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Sharing your HIV-positive status with anyone - whether it be a sexual partner, a family member or your employer - can be a difficult decision to make. There are both advantages and disadvantages to telling people about your status and these need to be carefully weighed up before you decide to disclose. There are only a very few instances where you are legally obliged to tell others about your status. In all other contexts, the decision lies solely with you.

Here are some pros and cons to think through before you discuss your HIV status.

Advantages

Sharing your status with others when you feel comfortable to do so can be incredibly empowering. This can help you deal with any shame you may feel about living with HIV.

Speaking about HIV openly combats stigma. Stigma usually arises from a lack of understanding, misinformation, and not ever having met someone with HIV. As someone who is living with HIV, you can help to change this.

Disclosure becomes easier the more you do it. While some people may react negatively, most people living with HIV find that sharing their HIV status with someone they trust is a positive experience.

It is helpful to have a support system of people in your life who know you have HIV. This can make a big difference in times of illness or when dealing with the psychological and emotional effects of stigma.

Sharing your status with health professionals such as your GP, dentist, pharmacist or psychologist will mean that they are better able to provide appropriate care that meets your needs as a person living with HIV.

Talking about having HIV may lead to increased trust and feelings of intimacy in a relationship or close friendship. You may never be able to allow yourself to be vulnerable if you feel you may be rejected; there is a sense of relief knowing you are accepted and loved despite your status.

While sharing your status with an HIV-negative sexual partner can be very difficult, it may also give you the opportunity to speak about ways in which your partner's health can be protected, such as using condoms, you being undetectable or your partner starting PrEP.

While your HIV-status is not the most important thing about you, it may have shaped your experiences and contributed to who you are in some meaningful way. Sharing this aspect of your journey allows people to understand you better.

"Talking about having HIV may lead to increased trust and intimacy in a relationship or friendship."

While disclosing in the workplace is rarely obligatory, telling your employer can allow them to make any necessary accommodations, such as time off work for medical appointments.

Some people living with HIV find it easiest to share their status publicly, such as on social media. While this is not the right option for everyone, it can help you control your narrative and choose when and how much to reveal. It can also act as a 'once-off' disclosure without having to disclose repeatedly to various people in your life.

Some dating apps also have the option to show your HIV status to everybody who views your profile. Some people find that this upfront form of disclosure filters out people with discriminatory beliefs and means that they don't need to mention HIV with everyone they chat to.

Disadvantages

Unfortunately, there is still a great deal of stigma and many negative perceptions about HIV-positive people, which may be revealed the moment you mention your HIV status, either through someone's questions or their altered behaviour.

Although there is no chance of transmitting the virus sexually if your HIV is well-managed and virally suppressed (Undetectable = Untransmittable, or U=U), very few people who are not diagnosed with HIV are aware of this fact. They may even refuse to believe it if you tell them. Thus, you may be opening yourself up to rejection from possible sexual or romantic partners even if there is no chance of infecting them.

If you feel forced to disclose when you are not ready, it can have a negative impact. Disclosure needs to be on your terms. It is your information to share.

Once you disclose your status, you cannot take it back. This is important in instances where disclosure could be harmful for you or have material consequences for your life - such as telling someone you are financially dependent on or someone you live with.

"Many people living with HIV have been subjected to rejection and hurtful reactions."

Discussing your HIV status may not go well if people have very stigmatising beliefs about HIV. While you may be able to educate people you disclose to, you may not want to take on that burden. Changing deep-seated beliefs and attitudes can be very challenging and it may not be something you want to take on.

At work, you may experience negative reactions ranging from maltreatment to a breach of confidentiality and even to unfair dismissal. While discrimination is illegal in many countries, it takes a great deal of effort, time and emotional energy to fight this type of injustice. You need to think very carefully about whether disclosing in the workplace is at all necessary, will have any potential benefits, or if it is simply best not to disclose.

Choosing whether or not to tell a sexual/romantic partner can be a complex decision. Many people living with HIV have been subjected to rejection and hurtful reactions, even when they take necessary precautions to prevent infection. You may be met with shock, anger, disappointment and disgust.

Depending on where you live, there may be differing laws regarding whether or not you have to tell sexual partners that you are living with HIV. In some places, you are always required to share your status with a sexual partner, regardless of their risk of infection. In other jurisdictions, there can be legal implications to not telling someone, if the sex you have puts the other person at risk of HIV infection or if HIV transmission occurs.

