May 6, 2021
U.S. Department of Health and Human Services, Office for Civil Rights
Hubert H. Humphrey Building, Room 509F
200 Independence Avenue SW
Washington, DC 20201
Attention: Proposed Modifications to the HIPAA Privacy Rule to Support, and Remove Barriers to, Coordinated Care and Individual Engagement NPRM, RIN 0945-AA00
I. Introduction
The Law Foundation of Silicon Valley opposes the U.S. Department of Health and Human Services (“HHS”) Proposed Modifications to the HIPAA Privacy Rule to Support, and Remove Barriers to, Coordinated Care and Individual Engagement NPRM, RIN 0945-AA00 which would change the disclosure standard from “serious and imminent” to “serious and reasonably foreseeable,” (hereafter “Proposed Rule”). The Proposed Rule would create too much room for bias and lead to increased policing and incarceration of people who are Black, transgender, and people with disabilities such as HIV and mental illness. At a time when our country is reexamining the outsized and dangerous role that police have played in responding to people experiencing mental health crises, loosening the standard for disclosing private health information to law enforcement is a turn in the wrong direction.
The Law Foundation of Silicon Valley is a legal services non-profit that advances the rights of under-represented individuals and families through legal services, strategic advocacy, and educational outreach. Our Health Program serves communities who are historically excluded from health systems including Black, Indigenous, Latinx, AAPI, other people of color, LGBTQIA individuals and people experiencing homelessness with a focus on individuals who identify as having mental health or developmental disabilities and/or individuals who live with HIV or AIDS.
The Health Program incorporates community and movement lawyering along with grassroots advocacy to help our clients based on our direct legal services work. This includes recognizing that many systems play a role in health equity and social determinants of health, including jails and prisons, law enforcement, and systems that impact the likelihood that a person experiences health inequity. We believe that our legal and policy advocacy should support and advance health equity for all. HHS’s Proposed Rule would jeopardize our clients’ safety and well-being. We oppose it for the reasons stated below.
II. The Proposed Rule Places Public Health Issues in The Hands of Police Instead of Healthcare Providers, Endangering People with Disabilities.
Law Foundation believes that law enforcement has no role in addressing public health issues. We fear that the proposed loosening of the standard for disclosing health information to law enforcement will have harmful effects on people with disabilities, particularly Black, Indigenous, and other people of color (“BIPOC”). This harm will likely heighten BIPOC communities’ distrust of healthcare systems and cause more dangerous law enforcement encounters.
We are concerned that the Proposed Rule contravenes President Biden’s directive that federal agencies “assess . . . systemic barriers” including “[w]hether new policies, regulations, or guidance documents may be necessary to advance [race] equity in agency actions and programs,” because this change would have a disparate impact on Black, Indigenous, and other people of color (“BIPOC”).1 The United States’ history of racism and ableism contributes to over-policing people of color with disabilities. Policing in the United States was originally created to recapture enslaved people and enforce Black Codes.2 In the past, ableist laws, such as “ugly laws,” which outlawed people “deemed ‘diseased, maimed, mutilated, and any way deformed, so as to be an unsightly or disgusting object’” from appearing in public, made people with disabilities more subject to criminal punishment.3 As the United States has deinstitutionalized people with disabilities they continue to be disproportionately policed and incarcerated.4 This is particularly true of people with disabilities who are Black. For example, “more than half of disabled African Americans have been arrested by the time they turn 28—double the risk in comparison to their white disabled counterparts.”5 If medical professionals are provided a lower standard for reporting private health information to law enforcement, many likely will allow more of their own biases to influence their decisions, increasing these unjust outcomes. Contrary to President Biden’s order, HHS’s proposed HIPAA changes will increase inequity.6
Encouraging health care providers to disclose information about their patients to police is likely to endanger their lives, particularly if they are BIPOC. Studies show that roughly “one-third to one-half of total police killings” are of “people with disabilities, or who are experiencing episodes of mental illness.”7 Police officers’ “failure[s] to consider someone’s disability can lead to escalation or the use of excessive force . . . [and] in many cases leads them to respond with inappropriate tactics,” and sometimes murder.8 [R]esearch indicates that individuals with psychiatric disabilities are sixteen times more likely to be killed by law enforcement during a police encounter.”9 The risk of being the victim of “police violence increases as disability intersects with race, class, gender, and LGBTQ+ status.”10 To reduce police killings and enhance community safety, the Law Foundation supports redirecting funds from law enforcement to health care and housing services in response to people with disabilities’ needs. 11
a. Loosening the Standard for Sharing Protected Health Information with Law Enforcement Will Lead to Increased Criminalization of People with Mental Health Disabilities.
