By: Jeffrey R. Lewis
There is a longstanding, inherent value in the assurance of privacy in our healthcare system. Among other things, it is the keystone of the physician-patient relationship (Holman, 2017); it improves treatment adherence (Heath, 2017); and it has been proven to promote better health outcomes (2013). An ambitious new initiative to combat HIV/AIDS in the United States, however, employs technology that places patients’ privacy protections at risk.
President Trump’s “
End the Epidemic by 2030” (EtE) initiative focuses on the 46 (out of 3,000) counties in the United States that account for more than half of new HIV infections. The Administration's plan also provides the opportunity to evaluate the ongoing rise in sexually transmitted diseases, which include worrying trends reported by the U.S. Centers for Disease Control and Prevention (CDC). Examples of the rise of STDs include a 19% increase in Chlamydia, 63% increase in Gonorrhea, and 71% increase in Syphilis (CDC, 2019).
It is through this initiative that HIV stakeholders are getting an important glimpse into a potentially useful, but troubling, new tool being used by our public health infrastructure – namely, molecular HIV surveillance.
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| Photo Source: CDC |
Molecular HIV surveillance involves data collection and sharing between healthcare practitioners and public health departments to track individual treatment resistance, as well as trends in HIV infections. It also leverages cluster detection to identify new infections of “people normally out of reach to public health” (McClelland, 2019). This information is shared with the CDC, which in turn uses the data to determine funding allocations for state and local health departments combating HIV (CDC, 2017). But at what cost to patients already living with HIV?
What’s troubling is that there is no informed consent by patients for data collected using individuals’ blood samples. State and local health departments report de-identified data to the CDC, but there are obvious patient privacy concerns.
Major health data breaches have become a problem in recent years. In 2016, patients enrolled in California’s AIDS Drug Assistance Program (“ADAP”) (Gorman, 2018); in 2017, patients served by CVS Pharmacy under Ohio’s ADAP (Hassan, 2018), and Aetna patients in Pennsylvania (Gordan, 2018), all had their privacy violated. It is not outside the realm of possibility that a data breach could also happen on a larger scale, exposing people living with HIV to further stigma.
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| Photo Source: Insurance Journal |
Although the CDC’s data collection is governed by federal guidelines which intend to protect the privacy of individuals, for those living in the shadows of the nation’s long, dark history of HIV-related stigma, these provide little comfort. The fact remains that negative attitudes toward HIV/AIDS persist.
According to the Kaiser Family Foundation, nearly one in five Americans are somewhat or very uncomfortable working with someone who is living with HIV. One in five Americans is also somewhat or very uncomfortable having a close friendship with someone who is living with HIV. And a staggering two out of five Americans report being somewhat or very uncomfortable sharing a living space with someone who is living with HIV (Kirzinger, 2019). These attitudes are from current data -
not from the early 1980s!
Because molecular HIV surveillance identifies where clusters of people living with HIV reside, there are concerns that it will further fuel HIV-related stigma, which is already high and continues to grow. Worse, patient advocacy groups and legal scholars fear the potential exists for more unfair criminal prosecutions under outdated state HIV criminalization laws that allow prosecution of those who fail to disclose their HIV status.
The CDC has defended the use of this strategy, claiming it is “important to identify growing clusters of recent and rapid transmission to intervene to interrupt transmission” (Oster, 2017). According to their data through December 2015, such clusters have surfaced in each region of the United States, with 1,923 clusters identified, ranging in size from 2-22 cases (Oster, 2017).
Some of these clusters have gained national attention, namely ones in Scott County, Indiana, and San Antonio, Texas. The former resulted in more than 200 diagnoses of new HIV infections, whereas the latter helped to identify a cluster of 24 Latino gay and bisexual men (O’Neill Institute, 2019). What is often overlooked in the discussion over both of these clusters is whether and how syringe exchange programs could have effectively prevented many new infections.