While you may request that people you share your status with keep it confidential, you do not have much control of this after you have disclosed. Your status might be used against you or can become a topic of gossip.

While upfront disclosure on dating apps works for some, there are also many HIV-positive people who find that it is inherently stigmatising and that it does not give a potential partner the chance to know you without the label of 'HIV positive'.

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Pros and cons of disclosing your HIV status

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Sharing your HIV-positive status with anyone - whether it be a sexual partner, a family member or your employer - can be a difficult decision to make. There are both advantages and disadvantages to telling people about your status and these need to be carefully weighed up before you decide to disclose.

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If you've just found out that you're HIV-positive, you may feel overwhelmed, fearful, and alone. But you're far from alone. People and resources are available to help you and the more than 1 million HIV-positive people living in the U.S. today.

It may help to remember that being HIV-positive is not the virtual death sentence it once was. HIV (human immunodeficiency virus) can lead to AIDS (acquired immunodeficiency syndrome). But being HIV-positive does not necessarily mean that you have AIDS. New treatments have turned being HIV-positive into a chronic condition for many people. With a healthy lifestyle and the right medical care, many HIV-positive people are living long, productive lives.

Still, learning that you are HIV-positive may leave you reeling. Where should you turn for help? Who should you tell? What should you do first? Here are a few guideposts to help you through this difficult time.

See an HIV and AIDS Doctor Right Away

After finding out you have HIV, fear about the future may make it hard for you to take action. But once you know you're HIV-positive, see a doctor with experience in HIV and AIDS as soon as you can. Don't put it off. Your doctor will run tests to see how well your immune system is working, how fast the HIV is progressing, and how healthy your body is overall. With this and other information, your doctor can work with you to come up with the best treatment plan, including when and how to begin treatment. HIV drugs can often slow or prevent the progression of HIV to AIDS. Left untreated, though, HIV can lead to serious illness and death.

Learn What It Means to Be HIV-Positive

Information is power, especially when that information can save your life. These steps will allow you to take an active role in your care.

Read about HIV in other sections of this website.

Seek information from government or nonprofit educational organizations with a focus on HIV and AIDS.

Learn about experimental and standard HIV treatments, as well as their side effects.

Talk with others who are HIV-positive.

Continued

Seek HIV-Positive Support Services

A wide range of people can help get you the emotional and physical support you may need to cope with your diagnosis of HIV. Seek the help you need -- whether it's getting a ride to doctor visits or simply finding a sympathetic ear. Here are some steps you can take right away:

Ask your doctor about local HIV and AIDS support groups. Or ask for a referral to a mental health professional, such as a psychologist, psychiatrist, or clinical social worker.

Find message boards or chat rooms online. Discuss with your doctor the information you get from these sources. Some are accurate; some are not.

Find a hotline by looking online under "AIDS, HIV Educational Referral and Support Services" or "Social Service Organizations." A person at the hotline can give you practical advice or emotional support over the phone. They can also refer you to local HIV and AIDS self-help organizations.

Tell Certain People

You don't have to share your HIV diagnosis with everyone. But some people may have a legal right to know. You may want to tell others voluntarily.

Sexual partners. New York, Georgia, Ohio, and 16 other states require you to disclose your HIV before you have sex with someone. Only Indiana and North Carolina require you to notify previous sexual partners. Even if it's not mandatory, consider disclosing your HIV status to people whose safety may depend on it.

Needle sharers. Twelve states require you to disclose your HIV to anyone who shares your needle to inject drugs.

Health care professionals. Other than your HIV doctor, you almost never are required to tell your other doctors, dentist, nurse, or other health specialists. But they may be better able to take care of you if they have a full picture of your health.

Family and friends. For the most part, this is your call. But opening up about your HIV may bring you emotional and other support, as well as help during your treatment or medical emergencies.

Employers. Your boss and company do not have a right to know about your HIV status unless there is a valid concern about accidental exposure to blood and other safety issues. And if you're worried about possible discrimination, it may be best not to tell.

Continued

Protect Others From Becoming HIV-Positive

Because you're HIV-positive, you can give the virus to others, even if you don't feel sick. This can happen through unprotected sex or by sharing needles. You can protect others by using condoms and clean needles. By doing this, you can also protect yourself from other strains of HIV. Also, don't donate blood.

If you are a woman, you can spread HIV to your baby during pregnancy, birth, or breastfeeding. Ask your doctor what you can do to protect your child. Proper treatment has nearly wiped out the spread of infection to newborns in the U.S.

