The confidentiality of patient-doctor communications is a cornerstone of medical ethics and effective care, and rightly so — the information we divulge in the course of treatment is often highly sensitive, intimate, and revealing. We need patient privacy rules that are up to the task of protecting it. That’s why we recently sent a letter to the Department of Health and Human Services (HHS) opposing proposed modifications to the HIPAA Privacy Rule that would radically erode patient privacy protections and facilitate unnecessary disclosures of patients’ health information without their consent.

The touchstone of the HIPAA Privacy Rule is, and should be, patient consent. Never is this more important than when patients’ protected information risks being disclosed to law enforcement, the family regulation system (sometimes called the “child welfare system”), or other governmental actors. But the rule change HHS proposed in January of this year would disturb the Privacy Rule’s patient consent default and lead to a proliferation of disclosures to law enforcement and other problematic actors, bringing vulnerable patients into increased contact with systems that pose serious risks to their safety and health. And while the harms associated with lesser privacy protections implicate all of us, they will be borne most heavily by communities of color and people with disabilities. HHS must reject this outcome.

Here’s what that could look like for patients:

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One way HHS’s proposal undercuts privacy is by lowering the standard that governs when providers can share protected information without patients’ consent to address perceived threats of harm. Such a change is unsupported and would invite providers to err on the side of over-disclosure, especially in sensitive situations when patients’ privacy interests are at their height.

Because our society already relies on police to act as first-responders in an absurdly broad array of circumstances, one troubling likely consequence of this change is an increase in disclosures of patient information to law enforcement. HHS should avoid this. Encounters with police carry heightened perils for patients of color and those with disabilities. Indeed, half of all people killed by police have disabilities, including mental and other forms of disability. And police inflict violence on Black and Brown people at higher rates than white people. As the police killings of Daniel Prude, Walter Wallace Jr., and Deborah Danner (to name but a few) demonstrate, police are simply the wrong actors to intervene during mental health crises. The psychological and physical violence that result from police interventions should make HHS highly skeptical of proposals like this one. The HIPAA changes that HHS proposes would open the door to greater contact between vulnerable communities and law enforcement and thus impair individual and community health outcomes.

Weaker information-sharing standards under the Privacy Rule are also likely to lead to more involuntary hospital holds, which likewise disproportionately affect people of color and people with disabilities. Even where involuntary holds don’t result directly from police involvement, they are traumatizing. Patients experience involuntary holds as stigmatizing and disempowering, mirroring the harms of arrest and criminalization and failing to connect them with adequate follow-up care.

HHS’s proposed rules would also cut new channels for patients’ protected information to reach the family regulation system, even where no perceived emergency or threat of harm exists. For example, HHS would expressly allow healthcare providers to share more than the minimum information necessary for “care coordination and case-management” purposes, including with social service organizations and home- and community-based service providers. Health records will sometimes include documentation of trauma, mental health diagnoses, domestic violence, family adversity, current or past drug use, and so on. Passing that information along to social service providers — who often won’t be bound by HIPAA at all — might trigger invasive child protective investigations or keep families apart. It could also give housing providers or prospective employers grounds to deny benefits to vulnerable communities, as we cautioned in 2019.

As with police, contact with the family regulation system is inherently risky, exposing vulnerable communities to family separation, invasive governmental scrutiny, and other coercive interventions. Families describe — and studies document — the fear, distrust, anxiety, and stigma that result from family regulation system involvement. These harms again fall most heavily on Black, Indigenous, and low-income families, along with parents who have disabilities. Below, an example of how the Privacy Rule could exacerbate the family regulation system’s dire harms:

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Rather than widen the already expansive net of people with access to patients’ sensitive information, HHS should take care to limit lines of sight between systems of punishment and people seeking services and treatment.

In the limited circumstances where providers must share patients’ information without their approval, the Privacy Rule already provides plenty of flexibility. On the other hand, HHS largely ignores the significant harms of weakened patient privacy in its proposal. Indeed, the department offers little to justify its proposed changes at all, instead touting the benefits of reduced privacy protections for “efficient care coordination and case management” and referencing vague anecdotes about “confusion” under the current regulations.

HHS’ stated goal is to support people in accessing treatment — but this proposal would do the opposite by chilling patients’ access to needed care and exacerbating disparities along race, disability, and class lines. If the Biden administration truly prioritizes equity, as stated, then HHS must withdraw its proposed changes to the HIPAA Privacy Rule.

The cruelty of the U.S. Immigration and Customs Enforcement (ICE) agency was on full display this past year. The agency refused to take vital measures to curb the spread of COVID-19 in its detention centers, even in the face of its own experts’ findings that the crude facilities were “tinderboxes” for the disease.