Loosening the standard for disclosing public protected health information to law enforcement will thrust police back into mental health issues where they do not belong. The slacker standard will impel police to intervene even when no crime was committed and only medical treatment would avert potential future harm. Police will have too much discretion to act on stigma and racial animus.
HHS’s proposal to replace “serious and imminent threat” with “a serious and reasonably foreseeable threat,” substantially lowers the threshold for disclosure to encompass more remote and speculative harms. HHS states it seeks to clarify the rule to prevent situations in which a covered entity declines to disclose protected health information because it cannot determine whether the threat qualifies as imminent, and/or to give others time to mitigate the threat. The change in the rule from “imminent” to “reasonably foreseeable” changes more than the timeframe in which a covered entity can disclose protected health information. An imminent event is impending temporally and nearly certain to occur. The Proposed Rule substantially lowers the threshold of disclosure to speculative instances in which the threatened harm might occur.
The Proposed Rule shifts the responsibility of addressing patients’ mental health crises that could result in harm to oneself or others from mental health professionals who could civilly commit and treat them to the police.12 This will be true even where no criminal act has occurred. The proposed rule envisions that the police will “do something” in the gap between the fear of harm and the actual commission of a crime. How police respond to reports of pre-crime when a covered entity discloses that a serious harm might occur will be up to their discretion. Racism and ableism are common within society and the police force and will lead police to abuse their discretion.
Police discretion frequently leads to arrests for pretextual reasons. In police interactions, a pretextual stops are often when law enforcement interrogates or investigates a person based on a separate and unrelated suspected criminal offense. When the police’s perception of the predicted threat flows from the subject’s mental illness, this leads to criminalizing disabilities. Studies have shown for decades that a suspect who is mentally ill is more likely to be arrested than those who are not.13 The problem compounds when issues of intersectionality, like race, or gender non-conformance are introduced. Racial minorities continue to be subject to racist and disproportionate rates of arrest.14 Increasing the likelihood that health care providers will contact law enforcement will lead to greater criminalization of people with disabilities, particularly those of color.
HHS should not enact the Proposed Rule. It has other avenues available to it to address the deficiencies it identifies in the current rule, including defining “imminent” as a more finite point in time, and providing presumptions or immunities for mental health care provider’s good faith belief that a harm is imminent.
b. Broadening the Standard for Disclosing Protected Health Information to Law Enforcement Will have a Disparate Impact on People with Sexually Transmitted and Other Communicable Diseases, Likely Leading to Worse Health Outcomes, Particularly for Those of Color.
Loosening the protected health information disclosure standards will lead to increased criminalization and worse health outcomes for people with HIV and other sexually transmitted diseases (STDs). “As of 2020, 37 states have laws that criminalize HIV exposure” including laws that “criminalize or control behaviors that can potentially expose another person to STDs/communicable/infectious disease.”15 Some of these laws include increasing the “sentence length when a person with HIV commits certain crimes.”16 HIV can also be used as a factor in sex offender classification in many states.17 “[M]any of these state laws criminalize behaviors that the [Center for Disease Control] regards as posing either no or negligible risk for HIV transmission even in the absence of risk reduction measures.”18 Such HIV stigma is a barrier to testing, and prevention, which causes the disease to spread.19 Knowing that your health care provider could report you to law enforcement after getting diagnosed with a transmissible disease because it is “reasonably foreseeable” that you could expose others to a serious contagious disease may hamper people’s willingness to get diagnosed or treated for these conditions. Not only will this cause dangerous outcomes for their own health but will deter efforts to contain the spread of these diseases.