Uninfected sexual partners can take a daily pill called PrEP (pre-exposure prophylaxis) for extra protection against HIV.

Monitor Your Health

Keep your doctor appointments. You'll have blood drawn every few months, especially in your first year. These tests track your HIV viral load, which tells how well your HIV drugs are working, and your CD4 count, which shows how well your immune system responds to treatment. The visits also will give you a chance to ask your doctor questions.

Watch for Complications

Without treatment, HIV weakens your immune system, so you may get sick more often or get sicker than people without HIV. The list of " opportunistic infections" you may get includes pneumonia, diarrhea, and tuberculosis.

Be alert to any symptoms that should be checked by your doctor, including:

Accept Your New Normal

Living with HIV marks a new phase of your life. But if you take your HIV medicines as prescribed, it can be as healthy, active, and fulfilling as before. Make it a priority to take care of your body and mind. Get help if you feel depressed, and stay connected to people in your life you love and who support you.

WebMD Medical Reference Reviewed by Jennifer Robinson, MD on October 25, 2020

Sources

SOURCES:

CDC: "Basic Statistics," "A Glance at the HIV/AIDS Epidemic," "Act Against AIDS: Conversation Starters," "HIV/AIDS: Telling Others," "Breastfeeding: Human Immunodeficiency Virus (HIV)," "AIDS and Opportunistic Infections."

University of California, San Francisco HIVInsite: "I just tested positive -- now what?"

AIDS InfoNet: "Safer Sex Guidelines."

National Institute of Allergy and Infectious Diseases: "HIV Infection and AIDS: An Overview."

U.S. Department of Health and Human Services: "Just Diagnosed: Next Steps After Testing Positive for HIV," "How to Find HIV Treatment Services," "HIV/AIDS: The Basics," "HIV and Mental Health," "State HIV/AIDS Hotlines."

HIV.gov: "Talking About Your HIV Status: Should You Tell Other People About Your Positive Test Results?" "Preventing Sexual Transmission of HIV."

U.S. Department of Veterans Affairs: "HIV/AIDS: Protect Others," "Find Support," "Be Aware of Possible Complications."

ADA.gov: "ADA.gov/HIV."

Canadian AIDS Treatment Information Exchange (CATIE): "Your Guide to HIV Treatment: Monitoring Your Health."

Avert: "Taking Care of Yourself When Living With HIV," "Life expectancy for people with HIV is now near-normal -- but only for those accessing treatment."

Lambda Legal: "Know Your Rights," "Privacy, Confidentiality and Disclosure."

Next In HIV Testing Series:
What Tests Diagnose HIV?

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What to Do After Being Diagnosed As HIV-Positive

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If you've just found out that you're HIV-positive, you may feel overwhelmed, fearful, and alone. But you're far from alone. People and resources are available to help you and the more than 1 million HIV-positive people living in the U.S. today. It may help to remember that being HIV-positive is not the virtual death sentence it once was.

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There are four stages of HIV and as with all illnesses, how it progresses, how long it takes and the affect it has on the individual depends on a number of factors for example, general health, lifestyle, diet etc.
Stage 1: Infection
HIV quickly replicates in the body after infection. Some people develop short lived flu-like symptoms for example, headaches, fever, sore throat and a rash within days to weeks after infection. During this time the immune system reacts to the virus by developing antibodies - this is referred to as 'sero-conversion'.

As the name suggests, this stage of HIV infection does not cause outward signs or symptoms. A person may look and feel well but HIV is continuing to weaken their immune system. This stage may last several years (an average of 8 to 10 years) and without a HIV test many people do not know they are infected.

Over time the immune system becomes damaged and weakened by HIV and symptoms develop. Initially they can be mild but they do worsen, symptoms include fatigue, weight loss, mouth ulcers, thrush and severe diarrhoea. The symptoms are caused by the emergence of opportunistic infections; they are referred to as opportunistic infections because they take advantage of a person's weakened immune system. Some examples of opportunistic infections are PCP, toxoplasmosis, TB and kaposi sarcoma.

Stage 4: AIDS/Progression of HIV to AIDS

There is no single test for AIDS; doctors will look at a variety of symptoms including the CD4 count, the viral load and the presence of opportunistic infections in order to make an AIDS diagnosis

Although HIV disease progression is described in stages, it is not inevitable that a person will go from Stage 1 Infection to Stage 4 AIDS. There is treatment available that can prevent a person developing AIDS and deal with the symptoms of HIV infection. There are a number of people living with HIV who have not developed AIDS even without medical intervention, these people are referred to as 'long-term non progressors' and have been subject to much research in the hope of finding more information about their immune systems.

