Addressing Stigma, Discrimination, and Disclosure in HIV
Uncovering HIV-related Stigma
<p>UNAIDS defines HIV-related stigma as “negative beliefs, feelings, and attitudes towards people living with HIV, groups associated with people living with HIV, and other key populations at higher risk of HIV infection, such as people who inject drugs, sex workers, men who have sex with men, and transgender people.”<sup>1</sup></p><p>Stigma spans many domains, including public, self, and structural spheres.<sup>3</sup> <i>Public stigma</i> refers to the negative attitudes and beliefs held by the public. <i>Self-stigma</i> is an internalization of negative beliefs about oneself. <i>Structural stigma</i> refers to community norms and institutional policies that can lead to prejudices and discrimination against certain groups of people.<sup>3</sup> To successfully address HIV-related stigma, a multifaceted approach targeting each of these domains is required. Healthcare providers can play a key role in these efforts.</p>
Testing Recommendations, Disclosure, and Criminalization
<p>In the United States, laws regarding HIV testing vary. Most states follow the Centers for Disease Control and Prevention (CDC) recommendation of voluntary routine screening in the healthcare setting, with consent to test inferred unless the patient asks to opt out.<sup>4</sup> Annual testing is recommended in high-risk patients and is mandatory in certain situations, such as blood and organ donation.<sup>4</sup></p><p>Once HIV is diagnosed, patients face the burden of disclosure. In addition to concerns about stigma and discrimination, most states have laws that criminalize certain behaviors by known HIV-positive individuals.<sup>5</sup> In some cases, even behaviors that pose low risk of transmission can be considered a criminal offense. Therefore, it is important for HIV-positive patients to be familiar with the laws in their state to avoid inadvertent criminal activity. In addition, evidence suggests that such laws, which have led to some high-profile legal cases, may deter testing, particularly in high-risk patients.<sup>6</sup> <i>Photo credit: CDC</i></p>
A Place for HIV Self-Testing
<p>Privacy issues and other concerns may cause patients to opt out of HIV testing despite wanting to know their HIV status, and testing rates in many countries have remained suboptimal.<sup>7</sup> HIV self-testing may be an important option for circumventing testing barriers, including in patients who should test regularly. These tests might also help shorten the interval between HIV transmission and diagnosis, improving outcomes through earlier treatment.<sup>8</sup></p> <p>Although HIV self-tests can be an important tool for improving diagnosis rates, they do not provide a definitive diagnosis and there is some concern about their efficacy, especially in early HIV infection.<sup>9</sup> These tests screen for the presence of HIV-1/2 antibodies or the HIV-1 p24 antigen in blood or saliva, which may not be detectable for 3 to 6 months following transmission.<sup>8</sup> In addition, positive screening results require confirmatory testing, which can lead to the same privacy concerns faced by patients being tested in the healthcare setting.<sup>8,9</sup></p>
Self-Testing Options in the United States
<p>In the United States, 2 self-testing options are available: the Home Access HIV-1 Test System and the OraQuick In-Home HIV Test.</p> <p>With the Home Access HIV-1 Test System, the user anonymously sends a blood sample collected via a finger prick to a specially licensed laboratory<sup>10</sup> and then calls the lab to obtain the results. The test has a sensitivity and specificity >99.9%. If the initial screening test indicates HIV positivity, confirmatory testing is automatically performed on the blood sample, negating the need for additional testing.<sup>10</sup></p> <p>With the OraQuick In-Home HIV Test, users collect oral fluid by swabbing their upper and lower gums and then inserting the swab into a vial containing a developer solution.<sup>11</sup> Results can be read in 20 to 40 minutes. The test has a sensitivity of 92%, which means 1 in 12 users may receive a false-negative result, and a specificity of 99.8%. A positive result requires confirmatory testing in the healthcare setting.<sup>11</sup></p>
Using EHRs to Optimize Care While Securing Privacy
<p>Use of electronic health records (EHRs), which is becoming increasingly common, can dramatically improve the care of patients with HIV.<sup>12</sup> Among other benefits, EHRs can help maintain a continuum of care, provide patients with access to vital health information, reduce the risk of errors inherent in paper reporting, and ensure patients keep up with their treatments. On the flip side, they raise privacy and discrimination concerns, particularly in the setting of sensitive health information.<sup>12</sup></p> <p>Strategies that have been recommended to improve confidentiality include (1) selection of an EHR system that complies with state privacy laws and HIPAA and HITECH requirements and has built-in safeguards, such as lockout after a specified period of inactivity; (2) controlled use of mobile devices containing EHRs; (3) proper training of staff and patients on EHR use; (4) confidentiality agreements with vendors; and (5) an understanding of where EHR data are stored during and after the contract period with the vendors.<sup>12,13</sup></p>
Recognizing Discrimination in the Healthcare Environment
