US: Doctors report dangerous delays in care among migrants fearing deportation

Since President Trump announced plans for mass deportations and rescinded protections for hospitals and clinics, health care facilities have seen a jump in no-shows.

A man lay on a New York City sidewalk with a gun shot wound, clutching his side.

Emily Borghard, a social worker who hands out supplies to the homeless through her nonprofit, found him and pulled out her phone, preparing to dial 911. But the man begged her not to make the call, she said.

“No, no, no,” he said, telling her in Spanish that he would be deported.

Ms. Borghard tried to explain that federal law required hospitals to treat him, regardless of his immigration status, but he was terrified.

“He said, ‘If I go to the emergency department, that will put me on their radar,’” she recalled in an interview recounting the incident.

Across the country, doctors, nurses and social workers are increasingly concerned that people with serious medical conditions, including injuries, chronic illnesses and high-risk pregnancies, are forgoing medical care out of fear of being apprehended by immigration officials. Since the Trump administration announced plans for mass deportations and rescinded a Biden-era policy that protected spaces like hospitals, medical clinics and churches from immigration enforcement, doctors said they have seen sharp increases in patient anxiety and appointment no-show rates.

If the trend continues, health care officials say, the list of consequences could be long: Infectious diseases circulating unnecessarily; worsening health care costs because of untreated chronic illnesses; and dangerous birth complications for women who wait too long to seek help, among others.

In a survey conducted by KFF, a health policy research organization, 31 percent of immigrants said that worries about immigration status — their own or that of a family member — were negatively affecting their health. About 20 percent of all immigrants surveyed said they were struggling with their eating and sleeping; 31 percent reported worsened stress and anxiety.

A White House spokesman did not respond to messages seeking comment. When the administration announced that it was ending protections at hospitals on Jan. 21, a statement from the Department of Homeland Security said the new policy was intended “to enforce our immigration laws and catch criminal aliens.”

Research has shown that immigration crackdowns are linked with poorer birth outcomes and mental health status, lapses in care, and fewer people accessing the types of public programs that reduce illness and poverty overall.

“We’re really creating not just very serious health risks, but economic risks in the long run for our country,” said Julie Linton, a pediatrician and member of the committee on federal government affairs for the American Academy of Pediatrics. “These policies are creating very real fear and uncertainty for people and have a tremendous impact on their ability to function on a day-to-day level.”

Many immigrant communities suffer from high rates of chronic conditions such as high blood pressure and diabetes, which, if left untreated, can lead to heart attack, stroke and other grave complications.

That is why doctors worry about patients like Maria, a 47-year-old woman with pre-diabetes, who has been going to the same primary care clinic ever since she arrived in the United States from El Salvador 20 years ago. Even during the first Trump administration’s crackdown on immigration, she continued to seek medical care. But when the protections around hospitals and clinics were rescinded earlier this year, Maria canceled her appointment to have her blood sugar checked, a routine and crucial element of diabetes prevention in patients like her.

“We’re very scared of being in the clinic and having ICE arrive while waiting to be called,” she said in Spanish, referring to U.S. Immigration and Customs Enforcement.

Maria, who asked that her last name not be published, said that she is in a state of “constant anguish.” She said she avoids leaving the house and is working on a plan for the care of her children, who are American citizens, in case she and her husband are deported.

One of their daughters, who is 15, is being treated for fatty liver disease and the other, 11, needs therapy for a developmental condition. Their older daughter has another doctor’s appointment in June. Maria and her husband don’t want to interrupt her care, but they are worried about taking her there themselves. “It’s very complicated,” Maria said. “I can put myself at risk for my children. But if it’s for my own health, I prefer to let it go.”

The consequences of abandoning regular medical care can turn serious quickly, however. Jim Mangia, president of St. John’s Community Health Network in Los Angeles, described one patient with diabetes who stopped showing up for a weekly diabetes education class. When a clinic staff member called the woman, they discovered she was afraid to even go to the grocery store, and had been subsisting for days on tortillas and coffee, he said.

“Thank God we reached her and she came in,” said Mr. Mangia, whose network serves an estimated 25,000 undocumented patients across more than 20 locations. Tests at the clinic showed that her blood sugar had become dangerously high.

“That’s what we’re going to see more and more of,” Mr. Mangia said. “It kind of breaks my heart to talk about it.”

