News Release: Networks of People Living with HIV Petition CDC to be Involved in Determining Molecular HIV Surveillance Policy

Networks of People Living with HIV Petition CDC to be Involved in Determining Molecular HIV Surveillance Policy

Letter to CDC marks the one-year anniversary of the passage of a resolution by the Presidential Advisory Council on HIV/AIDS demanding collaboration with people living with HIV

(NEW YORK) – Today, 110 networks of people living with HIV, and HIV and human rights organizations sent a letter to the Centers for Disease Control and Prevention’s (CDC) National Center for HIV, Viral Hepatitis, STD, and TB Prevention to demand they meet and meaningfully collaborate with the US People Living with HIV before the next iteration of Molecular HIV Surveillance and Cluster Detection and Response (MHS/CDR) policies.

Today, October 17, 2023 is the one-year anniversary of the adoption of the Presidential Advisory Council on HIV/AIDS (PACHA) MHS/CDR Resolution whose recommendations highlighted a key principle that has guided the HIV movement for 40 years: the Meaningful Involvement of People living with HIV/AIDS (MIPA).

Our letter calls out the harm caused by long-standing policies that compromise the fundamental rights of communities most affected by HIV, especially LGBTQ+ and Black, Indigenous, and People of Color. The letter asserts that due to the lack of MIPA in promulgating policies around MHS/CDR the CDC has only deepened the mistrust of the health system by people living with HIV. To ameliorate this, the CDC must meet and truly listen to and engage with the concerns of people living with HIV. This would represent a meaningful step forward in the fulfillment of its commitment to ending the HIV epidemic.

“Listening sessions are not enough,” said Naina Khanna, co-executive director of Positive Women’s Network-USA and a member of the U.S. People Living with HIV Caucus. “We are demanding meaningful change to federal MHS/CDR policies to protect human rights for overpoliced communities in a time of rising dangers. Concerns about the collateral consequences of cluster detection and response including threats to health data privacy and security, lack of informed consent, legal and material consequences of HIV stigma and criminalization, and the misinvestment of resources that could be better used to address racial inequities in the HIV epidemic have been well documented in the US and globally. It’s long past time for the CDC to come to the table with people living with HIV to make the changes that have consistently been recommended by human rights experts.”

“Ending the HIV epidemic is not possible without meaningful and actively engaging leadership from people living with HIV,” said Martha Sichone-Cameron, co-chair of the US People Living with HIV Caucus. “Structural MIPA requires giving PLHIV networks a real voice in the planning, implementation and evaluation of programs that impact us and our communities. We need and deserve no less.”

“More and more, public health institutions seem to have given up on meaningful community partnerships with people living with HIV and focused on their own power and expertise,” asserts Dr. Andrew Spieldenner, Executive Director of MPact Global Action, “but we have seen the limits of this approach. It’s a shame that expedience has overwritten long-standing partnerships.”

“It is a well-established principle of public health practice that the communities most impacted must be centered,” said Dr. Kellan E. Baker, Executive Director and Chief Learning Officer of Whitman-Walker Institute. “This letter reminds public health authorities that they have an obligation to partner with the ready and willing networks of people living with HIV in the fight to end the HIV epidemic.”

“A year ago, our nation’s highest federal HIV policy advisory body urged the CDC to protect the human rights, bodily autonomy, and public health data privacy of PLHIV,” said Amir Sadeghi, Policy and Advocacy Manager, CHLP. “By mandating molecular HIV surveillance for all US jurisdictions without any buy-in or engagement from the leading national and local membership organizations formed by PLHIV, the CDC made a significant mistake that erodes trust in public health. Bodily autonomy, informed consent, and key protections to prohibit the use of any and all health data in criminal prosecutions against PLHIV are not at odds with public health–they are the anchors that make public health in alignment with ethics, trust, and human dignity.”

The letter has been endorsed by the following organizations:

Advocates for Youth

AIDS Action Baltimore

AIDS Alabama

AIDS Alabama South

AIDS Foundation Chicago

AIDS United

All Under One Roof LGBT Advocates of SE Idaho

Alyssa Rodriguez Center for Gender Justice

American Academy of HIV Medicine (AAHIVM)

APLA Health

Appalachian Learning Initiative

Arkansas RAPPS

AVAC

Best Practices Policy Project

Black & Pink National 

Blanc Slate Firm

Caracole, Inc. 

Cascade AIDS Project

Center for Health Law and Policy Innovation (CHLPI)

Central Illinois Friends 

CHANGE New Orleans

Chicago Women's AIDS Project

CHLP

Colorado Organizations and Individuals Responding to HIV/AIDS (CORA)

Community Solutions 

Contigo Fund

Desiree Alliance

Equality Federation

Family Service of Greater Baton Rouge

Five Horizons Health Services

Freedom Oklahoma 

Frontline Legal Services

Galaei 

Garden State Equality 

Georgia Equality

GMHC

GoodWorks: North AL Harm Reduction 

Health Not Prisons Collective

Health and Education Alternatives for Teens (H.E.A.T.), SUNY Downstate

HIV Modernization Movement-Indiana

HOPE Cape Town USA 

Horizon Ridge Wellness Clinic, Inc.

Idaho Coalition For HIV Health and Safety

International Community of Women Living with HIV

Just B U Inc.

Lambda Legal

Legacy Community Health

Legal Action Center

Lilmesican Productions, Inc. - A Social Enterprise

Louisiana AIDS Advocacy Network 

Louisiana Coalition on Criminalization and Health

Michael Reese Research and Education Foundation

Minority Health Consultants

Movimiento en Respuesta al VIH Inc.

NAESM, Inc.

National Alliance for HIV Education and Workforce Development (NAHEWD)

National Harm Reduction Coalition

National Working Positive Coalition 

New Haven Mayor's Task Force on AIDS

New Orleans Advocates for LGBTQ+ Elders (NOAGE)

NEW Pride Agenda

National HIV and Aging Advocacy Network (NHAAN)

NMAC

North Carolina AIDS Action Network (NCAAN)

Ohio Health Modernization Movement

OnePULSE Foundation, Inc. 

PA-HIV Justice Alliance

Positive People Network Inc.

Positive Women’s Network-New York chapter

Positive Women's Network-Pennsylvania chapter 

Positive Women’s Network-South Carolina chapter

Positive Women's Network-USA (national)

Positively U

Proactive Community Services

QLatinx

Rural Women's Health Project

SAGE 

San Francisco AIDS Foundation 

SEEDS of Healing, Inc.

Sero Project

SOMOS LOUD, Central FL Chapter

Southern AIDS Coalition

Strategies for High Impact

SWOP Behind Bars

T2Q Trans Quantum Questioning LLC 

Tennessee HIV Modernization Coalition 

The Black Cave

The Bros in Convo Initiative

The Counter Narrative Project (CNP)

The New Pride Agenda

The Reunion Project

The Sankofa HIV Initiative

The Well Project

Thrive Alabama

THRIVE SS, Inc.

Transgender Law Center 

Transgender Legal Defense & Education Fund

TransProgram

Treatment Action Group

Unique & Unified New Era Youth Movement

Unity Fellowship of Christ Church NYC 

US People Living with HIV Caucus 

Vivent Health

VOCAL-NY 

We the Positive / My Brother's Keeper

Western North Carolina AIDS Project

Whitman-Walker Institute

William Way LGBT Community Center

Woman to Woman We Are One

Women With A Vision