Allowing providers broader leeway regarding when to disclose protected health information to law enforcement will particularly harm Black, Latinx, and Indigenous communities who not only face disproportionate policing, but also disproportionate rates of HIV and other contagious diseases. Based on our medical system’s racist legacy, these communities already have higher rates of distrust in the medical system.20 Loosening the standards for disclosing protected health information may augment their misgivings as it allows individual bias to influence when providers alert law enforcement. As a result, fewer Black, Latinx, and Indigenous people with communicable diseases may seek diagnosis or treatment.
c. Broadening the Standard for Disclosing Protected Health Information to Law Enforcement Will Disparately Impact Mental Health Consumers Due to Stigma
HHS’s examples and comments on the Proposed Rule make clear a primary and intended target of the Proposed Rule is mental health consumers. 21 Mental health consumers will bear the brunt of breaches to their privacy because of pervasive, false stigma that they are inherently violent due to their mental illness. Stigma will be both a driver of law enforcement involvement and consequence discouraging treatment.
Stigma against individuals with mental health disabilities has greatly increased over the past several decades.22 Stigma in the media is unrelenting and associates people who are mentally ill with violence, including the types of mass violence that HHS names: mass shootings, use of explosive devices to attack crowds, or other acts of terrorism.23 When an episode of mass violence occurs, the media’s first question is whether the perpetrator was mentally ill. However, most mass violence is caused by people who do not have mental illness. In an extensive review of 14,785 murders worldwide between 1900 and 2019, mental illness was not present in mass shootings event 92% of the time and was not present in other modes of mass violence 89% of the time.24 Therefore, the assumption that law enforcement should be contacted related to a patients’ mental health symptoms is not rooted in fact.
Loosening the standard for disclosing protected health information to law enforcement will increase stigma and cause mental health consumers to hide their illness increasing the threat to public safety in those rare instances where a mental health issue presents a threat to public safety. Stigma remains one of the greatest barriers to mental health treatment.25
III. Conclusion
Our Country is presently involved in a deep debate about the role of policing in our society. For racial minorities and those with disabilities the evidence is clear that encounters with police often end in unjustified death. These communities are targets of over policing. HHS’s Proposed Rule would make that worse.
The culture of policing cannot be reformed. The urgent need to protect life and bring about a more just society requires that we reduce the role of police and reimagine public safety. We urge HHS not to enact the Proposed Rule which takes us backward. Instead we urge HHS to engage with activists and thinkers who are doing the necessary work of reconceptualizing what truly keeps us safe.
Thank you for your consideration of these comments.
Sincerely,
Becky Moskowitz, Supervising Attorney - Economic Rights Unit, Health Program
Clare Cortright, Staff Attorney, Health Program
Abre’ Conner, Directing Attorney, Health Program
Citations
1. See Sec. 5 (c) of the January 20, 2021 “Executive Order on Advancing Racial Equity and Support for Underserved Communities Through the Federal Government”.
2. Connie Hassett-Walker, “How You Start is How You Finish? The Slave Patrol and Jim Crow Origins of Policing,” American Bar Association (January 12, 2021), https://www.americanbar.org/groups/crsj/publications/human_rights_magazine_home/civil-rights-reimaginingpolicing/how-you-start-is-how-you-finish/.
3. Vilissa Thompson, “Understanding the Policing of Black, Disabled Bodies,” Center for American Progress, (February 10, 2021), https://www.americanprogress.org/issues/disability/news/2021/02/10/495668/understandingpolicing-black-disabled-bodies/.
4. Id.
5. Id.
6. See Sec. 5 (c) of the January 20, 2021 “Executive Order on Advancing Racial Equity and Support for Underserved Communities Through the Federal Government”.