For doctors working in urgent care settings, a drop-off in immigrants has become apparent through some unusual metrics. For example, Dr. Amy Zeidan, an emergency room physician in Atlanta, said that requests for Spanish-language interpretation in her hospital’s emergency department had fallen more than 60 percent from January to February.

Theresa Cheng, an emergency room physician at Zuckerberg San Francisco General Hospital and Trauma Center, said one of her residents had seen an immigrant patient who had suffered multiple facial fractures from an assault, but had not sought care for more than two weeks. “There is tremendous fear,” Dr. Cheng said.

In late January, Dr. Cheng said, she saw a patient who arrived with severely untreated diabetes. The patient, an undocumented woman, said she had waited to receive help because she was scared. She died that day.

Dr. Carolina Miranda, a family physician in the Bronx, spoke of a patient who had been granted asylum but, fearful of ICE, had failed to show up for a doctor’s appointment about a possible brain tumor.

Similar delays or cancellations are arising among pregnant women and new mothers, according to obstetrician-gynecologists around the country. Dr. Caitlin Bernard, an obstetrician in Indiana, said a patient had skipped her postpartum visit, explaining that she would no longer be leaving her house. On an obstetrics floor in a San Diego hospital, multiple staff members said they had seen an overnight drop-off following the inauguration in the number of immigrant women coming in with acute issues during their pregnancies.

“Obviously those women still exist,” said one doctor, who asked not to be identified because her employer forbade her from speaking publicly on the matter. “I fear it’s going to increase maternal mortality over time.”

Many of the children of immigrant parents who have skipped appointments or left medications unfilled are American citizens. But in mixed-status families, parents who are at risk of deportation are often unwilling to take the risk of going to the clinic or pharmacy.

A pediatrician at a health center that cares for underserved populations on the central coast of California reported a 30 percent increase in no-shows for pediatric appointments. Many of those who do bring their children, and are referred elsewhere for specialty care, such as speech therapy, or an autism evaluation, refuse, saying they are too frightened, said the pediatrician, who asked to be unidentified because he wasn’t authorized to speak publicly.

Dr. Tania Caballero, a pediatrician at Johns Hopkins who sees patients at a health center for underserved groups called Baltimore Medical System, said she had encountered parents who had not wanted to go with their babies to the emergency room out of fear, and parents of children with chronic conditions like cerebral palsy, asthma, and Type 1 diabetes who had told her they have stopped getting vital care.

“I tell patients, ‘I can’t control what happens outside of my space, and I can’t control if somebody comes into my space, But you know me. I have the tools, and I want to help you navigate this journey and do it together,’” she said.

Some parents of children in other dire situations — such as those receiving cancer treatment — are hoping that their child’s condition might actually protect them. Some have asked pediatricians for letters explaining their child’s medical requirements, in hopes that immigration officials who detain them might be convinced that the child needs to stay in the United States to survive.

Dr. Lisa Gwynn, a pediatrician in South Florida who serves families from across the Caribbean and South America, said that her plummeting patient attendance rate is particularly worrisome because patients are missing out on childhood vaccines necessary for preventing diseases like measles, pneumonia and whooping cough.

Dr. Gwynn also worries that without coming to see her, children who have experienced severe trauma before coming to the United States aren’t being connected to social workers or psychologists who can help.

“Imagine your children living in a home where everyone’s scared, and they’ve come to this country to not feel scared anymore,” she said. “We know that stress does not fare well for health. Period. Kids don’t perform as well in school, they have mental health issues, depression, anxiety.”

Some medical facilities have said they will comply with immigration officials. NYU Langone, in New York City, sent a memo to employees warning them not to try to protect illegal migrants. But many other health centers and organizations are finding ways to take a stand, telling staff to display “Know Your Rights” information on the walls and to never record their immigration status in a patient’s medical records.”

Last week, the New England Journal of Medicine published an article by two doctors and a lawyer detailing how physicians can continue to provide health care and lawfully push back in the face of some ICE requests.

The St. John’s clinic network in Los Angeles recently launched an ambitious home visitation program in which a doctor, nurse and medical assistant visit patients where they live to perform exams and deliver medications. They aim to inform all 25,000 of their undocumented patients of this option.

In the New York area, a hospital association suggested designating a “hospital liaison” who can be paged to quickly usher an agent into a private office, and then ask to see a signed warrant, which would then be reviewed by in-house counsel.

