Is HIV Non-Disclosure Linked to Poorer Health?

Results of a two-year study challenge common beliefs

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Daniela Vladimirova

Most studies have shown that people who are afraid or unable to disclose their HIV status are at greater risk of isolation and depression. This, in turn, can make it harder to maintain the necessary levels of drug adherence to keep the virus fully suppressed, particularly if the HIV medications have to be taken in secrecy.

Common sense would dictate, therefore, that persons who fail to disclose their HIV status would be at greater risk of illness and death than those who do.

In recent years, scientists have begun to test that assumption and have come to some surprising conclusions.

Rates of Non-Disclosure

A two-year study, conducted by London-based Antiretrovirals, Sexual Transmission Risk, and Attitudes (ASTRA) cohort, recruited 3,258 HIV-positive men and women in eight clinics in the U.K. The participants were comprised of heterosexual women, men who had sex with men (MSM), heterosexual men, all of whom were monitored from 2009 to 2011.

The participants were each surveyed to determine whether they had disclosed their status to either "nobody," "some," or "most or all" of their social circle. Disclosure to casual sex partners was not included.

Overall, MSM were found to be more likely to disclose their HIV status with only five percent not disclosing to anyone at all. By contrast, 16 percent of heterosexual women and 17 percent of heterosexual men did not disclose.

The disparity was largely attributed to the perception that the "social penalty" for disclosure in the MSM community has was far less than in the other groups.

All told, the researchers were able to identify the following disclosure patterns:

Disclosed toMen Who Have
Sex With Men (MSM)
Heterosexual
Women
Heterosexual
Men
Nobody5%16%17%
No Family40%33%39%
No Friends14%43%56%
No Work Colleagues54%84%84%
Some Family32%44%47%
Some Friends56%38%50%
Some Work Colleagues39%13%14%
Most or All Family27%20%17%
Most or All Friends30%8%17%
Most or All Work Colleagues6%3%2%

Not surprisingly, non-disclosure to a spouse or stable partner was highest among heterosexual women (13 percent), followed by heterosexual men (10.9 percent) and MSM (4.9 percent).

Female disempowerment, the risk of violence, economic disparity, and other gender imbalances were just some of the reason why nearly one in seven women failed to disclosed.

Non-Disclosure and Health Outcomes

After establishing the disclosure status of each participant, the researchers factored in things like age, race, religion, treatment status, social support, and the individual's health status at the time of diagnosis.

These were then compared to the treatment and health status of the participant at the end of the two-year trial, including:

  • The level of drug adherence
  • The level of viral suppression (as measured by the viral load)
  • Depression and anxiety

What the investigators found was that non-disclosure, in and of itself, had absolutely no impact on any of these issues and that individuals who chose not to disclose were at no greater risk of poor health than those who did.

What they did find was that poor health was associated with other factors including older age, black ethnicity, a recent HIV diagnosis, and not being on HIV treatment.

Among MSM, having an affiliation with an religion was also associated with poorer health.

A Word From Verywell

While the results may suggest that HIV disclosure is not all that important—that you can do just fine whether you disclose your status or not—many argue that the study fails to take into account the impact that secrecy, isolation, and feelings of shame have on a person's health over the long term.

Today, with improved therapies offering greater "forgiveness" of treatment lapses, the focus has shifted from managing HIV as an isolated discipline to one in which HIV is managed as part of a person's general health.

And, that is where issues like isolation and lack of social support do matter. As independent factors, both are linked to higher rates of healthcare disengagement as well as an increased risk of all-cause mortality. Simply put, social isolation does not improve any illness, HIV or otherwise.

The bottom line is this: people with HIV are more likely today to die of a non-HIV-related illness than an HIV-related one. Moreover, many of these illnesses (like cancer and heart disease) tend to occur 10 to 15 years earlier than in the general population.

While HIV non-disclosure may not a direct impact on your ability to control the virus, its impact on your overall health and well-being could be far more detrimental.

Source:

Daskalopoulou, M.; Lampe, F.; Phillips, A. et al. "Non-disclosure of HIV serostatus and associations with psychological factors, ART non-adherence, and viral load non-suppression among people living with HIV in the UK." AIDS Behav. 2017; 21(1):184-95. DOI: 10.1007/s10461-016-1541-4.