On April 7, a radically conservative, Trump-appointed judge in Texas ruled to halt the Federal Drug Administration’s (FDA) approval of a safe, effective and commonly used medication mifepristone (“mife”). Mife is used along with another drug (misoprostol, “miso”) to terminate pregnancies. On April 21, the Supreme Court of the United States granted a stay to maintain nationwide access as the case proceeds through the Fifth Circuit Court of Appeals and the Supreme Court. This Supreme Court decision means that mife remains on the market for the foreseeable future. Science and commonsense prevailed. But, like the recent Braidwood decision, we should never be in a position where judges are deciding whether people can get safe, effective medicines. To read PWN-USA’s statement on the recent Supreme Court stay, click here. 

First, a little background. Molecular HIV surveillance broadly refers to the practices state and local health departments and the Center for Disease Control and Prevention (CDC) use to identify where HIV transmission is happening by mapping the social and sexual networks of people living with HIV. This process involves using blood tests taken from people living with HIV for drug resistance testing. The blood is then sent – without that person’s consent or knowledge – for sequencing of the HIV viral genome. Public health professionals compare these genomic sequences to look for similarities, differences and to identify HIV transmission trends. (Learn more about MHS from the US People Living with HIV Caucus here!)

MHS has been happening for years. All national networks of People living with HIV and scores of human rights and data privacy advocates have raised serious concerns that the personal medical information of people living with HIV is being used 1) for surveillance purposes without meaningfully involving people living with HIV in program planning, 2) without informed consent, 3) without sufficient data privacy protections to ensure public health data not be used in civil, criminal or immigration proceedings, and 4) in a dangerous political environment where people living with HIV and communities most impacted by HIV continue to be over-policed, over-surveilled, and under-protected. In this context, MHS gives the government even more data on the bodies of people living with HIV, which can then introduce new ways to police and control them.

Here’s where PACHA comes into play: In October 2022, PACHA unanimously passed an historic and much needed Resolution on Molecular HIV Surveillance and Cluster Detection Response. Specifically, the resolution clearly and forcefully recommends that the CDC address some of the serious concerns raised by human rights advocates. PACHA recommended that the CDC tell jurisdictions to adapt their implementation of MHS/CDR to account for local conditions, including health data privacy protections and laws criminalizing people living with HIV, and to allow folks to opt out of HIV data sharing. This would open the door for jurisdictions to halt molecular HIV surveillance until concerns about HIV data privacy and criminalization are addressed, and to ensure that people living with HIV can consent to how their genetic data is used.

During the most recent PACHA meeting, Office of National AIDS Policy (ONAP) Director Harold Philips presented a federal government response to PACHA’s resolution, asserting that CDC would not take up the PACHA  recommendations pertaining to informed consent and that ONAP was not in support of pausing molecular HIV surveillance activities while state-level data privacy protections are put in place. During public comment, all people living with HIV who spoke went on record to revoke consent of their HIV genomic sequence data being used with the following statement. “I hereby revoke consent for the sharing of any health information related to my HIV diagnosis, genotyping, or any other related information.”

It is unacceptable for the CDC to continue funding MHS as a core federal HIV strategy without taking responsibility to ensure that sensitive health data is robustly protected and that human rights of vulnerable communities are not undermined. The federal government, including CDC, must use every lever of power to ensure consistent and robust data protections regardless of who someone is or where they live. We will continue to demand that the federal government enact protections and end any forms of data surveillance that place QTBIPOC communities in harm’s way.

Join us by signing onto the US People Living WIth HIV’s Open Letter demanding moratorium on MHS.

• The U.S. Department of Health and Human Services finalized policies aimed at making coverage more accessible, expanding behavioral health care access, and making it easier for people to select a health plan in 2024. There is a multi-part interpretation of the new policies through part 1, 2, and 3 linked here.  
• Exciting progress! The Biden administration announced a plan to expand health care coverage for Deferred Action for Childhood Arrivals (DACA) recipients. This is crucial because all people, including immigrants, deserve access to healthcare. 
• The Federal Drug Administration (FDA) approved the overdose-reversing drug, Narcan, to be accessible over-the-counter without a prescription, which is important progress for harm reduction and ensuring the life-saving medication is available when needed and in time. 
• Tennessee has gone from blocking $8.3 million in annual federal funds for HIV prevention, surveillance and treatment to including a new allotment of $9 million in the state budget approved Thursday to combat HIV. This is an important development but there are still serious concerns regarding the distribution and whether the funding will go toward the programs and people in an equitable manner. 
• Colorado’s state legislature has advanced a bill to study universal healthcare in the state. 