At the emergency room of University Hospital, a safety net facility in Newark, staff members hand out cards, in Spanish and other languages, reminding patients of their rights. “You have the right to refuse consent for immigration or the police to search yourself, your car or your home,” the cards state.

But even there, the fear is palpable. Annalee M. Baker, an emergency physician, said she had seen a young woman who said her partner had beaten her until she was unconscious. Covered in welts and bruises, she had waited hours to come in. The reason given: she was terrified that her partner would be deported.

Dr. Baker also treated a minor who had been stabbed; she had needed his parents’ consent to treat him, but the boy had been skittish about providing any details about them, out of fear they might be caught in the immigration dragnet.

Still, it is the people who never come in at all that haunt Dr. Baker the most.

“The tragic message to these people is: Be a shadow and hope that you do not die.”

Sarah Kliff contributed reporting.

Emily Baumgaertner Nunn is a national health reporter for The Times, focusing on public health issues that primarily affect vulnerable communities.

Nina Agrawal is a Times health reporter.

Jessica Silver-Greenberg is a Times investigative reporter writing about big business with a focus on health care. She has been a reporter for more than a decade.

US: Trump’s promise of mass deportations is deepening mistrust of the health care system among California’s immigrants

Community health workers say fear of deportation is already affecting participation in California’s Medicaid program.

President-elect Donald Trump’s promise of mass deportations and tougher immigration restrictions is deepening mistrust of the health care system among California’s immigrants and clouding the future for providers serving the state’s most impoverished residents.

At the same time, immigrants living illegally in Southern California told KFF Health News they thought the economy would improve and their incomes might increase under Trump, and for some that outweighed concerns about health care.

Community health workers say fear of deportation is already affecting participation in Medi-Cal, the state’s Medicaid program for low-income residents, which was expanded in phases to all immigrants regardless of residency status over the past several years. That could undercut the state’s progress in reducing the uninsured rate, which reached a record low of 6.4% last year.

Immigrants lacking legal residency have long worried that participation in government programs could make them targets, and Trump’s election has compounded those concerns, community advocates say.

The incoming Trump administration is also expected to target Medicaid with funding cuts and enrollment restrictions, which activists worry could threaten the Medi-Cal expansion and kneecap efforts to extend health insurance subsidies under Covered California to all immigrants.

“The fear alone has so many consequences to the health of our communities,” said Mar Velez, director of policy with the Latino Coalition for a Healthy California. “This is, as they say, not their first rodeo. They understand how the system works. I think this machine is going to be, unfortunately, a lot more harmful to our communities.”

Alongside such worries, though, is a strain of optimism that Trump might be a boon to the economy, according to interviews with immigrants in Los Angeles whom health care workers were soliciting to sign up for Medi-Cal.

Selvin, 39, who, like others interviewed for this article, asked to be identified by only his first name because he’s living here without legal permission, said that even though he believes Trump dislikes people like him, he thinks the new administration could help boost his hours at the food processing facility where he works packing noodles. “I do see how he could improve the economy. From that perspective, I think it’s good that he won.”

He became eligible for Medi-Cal this year but decided not to enroll, worrying it could jeopardize his chances of changing his immigration status.

“I’ve thought about it,” Selvin said, but “I feel like it could end up hurting me. I won’t deny that, obviously, I’d like to benefit — get my teeth fixed, a physical checkup.” But fear holds him back, he said, and he hasn’t seen a doctor in nine years.

It’s not Trump’s mass deportation plan in particular that’s scaring him off, though. “If I’m not committing any crimes or getting a DUI, I think I won’t get deported,” Selvin said.

Petrona, 55, came from El Salvador seeking asylum and enrolled in Medi-Cal last year.

She said that if her health insurance benefits were cut, she wouldn’t be able to afford her visits to the dentist.

A street food vendor, she hears often about Trump’s deportation plan, but she said it will be the criminals the new president pushes out. “I’ve heard people say he’s going to get rid of everyone who’s stealing.”

Although she’s afraid she could be deported, she’s also hopeful about Trump. “He says he’s going to give a lot of work to Hispanics because Latinos are the ones who work the hardest,” she said. “That’s good, more work for us, the ones who came here to work.”

Newly elected Republican Assembly member Jeff Gonzalez, who flipped a seat long held by Democrats in the Latino-heavy desert region in the southeastern part of the state, said his constituents were anxious to see a new economic direction.