Detained immigrants — compelled by the specter of illness and death in ICE’s jails — brought ICE to court over the inhuman conditions, with representation from the ACLU and its affiliates throughout California and around the country. Their actions led to findings that ICE was imprisoning medically vulnerable seniors in cramped, over-crowded cells; withholding COVID-19 tests to avoid having to deal with positive results; and retaliating against dissent by various means, including threatening to cut off access to soap.

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Judges ruled that the conditions in ICE facilities were “inconsistent with contemporary standards of human decency.” And they ordered ICE to let people go. (See our timeline.)

Before the ACLU’s lawsuits were filed, there were more than 42,000 people detained nationwide each day. At its lowest point during the pandemic, this number fell to just over 13,000 people detained nationwide each day. In California, there were more than 3,000 immigrants detained at the Adelanto, Mesa Verde, Yuba, Otay Mesa, and Imperial detention centers. Today, there are fewer than 1,000. And despite baseless outcries by government officials and the for-profit companies that operate the detention centers that drastically reducing the population of the centers would lead to havoc and widespread lawlessness, just the opposite happened.

Released immigrants, many of whom went home to their families, overwhelmingly complied with their court-ordered release conditions. Indeed, these releases offered a blueprint for a new future where instead of languishing in cruel, senseless detention, immigrants could retain their liberty and dignity while their immigration cases move forward.

Their stories are testament to the viability and urgency of a world without unjust immigrant detention. To cite three examples:

• Adrián Rodriguez Alcantara and his partner Yasmani Osorio Reyna are Cuban asylum seekers who first arrived in the U.S. in January 2020. The couple fled Cuba — where Adrián coordinated overseas medical mission trips and Yasmani worked at a radio and television agency — in search of the right to love each other freely. They were detained in the Otay Mesa Detention Center in San Diego for three months during the beginning of the pandemic while they waited for their asylum claims to be heard. As an individual with HIV, Adrián lived in constant stress and fear that he would contract COVID-19 and not make it out of Otay Mesa alive. Adrián and Yasmani were released on April 30, 2020, after filing a class action lawsuit seeking their release and the release of others in the facility. Their courage protected not only themselves, but nearly one hundred other medically vulnerable individuals whose releases were secured through the lawsuit.
• Sithy Bin was born in a Cambodian refugee camp and arrived in the U.S. as a toddler. Following the completion of 15 years on a 40-years-to-life sentence, after which a judge determined his exemplary conduct in prison had earned him a second chance, he was transferred to ICE custody at the Mesa Verde ICE Processing Facility in Bakersfield. There, he was closely confined with other men in his unit, none of whom received COVID-19 tests during his time in Since his release he has become a program administrator at Inglewood Wrapping Arms Around the Community, a nonprofit that offers community services and re-entry programs for marginalized people. He does social media work for a church ministry and attends Pacific Oaks College where he is pursuing a bachelor’s degree in human development.
• Alejandro Jeronimo Osorio, originally from Mexico, has lived in the U.S. for nearly 30 years. He has diabetes, hypertension, and asthma, conditions that put him at heightened risk of serious illness or death from COVID-19. He was released by court order in September 2020, with the judge finding that Alejandro, who had completed extensive rehabilitation programs following misdemeanor convictions, posed neither a danger nor a flight risk, and that his continued detention during the pandemic was likely unconstitutional. Two weeks after his release, Alejandro was granted custody of his three children, including a son who has a serious heart condition that recently required surgery. Alejandro was relieved he was able to be there to care for his son, as well as provide support for all his children.

Today, the Biden administration is faced with a choice. It can follow in the footsteps of the Trump administration and refill the now-empty jail cells. Or it can acknowledge what government studies have shown for years and what the experience of the past year has proven beyond doubt — that in the vast majority of cases, detention is not only cruel, but unnecessary to ensure immigrants’ presence at civil immigration proceedings. Humane, community-based alternatives to detention are more than capable of securing their presence while preserving individual liberty and dignity, and keeping families together.

So far, however, the signs from Washington are not good. Immigration detention numbers are rising, and the Biden administration persists in defending ICE’s cruelty in court. The government has yet to commit to protect people who were released due to COVID-19 from re-detention. It is not too late, but we need to act now.

Those of us who believe in a world without unjust immigrant detention must raise our voices and call on Department of Homeland Security Secretary Mayorkas to shut down ICE facilities immediately, before their cruelty wreaks havoc on yet another generation.