7. Abigail Abrams, “Black Disabled and at Risk: The Overlooked Problem of Police Violence Against Americans with Disabilities,” Time (June 25, 2020), https://time.com/5857438/police-violence-black-disabled/.
8. Supra note 3. For example, police often react with force when people with disabilities are unable to respond in the way that conforms with their expectations. Supra note 7. Law enforcement is not accustomed to think about whether the person’s disability such as hearing loss or hallucinations interfere with their ability to comply with instructions and instead will often respond with violence, particularly if the individual is BIPOC.
9. Disability Rights Ohio, “Policing and Racial Injustice: A Disability Rights Perspective: Impacts and Solutions,” page 3.
10. Id.
11. Id. at 6.
12. Every state has civil commitment laws that allow a person to be detained for evaluation and treatment if they pose a risk of danger to themselves or others. (See https://www.treatmentadvocacycenter.org/grading-the-states).
13. Linda A. Teplin, “Keeping the Peace: Police Discretion and Mentally Ill Persons,” National Institute of Justice Journal (July 2000), p. 12 https://www.ojp.gov/pdffiles1/jr000244c.pdf.
14. Radley Balko, “There’s overwhelming evidence that the criminal justice system is racist. Here’s the proof,” Washington Post, (June 10, 2020), https://www.washingtonpost.com/graphics/2020/opinions/systemic-racismpolice-evidence-criminal-justice-system/.
15. Centers for Disease Control and Prevention, “HIV and STD Criminalization Laws” (accessed May 5, 2021), https://www.cdc.gov/hiv/policies/law/states/exposure.html.
16. Id.
17. The Center for HIV Law and Policy, “HIV Criminalization in the United States,” Third Edition, p. 5; https://www.hivlawandpolicy.org/sites/default/files/HIV%20Criminalization%20in%20the%20U.S.%20A%20Sourcebook%20on%20State%20Fed%20HIV%20Criminal%20Law%20and%20Practice%20050520.pdf.
18. U.S. Department of Justice Civil Rights Division, “Best Practices Guide to Reform HIV-Specific Criminal Laws to Align with Scientifically-Supported Factors,” p.1, https://www.hivlawandpolicy.org/sites/default/files/DOj-HIVCriminal-Law-Best-Practices-Guide.pdf.
19. J. Stan Lehman, et. al, “Prevalence and Public Health Implications of State Laws that Criminalize Potential HIV Exposure in the United States”, AIDS Behav (2014), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4019819/.
20. Katrina Armstrong, “Racial/Ethnic Differences in Physician Distrust in the United States,” Am J Public Health. (July 2007), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1913079/. See also NPR Morning Edition, “Native Americans Feel Invisible in U.S. Health Care System,” (December 12, 2017), https://www.npr.org/sections/healthshots/2017/12/12/569910574/native-americans-feel-invisible-in-u-s-health-care-system.
21. HHS’s commentary gives examples of intended uses of the rule including suicidal persons. It also gives a special presumption to mental health providers, for instance, when they engage in assessing patients for dangerousness.
22. Treatment Advocacy Center, “Stigma and Serious Mental Illness,” (June 2016), https://www.treatmentadvocacycenter.org/evidence-and-research/learn-more-about/3631.
23. Emma E. McGinty, et. al. “Trends in News Media Coverage of Mental Illness in the United States: 1995-2014,” Health Affairs, (June 2016), https://www.healthaffairs.org/doi/10.1377/hlthaff.2016.0011.
24. Columbia University Department of Psychiatry, “Researchers Issue First Report of Mass Shootings form the Columbia Mass Murder Database,” (February 18, 2021), https://www.columbiapsychiatry.org/news/researchersissue-first-report-mass-shootings-columbia-mass-murder-database.
25. Stephanie Knack, et. al, “Mental illness-related stigma in healthcare: Barriers to access and care and evidence-based solutions,” Healthcare Management Forum, (2017), https://www.mentalhealthcommission.ca/sites/default/files/2017-03/MI%20stigma%20in%20healthcare_barriers%20to%20access%20and%20evidence%20based%20solutions.pdf.