“They’re just really kind of fed up with the status quo in California,” Gonzalez said. “People on the ground are saying, ‘I’m hopeful,’ because now we have a different perspective. We have a businessperson who is looking at the very things that we are looking at, which is the price of eggs, the price of gas, the safety.”

Gonzalez said he’s not going to comment about potential Medicaid cuts, because Trump has not made any official announcement. Unlike most in his party, Gonzalez said he supports the extension of health care services to all residents regardless of immigration status.

Health care providers said they are facing a twin challenge of hesitancy among those they are supposed to serve and the threat of major cuts to Medicaid, the federal program that provides over 60% of the funding for Medi-Cal.

Health providers and policy researchers say a loss in federal contributions could lead the state to roll back or downsize some programs, including the expansion to cover those without legal authorization.

California and Oregon are the only states that offer comprehensive health insurance to all income-eligible immigrants regardless of status. About 1.5 million people without authorization have enrolled in California, at a cost of over $6 billion a year to state taxpayers.

“Everyone wants to put these types of services on the chopping block, which is really unfair,” said state Sen. Lena Gonzalez, a Democrat and chair of the California Latino Legislative Caucus. “We will do everything we can to ensure that we prioritize this.”

Sen. Gonzalez said it will be challenging to expand programs such as Covered California, the state’s health insurance marketplace, for which immigrants lacking permanent legal status are not eligible. A big concern for immigrants and their advocates is that Trump could reinstate changes to the public charge policy, which can deny green cards or visas based on the use of government benefits.

“President Trump’s mass deportation plan will end the financial drain posed by illegal immigrants on our healthcare system, and ensure that our country can care for American citizens who rely on Medicaid, Medicare, and Social Security,” Trump spokesperson Karoline Leavitt said in a statement to KFF Health News.

During his first term, in 2019, Trump broadened the policy to include the use of Medicaid, as well as housing and nutrition subsidies. The Biden administration rescinded the change in 2021.

KFF, a health information nonprofit that includes KFF Health News, found immigrants use less health care than people born in the United States. And about 1 in 4 likely undocumented immigrant adults said they have avoided applying for assistance with health care, food, and housing because of immigration-related fears, according to a 2023 survey.

Another uncertainty is the fate of the Affordable Care Act, which was opened in November to immigrants who were brought to the U.S. as children and are protected by the Deferred Action for Childhood Arrivals program. If DACA eligibility for the act’s plans, or even the act itself, were to be reversed under Trump, that would leave roughly 40,000 California DACA recipients, and about 100,000 nationwide, without access to subsidized health insurance.

On December 9, a federal court in North Dakota issued an order blocking DACA recipients from accessing Affordable Care Act health plans in 19 states that had challenged the Biden administration’s rule.

Clinics and community health workers are encouraging people to continue enrolling in health benefits. But amid the push to spread the message, the chilling effects are already apparent up and down the state.

“¿Ya tiene Medi-Cal?” community health worker Yanet Martinez said, asking residents whether they had Medi-Cal as she walked down Pico Boulevard recently in a Los Angeles neighborhood with many Salvadorans.

“¡Nosotros podemos ayudarle a solicitar Medi-Cal! ¡Todo gratuito!” she shouted, offering help to sign up, free of charge.

“Gracias, pero no,” said one young woman, responding with a no thanks. She shrugged her shoulders and averted her eyes under a cap that covered her from the late-morning sun.

Since Election Day, Martinez said, people have been more reluctant to hear her pitch for subsidized health insurance or cancer prevention screenings.

“They think I’m going to share their information to deport them,” she said. “They don’t want anything to do with it.”

Australia: Criminalisation fuels healthcare disparities for migrants living with HIV

HIV in Australia: shades of injustice remain

Elimination is the goal, but migrants living with the virus experience a criminalised environment that thwarts access to care.

Health Minister Mark Butler painted a largely rosy picture of the progress towards elimination of HIV in Australia today, speaking on the second morning of the ASHM HIV/AIDS Conference in Sydney.

A legal academic, however, said people with HIV in Australia were still living under a pall of criminalisation, none more so than migrants.

Mr Butler praised the Australian response to the epidemic, especially in NSW, which was most affected in the early days.

“Since HIV was first detected more than 40 years ago in Australia, Australia’s response has been one to be proud of,” he said.

“When you go back to those early years, AIDS was highly feared here as it was around the world. There was huge stigma, misinformation, homophobia and such loss and so much grief for communities.

