed.  Without these safeguards, MHS puts already vulnerable people at elevated risk for prosecution and criminalization.

In sum, we ask that:

  • Funding for EHE jurisdictions be contingent on meeting clear, transparent MIPA metrics and indicators
  • PLHIV networks are actively engaged and consulted in creating the metrics and indicators for the Implementation Plan
  • The Implementation Plan create standing seats on PACHA, CHAC, and other federal advisory bodies for PLHIV network representation
  • ONAP be required to have leadership from communities most impacted by the epidemic, including Black gay and bisexual men, Black cisgender women, and transgender women of color
  • ONAP must have a process to regularly engage with PLHIV networks
  • The implementation plan requires providers to provide sexual and reproductive health care
  • The implementation plan requires providers to receive ongoing trauma-informed care, racial justice, and trans-sensitivity training
  • A moratorium on the use of molecular HIV surveillance (MHS)
  • MHS policies around state-level data privacy protections and security, informed consent requirements, and criminalization are created at the federal level with the input of PLHIV and their networks
  1. How can domestic HIV/AIDS programs better meet the needs of underserved communities and address the systemic barriers that communities face in order to achieve the goals of the President’s Executive Order Advancing Racial Equity and Support for Underserved Communities?

Racism, especially as it takes shape via anti-Black racism and xenophobia, underpins the devastating history of inequities in the HIV response, and circumscribes a legacy of criminalization and incarceration in the U.S.  These interlinked forms of violence disproportionately harm the priority populations identified in the HNSP.  High levels of health risks and poor health outcomes are inseparable from the race-driven criminalization and incarceration patterns that disproportionately harm Black and brown communities, as well as those who are transgender, gender non-conforming and non-binary, lesbian, gay and bisexual, immigrant, and sex worker communities, and, increasingly, cisgender women.  We ask that:

  • The Implementation Plan requires federal, state, and local partners to lead the efforts to stop using incarceration to deal with poverty, public health, and mental health conditions
  • Key structural interventions are implemented with appropriate tracking metrics including:
    • Safe and healthy housing for all experiencing homelessness and unstable housing
    • Food and nutrition services
    • Employment services optimized for communities disproportionately impacted by HIV and the racism-driven parallel of unequal access to quality education and employment
  • Invest in, hire, and collaborate with Black leadership in defining priorities for and responses to the domestic HIV epidemic
  • Adding sex workers and undocumented immigrants into the implementation plans as distinct constituent groups
  • Require ongoing racial justice and trans sensitivity training for all federal employees and all employees at federally-funded programs

By dismantling systems that perpetuate racism and oppression, by upholding human rights and rejecting discrimination, by ensuring that policy recommendations are driven by priorities set by the most impacted communities, and by treating health care as a human right, we could stop the HIV epidemic within our lifetime. We look forward to working with the PACHA to achieve this goal. 

Sincerely,

Venita Ray
She/Her
Co-Executive Director
[email protected]