To fully understand why public identification of these clusters is problematic, one must view the current situation in the context of its potential legal implications. Draconian HIV-specific criminalization laws still exist in 34 states; another 24 states have used general criminal statutes against people living with HIV for “HIV exposure” or non-disclosure of HIV status (CHLP, 2019). These laws relegate people living with HIV to second-class citizenship for numerous reasons. According to the Center for HIV Law and Policy, state HIV criminalization laws “
criminalize non-disclosure of HIV status or exposure of a third party to HIV; make exceptions to confidentiality and privacy rights of people living with HIV; provide for sentence enhancements for people living with HIV convicted of underlying crimes such as prostitution and solicitation; and require sex offender registration for people living with HIV” (CHLP, 2019).
Lambda Legal, considered the leading advocacy organization for the LGBTQ community, takes it a step further in characterizing the harm done by state HIV criminalization laws, speculating that these laws harm public health by creating disincentives for people to get tested for HIV and prevent others who are HIV-positive from seeking care and treatment. Lambda argues that “information from healthcare providers is often used to prosecute,” which undermines the keystone of the physician-patient relationship (Lambda Legal, 2013).
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| Photo Source: SERO |
It isn’t hard to imagine a worst-case scenario in which molecular HIV surveillance data makes its way into a courtroom and contributes to the “unjust prosecutions” (Lambda Legal, 2013), or into the court of public opinion to “stigmatize and oppress” people living with HIV (Lambda Legal, 2013). While molecular HIV surveillance alone cannot be used in court to establish HIV transmission (Schneider, 2019), it can be used as evidence, and that alone should cause considerable concern.
People living with HIV see very little difference between molecular HIV surveillance as an effective “tool” fighting the epidemic and HIV criminalization. They see it more as a weapon aimed at further isolating, stigmatizing, and punishing people living with HIV. We should be listening to them rather than trying to reassure them.
In our quest to eradicate HIV/AIDS in the United States (and across the globe), it is important to keep the ongoing struggle in perspective. As we pursue new approaches toward ending the epidemic – including leveraging new technologies that can pinpoint HIV clusters and link more people to care – we must not become over-zealous and ignore the very real concerns expressed over molecular HIV surveillance by our family, friends, colleagues, neighbors, and even strangers living with HIV.
HIV-positive people should be afforded the very
same privacy protections as their HIV-negative counterparts. That is what this community expect, deserves, and should be guaranteed.
Editor's Note: Mr. Lewis has worked on issues impacting the HIV/AIDS community for many years. The views expressed our his own. He can be reached at
jeffreyrobertlewis@gmail.com.
References:
- Centers for Disease Control & Prevention (2017). Surveillance Overview. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/hiv/statistics/surveillance/index.html.
- Centers for Disease Control & Prevention (2019). Sexually Transmitted Disease Surveillance 2018. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/std/stats18/default.htm.
- Center for HIV Law and Policy (March 2019). HIV Criminalization in the United States: A Sourcebook on State and Federal HIV Criminal Law and Practice (Third Edition). Retrieved online at http://www.hivlawandpolicy.org/sourcebook.
- Eustace-McMillan, Loni (1999, December 17). Protecting Private Medical Information: Liability for Unauthorized Disclosure. University of Houston Law Center. Retrieved online at https://www.law.uh.edu/healthlaw/perspectives/Privacy/991217Protecting.html.
- Gorman, Anna (2018, April 6). Former California State Contractor Sued Over Breach Of HIV Patient Privacy. California Healthline. Retrieved online at https://californiahealthline.org/news/former-california-state-contractor-sued-over-breach-of-hiv-patient-privacy/.
- Gordon, Elena (2018, January 17). Aetna Agrees To Pay $17 Million In HIV Privacy Breach. NPR. Retrieved online at https://www.npr.org/sections/health-shots/2018/01/17/572312972/aetna-agrees-to-pay-17-million-in-hiv-privacy-breach.