“But Australia’s response early on was characterised by partnership and collaboration: governments, people living with HIV, communities affected by HIV, non-government organisations, health professionals and academics all came together and worked together.”

He said HIV notifications were declining in Australia, at one of the fastest rates in the world – “but as you have all heard, I’m sure, transmission has also gone up in 2023, reminding us there is always more work to be done”.

“Eliminating transmission of HIV here in Australia is ambitious, but I am absolutely assured it is now achievable,” he said today, citing inner Sydney – once the epicentre of the epidemic – as a place that had effectively achieved elimination.

Mr Butler set up the HIV Taskforce last year with a goal to “virtually” eliminate transmission by 2030. The Ninth National HIV Strategy covers from last year to 2030, continuing the work of the Eighth – whose goal was virtual elimination by 2022.

He said transmission rates had grown “among temporary residents who are here in Australia on work or study visas”.

“So we will provide subsidised access to PrEP to make healthcare more equitable for people who don’t have access to Medicare … We will make sure that at-risk populations can get free HIV self-testing kits through an expansion of the national HIV self-test mailout program [run by the National Association of People with HIV Australia (NAPWHA)] as well as HIV self-testing vending machine programs,” said Mr Butler.

For David Carter, Scientia Associate Professor at the faculty of Law & Justice at UNSW, the necessary changes for people on visas won’t be found in any vending machine but in immigration policy.

Professor Carter, who leads the Health+Law Research Partnership for social justice for people living with HIV or hepatitis B, walked through the history of “unjust and unhelpful” HIV criminalisation in Australia – a public policy environment that includes but is not limited to action by law enforcement and courts. It begins with the creation of a “suspect population”.

He quoted the very first National HIV Strategy in 1987, which warned of the “temptation” of criminalisation measures, including “universal or selective testing, closure of gay venues, criminal penalties for transmission, compulsory notification of HIV infection and restrictions on freedoms of infected people through limitations on employment, quarantine or compulsory detention”, and noted these would jeopardise health measures to prevent transmission.

A working party in 1992 concluded that “even in the face of decisions by individuals that generate harm, it was the wrong decision to restrict the free choice of individuals in modern society, as draconian measures would merely alienate people at risk of infection and deter them presenting for counselling, testing and treatment”.

While pressure to enforce such measures may have been largely resisted, and the situation for Australians has greatly improved, migrants living with HIV are still experiencing an alienating and hostile environment, said Professor Carter.

Characterising them as posing potential harm to Australians “establishes an adversarial relationship between the person living with HIV and the state” and compromises health care by promoting defensive behaviour.

He and his team have interviewed migrants in Australia living with HIV over the past two years, for whom “criminalisation is indeed very active, and it is producing serious, negative health and other impacts of individuals or communities and respects”.

He quoted one interviewee, “Sergio”, who told the team: “I don’t have to face any court, but I did have to prove that I wasn’t a bad person just because I have HIV.”

Others spoke of experience going through the migration process as being “subject to an unending interrogation”.

“Laurence” told his interviewer: “It’s like a tattoo on your mind. The government will treat you different for every single step of your life from here on out.”

“Manish”, who was on a temporary visa, avoided getting tested for 10 months after beginning to suspect he had HIV, for fear of having his visa revoked. His health deteriorated during this time.

“The elevated threat levels produced by the interaction of migration law and public health law … significantly harmed Manish’s health, caused psychological distress and steered him towards coping responses that denied him the testing and treatment, access to medical care and other supports that he deserves and that we all collectively affirm are essential and are his right,” said Professor Carter.

“Manish said to us: ‘I feel like if I had reassurance that nothing’s going to happen to me if I tested positive for this, I would not have been afraid to go and get a test for HIV’.”

Others described feelings of “hopelessness and depression, because there is no hope for us to stay permanently while living with HIV” (in fact there are pathways for permanent migration despite living with HIV). These people would go for weeks without medication in a form of self-sabotage “because they just don’t have hope for their future anymore”.

For these and other people like them, the Australian environment “is just a set of undifferentiated threats to autonomy, wellbeing and safety, to which they are forced to respond with adaptation, distancing and adopting a posture of self-defence”.

Professor Carter concluded that “it may be different today [from the 90s], but it is not over, and it won’t be over here or elsewhere until the stigma of HIV, unconventional sexuality and drug use are gone”.

