HIV Disclosure for Prevention of Mother to Child Transmission of HIV

For almost two years now, the world was pre-occupied with responding to the COVID-19 pandemic.  We take a look at another pandemic, just as important, as it affects us here in the Philippines – the HIV/AIDS epidemic.  As of August 2021, the HIV/AIDS & ART Registry of the Philippines reported 90,031 confirmed HIV-positive cases since January 1984.

 

An HIV diagnosis will change your life.  Living with HIV can increase the risk of stress, anxiety, and depression.  The most frequent stressors experienced by PLHIV at diagnosis were confidentiality (93.2%), risk of infecting others (86.9%), distressing emotions (86.3%), physical functions (83.9%), and disclosure concerns (83.7%) (Huang, 2020).

What is HIV Disclosure?

 

HIV DISCLOSURE is the personal experience of communicating to another individual or group of individuals that you are a person living with HIV.  HIV disclosure is central to debates on HIV because of its potential for HIV prevention on the one hand, and privacy and confidentiality as human rights issues on the other (Obermeyer CM, 2011).  Disclosure of HIV status is an essential part of behavior modification and access and adherence to treatment in people infected with HIV (Norman MA, 2007)

 

Unfortunately, existing HIV disclosure laws in the US seem to contradict rather than complement public health efforts to prevent the spread of HIV (CL Galletly, 2006).  By singling out persons who have HIV in a criminal statute and by criminalizing sexual behavior that would be legal for HIV-negative or untested persons, these laws link HIV-positive status with criminality, potentially reinforcing the stigmatizing attitudes that public health leaders identify as significant barriers to prevention efforts. 

 

The public health response to HIV/AIDS is founded on the following key recommendations.  

1. practice safer sex correctly, consistently and universally
2. seek testing and take steps to eliminate or modify behaviors that put them at risk
3. HIV-positive persons are encouraged to seek treatment, to apprise past sexual partners that they may have been exposed to the virus, and to avoid behaviors that would put future partners at risk.

We are fortunate in the Philippines to have the Republic Act 11166 or the HIV AIDS Policy Act of 2018, which provides the following:

• Extended scope of HIV education and information, which shall form part of the constitutional right to health
• Evidence-based, gender-responsive, age-appropriate and human rights-oriented prevention programs and measures.  Goals are to reduce risky behavior, lower vulnerabilities, and promote human rights of PLHIVs
• Testing and counseling made accessible to the young population – voluntary, confidential, available all the time with informed consent, extended to persons aged 15 or over, child below 15 who are at higher risk of HIV exposure any young person aged below 15 who is pregnant or engages in high risk behavior

In fact, there are stricter penalties for violation of confidentiality, a comprehensive treatment, care and support program for PLHIVs and higher penalties for discrimination based on HIV status

This translates to better access, better education, better care and better partnerships.

 

DISCLOSURE AMONG HETEROSEXUAL ADULT PLHIV

 

In 2008, Arnold et al researched on disclosure among heterosexual adult persons living with HIV in different relational contexts: with partners, family members, friends, healthcare professionals and in work settings (Arnold M, 2008).

 

Disclosure is higher among women than men, among Latinos and whites compared to African-American families, and among younger compared to older HIV-positive adults.

Disclosure decisions are often made to tell everyone, someone or no one. (Arnold M, 2008)

• EVERYONE - Makes HIV status a central attribute of one’s identity
• SOMEONE – Requires strategic decisions based on context
• NO ONE – requires strategies for securing social support while remaining anonymous

Disclosure decisions are central to personal identity.  Disclosure is intimately related to how communities stigmatize or accept PLHIV and how individuals perceive themselves, their identities and their roles in the communities

 

DISCLOSURE AND TYPES OF SOCIAL RELATIONSHIPS

 

Here are some tough questions on Disclosure of HIV+ Serostatus

 

•      If an individual is HIV+, is it their responsibility to disclose to their sex partner?

•      In your opinion, how or when should a person living with the virus disclose their HIV+ serostatus to potential sex partners?

•      How likely are people to disclose their HIV+ serostatus to casual sex partners?

•      If someone is having unsafe sex, how likely are they to disclose their HIV+ serostatus?

•      Of those who do not disclose to all partners, how do you think they make the decision regarding who to tell and who not to tell?

•      How truthful are people (or do you think they lie) in telling their HIV+ serostatus when they have intimate contact (sex, needle sharing) with others and why?

•      In your opinion, what is the best method to encourage disclosing a person’s HIV+ serostatus with current and potential sex partners?

•      What are your thoughts and feelings regarding disclosing to persons other than sex partners?

  

Model on HIV Disclosure and Types of Social Relationships

Social relationships were categorized as sexual and nonsexual, with varying degrees of HIV disclosure, depending on the social relationship with the person to whom one did or did not disclose.

·   HIV is still a fearful and stigmatizing disease, and disclosure of HIV status is a complex phenomenon embedded in various types of social relationships. (Bairan, 2007)

·  Disclosure of one’s HIV+ serostatus depends on (1) social relationships (2) fear, and (3) stigma, with social relationships being the predominant theme

·  Social relationships - Concerning sexual relationships, some participants defined nondisclosure of HIV+ status to casual sex partners as ‘‘anonymous sex.’’  Being a gay man, I have relations with people that I don’t e.ven know. I don’t want to know your name. So I don’t tell them [disclose] right off the bat. And if I don’t say that [I’m HIV+], well now, the sentence is 10 years in jail.’ if you don’t expect to see them again, you wouldn’t disclose. The main reason given for not disclosing was that the HIV+ person wanted sex.  A subject shared that he would not tell a casual sex partner but would tell his partner if he was in a long-term relationship.  Most people, when they find out that they are HIV+, go through a period that they DON‘T disclose.  It’s different with every person.