- Hassan, Carma (2018, April 1). Lawsuit claims CVS unintentionally revealed HIV status of 6,000 customers. CNN. Retrieved online at https://www.cnn.com/2018/04/01/health/cvs-lawsuit-hiv-status-customers/index.html.
- Heath, Sara (2017, August 22). 5 Ways to Improve Medication Adherence in Chronic Care Patients; Providers need to uncover the patient barriers to help improve medication adherence in chronically sick patients. Patient Engagement Hit. Retrieved online at https://patientengagementhit.com/news/5-ways-to-improve-medication-adherence-in-chronic-care-patients.
- Holman, Tayla (2017, June 27). How to Build Patient Trust to Improve the Doctor-Patient Relationship. Dignity Health. Retrieved online at https://www.dignityhealth.org/articles/how-to-build-patient-trust-to-improve-the-doctor-patient-relationship.
- Kempner, Martha (2019, March 4). New Study Triggers Concerns Over Use of Molecular HIV Surveillance. TheBodyPro. Retrieved online at https://www.thebodypro.com/article/concerns-over-use-of-molecular-hiv-surveillance.
- Kirzinger, Ashley, Lunna Lopes, Bryan Wu, and Mollyann Brodie (2019, March 26). KFF Health Tracking Poll – March 2019: Public Opinion on the Domestic HIV Epidemic, Affordable Care Act, and Medicare-for-all. Kaiser Family Foundation. Retrieved online at https://www.kff.org/health-reform/poll-finding/kff-health-tracking-poll-march-2019/.
- Lambda Legal (2013, December 13). 15 Ways HIV Criminalization Laws Harm Us All. Retrieved online at https://www.lambdalegal.org/publications/15-ways-hiv-criminalization-laws-harm-us-all.
- Macsata, Brandon M. (2019, May 2) The ADAP Blog. When State & Local Public Health "Policies" Fuel HIV Stigma. ADAP Advocacy Association. Retrieved online at https://adapadvocacyassociation.blogspot.com/2019/05/when-state-local-public-health-policies.html.
- McClelland, Alexander, Adrian Gula, and Marilou Gagnon (2019, February 10). The rise of molecular HIV surveillance: implications on consent and criminalization. Critical Public Health. Retrieved online at https://www.tandfonline.com/doi/citedby/10.1080/09581596.2019.1582755?scroll=top&needAccess=true.
- Mesika, Robert (2012, July). The Ethics of HIV Criminalization. ETHICAL INQUIRY: JULY 2012. International Center for Ethics, Justice and Public Life. Retrieved online at https://www.brandeis.edu/ethics/ethicalinquiry/2012/July.html.
- O’Neill Institute for National & Global Health Law (2019, Augsut). Quick Take: Using Cluster Detection to End the HIV Epidemic. Georgetown Law. Retrieved online at https://oneill.law.georgetown.edu/wp-content/uploads/Quick-Take_HIV-Cluster-Detection_August-2019.pdf.
- Oster, M.D., Alexa, et. al. (2017, March 24). National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. Use of molecular surveillance data to identify clusters of recent and rapid HIV transmission. U.S. Centers for Disease Control & Prevention. Retrieved online at https://www.seaetc.com/wp-content/uploads/2017/01/Use-of-Molecular-Surveillance-Data-to-Identify-Alexandra-Oster.pdf.
- Schneider, Jacon (2019, September 12). Is HIV Molecular Surveillance Worth The Risk? The Center for HIV Law & Policy. Retrieved online at http://www.hivlawandpolicy.org/fine-print-blog/hiv-molecular-surveillance-worth-risk.
- Serenko*, Natalia, and Lida Fan (2013). Patients’ perceptions of privacy and their outcomes in healthcare. Int. J. Behavioural and Healthcare Research, Vol. 4, No. 2. Retrieved online at http://aserenko.com/IJBHR_Serenko_Fan.pdf.
Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.