The HIV/AIDS Conference is running in Sydney this week back-to-back with the 25th IUSTI World Congress.

HIV Is Not A Crime Awareness Day goes global!

Next Wednesday 28th February is HIV Is Not A Crime Awareness Day.

For the first time, HIV Is Not A Crime Awareness Day – which began two years ago in the United States – has gone global! This year’s theme is: “You care about ending HIV criminalisation – you just don’t know it yet!”

That’s why we’ll be producing a very special episode of our webshow, HIV Justice Live! on this important new date for global HIV decriminalisation activism, where I’ll be joined on my ‘virtual sofa’ by an inspiring group of community-based expert activists – Florence Riako Anam (GNP+); HIV and human rights consultant, Michaela Clayton; Mikhail Golichenko (HIV Legal Network); and Andy Tapia and Kerry Thomas (SERO Project) – to explain why HIV criminalisation impacts us all, and what you can do about it.

We’ll be streaming live to YouTube and Facebook, so you’ll be able to interact with us during our Q&A session. By March 1st, Zero Discrimination Day, the show will also be available on our YouTube channel where it will be subtitled in English, allowing for automatic translation into any language.

HIV Is Not A Crime Awareness Day was the brainchild of our long-time HIV JUSTICE WORLDWIDE partner, the SERO Project’s co-Executive Director, Kamaria Laffrey. HIV Is Not A Crime Awareness Day was launched two years ago in collaboration with the Elizabeth Taylor AIDS Foundation, community activists and public policy organisations across the United States and grown in size and prominence ever since.

HIV Is Not A Crime Awareness Day takes place on 28th February for several reasons. It’s a date that bridges two major US awareness months – Black History Month in February and Women’s History Month in March. And it’s also a symbolic nod to the legacy of the late Hollywood icon and early AIDS activist, Elizabeth Taylor, who was born on 27th February.

HIV Is Not A Crime Awareness Day is an opportunity to amplify the voices of those who have been criminalised based on their HIV status; to remind people of the negative impacts of HIV criminalisation on health and rights; to celebrate the work of many individuals who are part of the growing global movement to end HIV criminalisation; and to recognise that there’s still much to do to achieve HIV JUSTICE WORLDWIDE.

You can find out what other events are taking place on and around HIV Is Not A Crime Awareness Day by visiting a dedicated Facebook page or by following the hashtag #HINACDay.

US: Updated CDC guidelines on Molecular HIV Surveillance do not go far enough, believe HIV advocates

CDC updates privacy guidelines for HIV sample tracking

Guidelines relating to a controversial practice used by American state and local health departments to curb HIV infections were updated last week by the US Centres for Disease Control and Prevention – but have not gone far enough, believe some experts.

The guidelines track the genetic signatures of viruses collected from people newly diagnosed with HIV, and the updated policy encourages health officials to be more transparent about the process, one of many changes sought by HIV advocacy organisations concerned about how so-called molecular surveillance could violate patients’ privacy and civil rights.

The New York Times reports that the agency stopped short of adopting more significant changes some had been pushing for, like allowing health agencies to opt out in states where people can be prosecuted for transmitting HIV.

“We’re in a period where health data are increasingly used in criminal prosecutions, as seen in prosecutions of people seeking abortion care or who might have miscarried,” said Carmel Shachar, a professor at Harvard Law School who specialises in healthcare. The revised policy did not go far enough, she said, to protect people with HIV.

Dr Alexandra Oster, who leads the CDC’s molecular surveillance team, said the benefits of the programme far exceed the risks. “We need to do it well,” she said. “But we need to keep doing it.”

HIV has a distinctive genetic signature in each person that helps doctors decide which drugs are likely to thwart it. But the information can also be used to track its spread through a population – including identifying clusters of people who carry closely-related viruses.

The CDC has, for decades, used molecular surveillance to track flu, salmonella and, more recently, Covid.
In 2018, it began requiring health departments that received federal funding for HIV programmes to share such data gleaned from people with the virus. Patients do not have to be informed that their viral samples are tracked.

Molecular surveillance has identified more than 500 HIV clusters in the country since 2016, the CDC said.

Health officials can then interview people in the clusters to identify their sexual or drug-use partners and connect them to testing, needle exchanges and medications that block transmission.

But many HIV activists have long argued that such tracking could violate people’s rights and discourage testing and treatment.

Before the information is reported to the CDC, health departments strip it of information that could readily identify the patient. But personal data are held by state and local health departments.