 

DISCLOSURE AND HAART

  

Is disclosure associated with HAART adherence?

 

Four groups of factors have been associated with adherence to highly active anti-retroviral therapy: (1) patient factors; (2) medication characteristics; (3) interpersonal characteristics (e.g. social supports); and (4) the general health care system.  The relationships between decisions about disclosing and about starting and adhering to highly active antiretroviral treatment (HAART).  Does disclosure always facilitate adherence? Does adherence facilitate disclosure? Many advocates have hoped that improved treatment would lessen the stigma associated with HIV and ease the lives of PLWH.

 

Medications may ‘out’ people living with HIV.  Disclosure of HIV and/or HAART may also result in antagonism from others who hold negative attitudes and beliefs about HAART, potentially impeding adherence.  Conversely, medications may improve appearance, delaying or impeding disclosure.  HIV disclosure can lead to support that facilitates initiation of, and adherence to, treatment. HIV disclosure and adherence can shape one another in critical ways (Klitzman, 2004)

 

 

PARENTS DISCLOSURE OF HIV TO THEIR CHILDREN

Parents were more likely to disclose to older than younger children.  Mothers were more likely to disclose earlier than fathers and they disclosed more often to their daughter than to their sons (Lee, 2002).

Disclosures impact adolescents negatively.  Healthcare workers need to discover how to reduce this impact.  Clinical literature suggests that family secrets are destructive.  The negative impacts of disclosure on both parents and their adolescent children persist for a considerable period of time. Parents who disclose report significantly more stressful life events, family stressors, and perceive that their children experience HIV-related stigma.

As the quality and duration of life for PLH has increased, there appears to be less urgency to disclose one’s serostatus to children.  The medical setting offers a venue for providing support regarding decisions about whether, when and how to disclose their serostatus to their children.

If parents are discouraged from disclosing, an implicit message is communicated that HIV is stigmatizing and must be hidden. We are not advocating hiding one’s status.  Yet, we need to understand that disclosure takes courage, planning and a lot of time in a long process to reduce negative impact of disclosure on both the parent and adolescent.

Healthcare workers must take care to avoid involuntary or unplanned disclosures.  More efficient process flows must be developed during testing, linking to care, contact tracing, immigration, in dealing with legal cases and managing accidents and gossips.

It is important to know the stages of adapting to life with HIV, which goes thru each step of the process, including: shock, denial, anger, bargaining and depression.  This allows healthcare workers to adjust, provide support and assist the PLHIV in disclosing their HIV status to prevent transmission and access care.

The disclosure process would vary from person to person and their tolerance for coming out.  Considering the possible negative impact of HIV disclosure, the process involves recover and support, education, preparation, planning, disclosure and the follow up after the disclosure.

More attention should be paid to PLWH with younger age, not living alone, less income, presence of HIV symptoms, and lack of social support (Huang, 2020).  Disclosure is believed to affect health, mental health, disease transmission and the quality of relationships; the importance of disclosure behavior will only increase as treatments and life expectancies improve.

  

I remember one young man who mustered enough courage to disclose his HIV status to his strict parents.  In the process, he had to reveal the fact that he was gay as well.  When his parents failed to accept him as their child, the young man fell into deep depression and committed suicide.  

The bottomline is that role of disclosure for HIV prevention should be balanced against the person’s privacy and confidentiality as human rights issues.

 

 

References

Arnold M, E. R.-B. (2008). HIV Disclosure among adults living with HIV. AIDS Care, 80-92.

Bairan, A. (2007). A model of HIV disclosure: Disclosure and types of social relationships. Journal of the American Academy of Nurse Practitioners, 19, 242-250. doi:https://doi.org/10.1111/j.1745-7599.2007.00221.x

CL Galletly, S. P. (2006). Conflicting Messages: How Criminal HIV Disclosure Laws Undermine Public Health Efforts to Control the Spread of HIV. AIDS Behav, 10, 451–461. doi:DOI 10.1007/s10461-006-9117-3

Huang, Y. (2020). HIV-Related Stress Experienced by Newly Diagnosed People Living with HIV in China: A 1-Year Longitudinal Study. Int. J. Environ. Res. Public Health, 17, 2681. doi:doi:10.3390/ijerph17082681

Klitzman, R. (2004, July). Intricacies and inter-relationships between HIV disclosure and HAART: a qualitative study. AIDS CARE, 16(5), 628/640. doi:https://doi.org/10.1080/09540120410001716423

Lee, M. (2002, November 8). Parents’ disclosure of HIV to their children. AIDS, 16(16), 2201-2207. Retrieved from https://journals.lww.com/aidsonline/Fulltext/2002/11080/Parents__disclosure_of_HIV_to_their_children.13.aspx

Norman MA, C. M. (2007). Factors related to HIV Disclosure in Two South African Communities. American Journal of Public Health, 1775-1781. Retrieved from https://ajph.aphapublications.org/doi/epub/10.2105/AJPH.2005.082511

Obermeyer CM, B. P. (2011). Facilitating HIV Disclosure Across Diverse Settings: A Review. American Journal of Public Health, 1011-1023. doi:doi: 10.2105/AJPH.2010.300102