• The Department of Health and Human Services (HHS) has proposed new measures to bolster patient-provider confidentiality around reproductive health care, important steps to protect patients seeking abortion care. 
• Michigan’s governor, Gretchen Whitmer, repealed a 1931 abortion ban. 
• The Governor of Idaho signed a first of its kind law in the U.S. that would make it illegal to either obtain abortion pills for a minor, or help them leave the state for an abortion without their parent’s consent.
• Florida passed a six-week abortion ban which would make getting an abortion in the U.S. South go from hard to near impossible. 

• Colorado passed and signed into law three bills increasing access to protected health care in the state, including abortion and gender-affirming care. Congratulations to the PWN-CO chapter for throwing down to support and pass this historic bill package! 

• After national spotlight, the expulsion and reinstatement of two Black lawmakers shows the danger of the continuing and growing concentration of power among cis white men. 
• Advocates in Cleveland are resisting plans for a “modern” detention center in Cuyahoga County, arguing that the attempts to address inhumane jail conditions is futile because there is no such thing as a “humane” jail. 

• The Republican-led U.S. House of Representatives passed a devastating debt limit bill. The bill would slash domestic government funding, including  forcing cuts to key programs such as the Supplemental Nutrition Food Assistance Program (SNAP), commonly known as food stamps. The bill will not pass the Senate, but is an open move in the coming fight over the debt limit and federal budget.
• Iowa lawmakers approved a bill limiting SNAP benefits by requiring a new asset test for people receiving food assistance benefits and regular eligibility checks. But fraud is low and deserving families could lose crucial benefits.

• The latest attempt to modernize Indiana’s antiquated HIV criminalization laws failed but people living with HIV will continue to fight for HIV decriminalization in the next legislative cycle. 
• Organizers in Jackson, Mississippi are resisting a 2-tiered legal system in the majority Black city by educating and canvassing their communities. In another form of resistance, legal advocates at The National Association for the Advancement of Colored People (NAACP), sued the state of Mississippi for taking control of the police and some courts out of the hands of residents.

• The Supreme Court rejected West Virginia’s request to enforce its anti-trans sports law for now. This means young trans folks will not be barred from playing on sport teams that match their gender identity while this case makes its way through the courts.
• Congressional lawmakers reintroduced a federal Trans Bill of Rights as opposing lawmakers tried to advance an anti-LGBTQ bill that would have banned trans girls from playing school sports with their peers. 
• A proposal by the Education Department would make anti-trans sports bans a violation of federal law. Although this proposal is needed, it does not go far enough because it allows some restrictions for competitive high school and college sports. 
• Attacks on the humanity and dignity of LGBTQ+ people continue throughout the country. Indiana and Idaho have signed into law bills banning gender-affirming care for minors. Additionally, both Florida and Nebraska advanced bans on gender-affirming care for minors.
• While Missouri lawmakers target gender-affirming procedures for minors, Missouri’s Attorney General went after gender-affirming care for people of all ages, including adults.
• A Trump-appointed Texas judge ruled against immediate relief for West Texas A&M students facing a drag show ban. Such drag show bans represent a chilling attack on free speech and LGBTQ+ bodies in public spaces. This order means the West Texas A&M drag ban will stay in place for now. 
• North Dakota’s governor signed two transgender athlete bans into law, effectively prohibiting trans girls and women from joining “female” sports teams in K-12 and college. 
• Washington became the sixth state to pass a shield law protecting trans residents, medical providers, as well as out-of-state visitors seeking gender-affirming care. 
• Florida’s board of education approved the expansion of the state’s dangerous so-called “don’t say gay” bill, which now prohibits discussions of sexual orientation and gender identity at school across all grade levels.