In some states, people have been prosecuted for transmitting HIV or for not telling their partners that they carry it. No criminal prosecution in the United States has been known to involve molecular surveillance data, but activists remain wary of the possibility.

They also fear that advances in technology might eventually be able to determine who infected a specific person.

In October, 110 HIV and human-rights groups sent a letter to the CDC expressing “serious concerns” that molecular surveillance was carried out without the informed consent of people with HIV.

The CDC said that it had a meeting with the activist coalitions’ representatives last year and incorporated their input in the revised policy.

A similar conflict arose in the late 1990s, when the CDC pushed for states to collect names of diagnosed people in state-run databases, which the agency said would help combat a disease that by then had killed hundreds of thousands of Americans. But many activists protested the policy, delaying its rollout for a decade.

Since 2008, all states have collected the names of people diagnosed with HIV.

The CDC said the information is secure, and that it knew of only one names-related data breach – in Florida in 1996. It said it knew of no such privacy violations related to molecular surveillance data.

The new policy did not allow waivers for opting out of molecular surveillance in places where such data could be used in criminal proceedings, a change that had been recommended by the National Alliance of State and Territorial Aids Directors, a non-profit representing public health officers.

Representatives from more than 40 state or county health departments that the federal government prioritises for HIV prevention told The New York Times that the molecular surveillance policy had been generally useful in their efforts to prevent transmission. None knew of any data breaches.

IAS 2023: Five-year impact of Expert Consensus Statement – poster published today

Today, 24th July, at the 12th IAS Conference on HIV Science on Brisbane, we presented our research findings on the five-year impact of the ‘Expert Consensus Statement on the Science of HIV in the Context of Criminal Law’.

Click on the image above to download the pdf of the poster

Tomorrow, 25th July, we will publish the full research report and discuss the findings on our live webshow, HIV Justice Live!

Hosted by HJN’s Executive Director, Edwin J Bernard, the show will include a discussion with the report’s lead author, HJN’s Senior Policy Analyst Alison Symington, as well as interviews with Malawian judge Zione Ntaba, Taiwan activist Fletcher Chui, and SALC lawyer Tambudzai Gonese-Manjonjo on the Statement’s impact.

We’ll also hear from some of the Expert Consensus Statement’s authors, including Françoise Barré-Sinoussi, Salim S Abdool Karim, Linda-Gail Bekker, Chris Beyrer, Adeeba Kamarulzaman, Benjamin Young, and Peter Godfrey-Faussett.

Ugandan lawyer and HJN Supervisory Board member Immaculate Owomugisha will also be joining us live from the IAS 2023 conference where she is serving as a rapporteur, to discuss the Statement’s relevance today.

HIV Justice Live! Episode 5: Bringing Science to Justice will be live on Facebook and YouTube on Tuesday 25th July at 3pm CEST (click here for your local time).

US: Presidential Advisory Council on HIV/AIDS (PACHA) issues resolution on Molecular HIV Surveillance and Cluster Detection

PACHA Unanimously Approves Resolution to Create Safeguards for People Living with HIV

PACHA UNANIMOUSLY APPROVES RESOLUTION TO CREATE SAFEGUARDS FOR PEOPLE LIVING WITH HIV

Directs CDC to Adapt Surveillance Activities to Better Protect Human Rights for Vulnerable Communities

October 18, 2022–PWN commends and applauds the Presidential Advisory Council on HIV/AIDS (PACHA) for their leadership in unanimously passing an historic resolution that is critical to protecting the human rights and dignity of people living with HIV, the Resolution on Molecular HIV Surveillance and Cluster Detection Response.

This resolution responds to concerns raised by public health officials and community advocates, especially networks of people living with HIV and human rights and data privacy experts, and urges the Centers for Disease Control and Prevention (CDC) to change their guidance on cluster detection and response (CDR) activities. Specifically, the resolution clearly and forcefully recommends that the CDC direct jurisdictions funded for such activities adapt their implementation of CDR to account for local conditions, including health data privacy protections and laws criminalizing people living with HIV.

“Basically, PACHA told the CDC that local context matters: if jurisdictions do not have adequate safeguards to protect the human rights and privacy of people living with HIV, the CDC must allow for a moratorium on CDR activities,” said Kelly Flannery, policy director at Positive Women’s Network-USA. “There is still room to create more robust protections for people living with HIV, such as informed consent standards. Going forward, we must ensure that there are no further developments and integration of new public health surveillance technologies impacting people living with HIV absent community input, oversight, and specifically involvement from networks of PLHIV.”