<p>There are 3 important factors in the healthcare environment that can affect discrimination and, ultimately, disclosure: (1) whether staff make an effort to reduce stigma and discrimination associated with HIV; (2) the level of encouragement staff provide to promote HIV testing and disclosure, including partner and family referrals; and (3) the ability to provide or refer patients to proper counseling and offer support.<sup>14</sup> In healthcare environments, discrimination can take subtle and dangerous forms, including avoidance of treatment by healthcare practitioners, use of excessive precautions, and the release of sensitive information to third parties, rather than encouragement of voluntary disclosure. Each of these actions undermines the patient-provider relationship and can lead to suboptimal care and avoidance of care.<sup>14</sup></p>
Patient Factors Affecting HIV Disclosure
<p>Many patient factors can affect HIV disclosure, such as race/ethnicity, support resources in the community, and education and socioeconomic status (ie, patients with more education and higher incomes are more likely to disclose).<sup>14</sup> The recipient of the disclosure is another important consideration. Patients are more likely to disclose their HIV status to close family members than to friends or acquaintances.<sup>14</sup> Disclosing HIV status to partners is particularly challenging, with up to 20% of patients in some studies waiting a year or longer to reveal their diagnosis, indicating that such disclosures warrant special attention.<sup>14</sup> Married and pregnant women are reported to have greater difficulty than other groups with partner disclosure.<sup>14</sup></p> <p>Despite the difficulty in disclosing their HIV status, 66% to 75% of patients reveal their diagnosis to someone.<sup>14</sup> The process tends to be gradual, with the diagnosis revealed over time to an increasing number of people.<sup>14</sup></p>
<p>Although HIV disclosure raises concerns about stigmatization and discrimination, it has been viewed as a crucial step in prevention efforts and in ending stigma and discrimination by increasing understanding of the disease in the community, potentially providing patients with additional social support.<sup>14,15</sup> While disclosure remains difficult, negative reactions to disclosures have been reported to be relatively low, ranging from 3% to 15% of cases,<sup>14</sup> which may bring some comfort to patients. Individuals found to be struggling with disclosure may benefit from additional voluntary counseling services, a strategy reported to improve disclosure.<sup>15</sup></p> <p>In addition, structural changes, such as making more services available to HIV patients and training healthcare staff to recognize stigma and serve as patient advocates, could facilitate HIV disclosure as significantly as counseling.<sup>14</sup> Such strategies are especially important in patients who do not have a strong support network.<sup>14</sup></p>
Notifying High-Risk Partners
<p>A key challenge for healthcare providers is balancing patient confidentiality with ensuring the safety of at-risk partners.<sup>14,16</sup> Every effort should be made to help patients voluntarily provide this information to their at-risk sexual and/or needle-sharing partners.<sup>16</sup> Patients should also be reminded that failing to disclose this information to their partners could lead to criminal charges even if their state does not have HIV-specific laws.</p> <p>In the United States, healthcare providers and counselors may disclose a patient’s HIV status to at-risk partners without consent if the patient has received proper counseling and encouragement to voluntarily reveal this information but appears unlikely to do so, or if immediate disclosure is deemed necessary to protect the health of their partners.<sup>16</sup></p>
Resources for Partner Notification
<p>Partner notification can be especially difficult for HIV-positive patients, but they should understand that they do not have to notify their partners alone. Most states have partner counseling and referral services (PCRS), which offer notification support and provide testing and counseling resources for at-risk partners.</p> <p>Through PCRS programs, supported notification can occur in the following 3 ways: 1) Provider referral - the healthcare provider or counselor provides the notification; 2) Contract referral - a contract is drawn up stipulating that the at-risk partners come in for counseling and testing by a specific date or notification by the healthcare provider or counselor will ensue; 3) Dual referral - the patient and partner provide notification together.<sup>16</sup></p> <p>High-risk and HIV-positive patients should be made fully aware of the resources available to them. The CDC offers a list of such resources on its website.</p>
Understanding of the human immunodeficiency virus (HIV) has evolved considerably since the first case was reported in the early 1980s. Better preventive measures have reduced transmission risks, and treatment advances have enabled patients with the disease to live for decades; some patients reach close to a normal lifespan, particularly when HIV is diagnosed before there is a significant drop in CD4 count.1 While no longer considered a death sentence, especially in developed parts of the world where significant investments have been made in preventive measures and treatment resources, there is still considerable stigma attached to the diagnosis, which can have dire consequences.
Per the Joint United Nations Programme on HIV/AIDS (UNAIDS), "fear of stigma and discrimination, which can also be linked to fear of violence, discourages people living with HIV from disclosing their status even to family members and sexual partners and undermines their ability and willingness to access and adhere to treatment. Thus, stigma and discrimination weaken the ability of individuals and communities to protect themselves from HIV and to stay healthy if they are living with HIV."2
To combat the stigma associated with HIV/AIDS, UNAIDS advocates for healthcare programs and services that use a human rights-based approach.2 Adopting such systems and making healthcare practices a more comfortable environment for HIV-positive patients requires an understanding of some of the key challenges faced by these patients and the use of resources and strategies that can circumvent these barriers to optimal care.
- Marcus JL, Chao C, Leyden W, et al. Narrowing the gap in life expectancy for HIV+ compared with HIV- individuals. Abstract 54. Conference on Retroviruses and Opportunistic Infections (CROI). Boston, MA; February 22-25, 2016. Accessed January 29, 2017.
- UNAIDS. Reduction of HIV-related stigma and discrimination. Published 2014. Accessed January 29, 2017.
- Mahajan AP, Sayles JN, Patel VA, et al. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS (London, England). 2008;22(Suppl 2):S67-S79.
- Centers for Disease Control and Prevention. State HIV Testing Laws: Consent and Counseling Requirements. Updated March 18, 2015. Accessed January 30, 2017.
- Centers for Disease Control and Prevention. HIV-Specific Criminal Laws. Updated March 18, 2015. Accessed January 30, 2017.
- Lazzarini Z, Galletly CL, Mykhalovskiy E, et al. Criminalization of HIV transmission and exposure: research and policy agenda. Am J Pub Health. 2013;103:1350-1353.
- Kelvin EA, Cheruvillil S, Christian S, et al. Choice in HIV testing: the acceptability and anticipated use of a self-administered at-home oral HIV test among South Africans. Afr J AIDS Res. 2016;15:99-108.
- UNAIDS. A short technical update on self-testing for HIV. Published May 2014. Accessed January 30, 2017.
- Witzel TC, Rodger AJ. New initiatives to develop self-testing for HIV. Curr Opin Infect Dis. 2017;30:50-57.
- US Food & Drug Administration. Information regarding the Home Access HIV-1 Test System. Updated October 2, 2012. Accessed January 28, 2017.
- US Food & Drug Administration. Information regarding the OraQuick In-Home HIV Test. Updated June 18, 2014. Accessed January 28, 2017.
- Gray SH, Pasternak RH, Gooding HC, et al; Society for Adolescent Health and Medicine. Recommendations for electronic health record use for delivery of adolescent health care. J Adolesc Health. 2014;54:487-490.
- Neal D. Choosing an electronic health records system: professional liability considerations. Innov Clin Neurosci. 2011;8:43-45.
- Obermeyer CM, Baijal P, Pegurri E. Facilitating HIV disclosure across diverse settings: a review. Am J Public Health. 2011;101:1011-1023.
- Kadowa I, Nuwaha F. Factors influencing disclosure of HIV positive status in Mityana district of Uganda. African Health Sciences. 2009;9:26-33.
- AIDS.gov. Sexual partners. Revised August 24, 2009. Accessed January 30, 2017.
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