In the resolution, PACHA also urged CDC to work in partnership with networks of people living with HIV to create a stronger system of informed consent around the use of molecular HIV surveillance data. U.S.-based networks of PLHIV have been sounding the alarm about molecular HIV surveillance (MHS) since 2018, when the federal government first required that states and jurisdictions scale up the use of molecular surveillance technologies and activities as a condition of HIV prevention funding. By 2019, MHS was named one of the core pillars of the federal “End the HIV Epidemic” (EHE) Plan.

“As a result of massive mobilization and outcry by networks of people living with HIV and our allies, yesterday, we finally saw a response addressing community concerns,” said Venita Ray, co-executive director of Positive Women’s Network-USA. “Now it’s time for the CDC to take swift action to implement the recommendations from PACHA and networks of PLHIV.”

This resolution is a tremendous step forward for communities that are dually most impacted by HIV and by surveillance and policing – especially Black, Indigenous and People of Color, migrants, queer and transgender people, people who use drugs, those who work in in the sex trade, and those with the least access to quality, affordable healthcare. We are deeply appreciative to PACHA leadership and to the PACHA Stigma and Disparities Subcommittee for their tremendous efforts in response to concerns from networks of people living with HIV.

Now that it has now been unanimously approved by PACHA, what happens next will speak to the character and integrity of the CDC. Failing to implement these recommendations would represent an egregious breach of public trust. We will be closely monitoring the adoption of these important recommendations throughout the federal response.

The full PACHA resolution is available here.

Why people living with HIV should not be criminalised for donating blood

Preventing the transmission of blood-borne infection by imposing limitations on the donation of blood is an important and legitimate public health objective.

Since the beginning of the HIV epidemic, certain groups – including, but not limited to, gay men and other men who have sex with men – have been subjected to restrictions on their ability to give blood.

Sustained advocacy by gay rights organisations in many high-income countries has focused on the discriminatory nature of these so-called ‘gay blood bans’, highlighting significant advances in blood screening capabilities. This has led to a general softening of restrictions on blood donations for gay men in many of these countries – allowing donations with ‘deferral periods’, or allowing donations based on individual risk assessments.

However, this advocacy has generally not translated into the removal of HIV-specific criminal laws for donating blood, nor has there been a call for a moratorium on singling out people living with HIV for donating blood using non-HIV-specific general criminal laws – even though many of the same public health and human rights arguments apply to both the so-called ‘gay blood bans’ and to HIV criminalisation more generally.

That is why today, the HIV Justice Network has published Bad Blood: Criminalisation of Blood Donations by People Living with HIV. The report was written by Elliot Hatt and edited by Edwin J Bernard, based on research undertaken by Sylvie Beaumont, with additional input provided by Sarai Chisala-Tempelhoff and Paul Kidd (HIV Justice Network’s Supervisory Board); Sean Strub (Sero Project) and Robert James (University of Sussex).

We found that 37 jurisdictions in 22 countries maintain laws that criminalise people with HIV for donating blood. Notably, 15 jurisdictions in the United States (US) have laws which specifically criminalise blood donations by people living with HIV, while four US states – California, Illinois, Iowa, and Virginia – have repealed laws which previously criminalised this conduct.

Although prosecutions are relatively rare, we are aware of at least 20 cases relating to blood donation since 1987. Half of these cases have been reported in Singapore, including two as recently as 2021.

We argue that the criminalisation of blood donations by people with HIV is a disproportionate measure – even if the aim of protecting public health through the prevention of transfusion-transmitted infection is legitimate – and is the result of both HIV-related stigma and homophobia. It is not supported by science.

There is no good reason for any country or jurisdiction to have HIV-specific criminal laws – whether they focus on blood donation or on sexual exposure or transmission. HIV-specific criminal laws are discriminatory and stigmatising, especially since people with other serious blood borne infections – including hepatitis B and C and syphilis – are not singled out with specific laws, nor for prosecution under general criminal laws.

Blood donation criminal laws focused on HIV should be repealed, prosecutions based on general laws should end, and instead science-informed measures – such as individual donor risk assessments and universal blood screening – should be relied on to protect the public against transfusion-transmitted infection.

Read the report at: https://www.hivjustice.net/publication/badblood