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There are four stages of HIV and as with all illnesses, how it progresses, how long it takes and the affect it has on the individual depends on a number of factors for example, general health, lifestyle, diet etc. Stage 1: Infection HIV quickly replicates in the body after infection.

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Talking to someone you trust about your HIV diagnosis can help you process your thoughts and emotions.

Revealing your status to family and friends may be hard. Sometimes talking to a counsellor or peer support group first can help.

You should never feel pressured into disclosing your status to anyone you don't trust.

If you are worried about telling people that you have HIV, you're not alone. For many people living with HIV, particularly when they have just been diagnosed, telling other people is one of their main concerns.

Sharing the news of your diagnosis (also called disclosure) with your partner, a close friend or family member and talking about your feelings can be really helpful, and your friends and family may be a good source of support.

Unfortunately, in many communities, there is stigma attached to HIV, and it may be that some of the people you know do not really understand what it means to have HIV. They may not understand how it is passed on, be afraid, or judgmental.

It is up to you to decide who you tell. You may find it helpful to talk to a healthcare professional, or a peer support group, first.

Who should I tell?

It's up to you to decide who you tell. You may decide you want to be completely open about your HIV status, or you may decide to only tell a small number of people close to you - it's your choice.

Besides the doctor, my husband is the only one who knows my status. I'm afraid to tell anyone else because I fear them seeing me different.

You don't have to decide right away. Take your time to take in the news that you have HIV.

Who you tell will also depend on your situation, and the relationships you have with people. Because HIV can be passed on during sex, telling someone who is a current or previous sexual partner can be particularly difficult and emotional.

Depending on where you live, there may be some legal issues you have to consider. In some countries, if you know you have HIV, then having sex without disclosing your HIV status first is against the law. Talk to your doctor or someone in an HIV organisation about the situation where you live.

Often people have concerns about telling their employer, or immigration authorities. Again, this will depend on where you live. For example, in the UK, there are very few jobs which require you to tell your employer if you have HIV - if you are a surgeon for instance - and having HIV does not affect your immigration status.

Positive and negative reactions

It can be helpful to think about what kind of reaction you might expect from someone you are considering telling. Do you think they will be calm and supportive? Are they likely to get upset and worried for you? Is there a chance they could be angry, or even violent?

Talking to a healthcare professional, or a support group or organisation, can help you to think about the kind of reaction you are expecting and how you might handle it. In some situations, it might be possible for someone to be with you when you disclose.

While it is important to consider the negative reactions that some people sadly do experience, it's also really important to remember that many people have good experiences of disclosing their HIV status.

My parents have been nothing less than supportive and helpful through this entire time. They bought a ton of books about HIV and informed themselves as much as they possibly could about prevention and nutrition and how to help physically and emotionally. I am forever grateful to have their unwavering support and unconditional love.

Being able to be open and honest with someone about your HIV status and your feelings can be really powerful. It can make you feel closer to the person, and they may offer you emotional and practical support when you need it.

How do I tell people?

It's worth thinking about how you will tell someone you have HIV. It can help to have some information on hand to share with them. They may not know about how HIV is passed on, or about HIV treatment. They may assume that you don't have long to live, or that you won't be able to have relationships or have a family. If you can help them to understand the facts about HIV, they are less likely to react negatively.

It's a good idea to find a time when you are unlikely to be interrupted, and you can take your time, and to talk in a setting where it's quiet and you can sit comfortably together. Give them time to process what you're saying, and check they understand.

At first, I didn't want my parents and friends to know what was going on with me. I isolated myself from all my friends and family. I finally found the best opportunity for me to disclose my HIV status to my sister. I am thankful because my sister was able to understand me and I asked her to educate my mom about HIV. After disclosing my status I don't have any burden at all. I don't care if everyone around the world knows that I am living with HIV.

How do I talk to my children about HIV?

It can be difficult to decide how much information to give children about HIV. Every child is different, and every parent is different, so there isn't necessarily a 'right' way to tell your child that they, and/or you have HIV.

Often, telling a child that they have HIV is done over time, giving them information at the level they can understand, depending on their age. Children will often have questions about why they are taking treatment, or why they have to see their doctor, and this can present an opportunity to give information and offer reassurance.

Talking to other parents and a healthcare professional at your child's clinic can help you think about what you might like to do and when.

HELP US HELP OTHERS
Photo credit: ©iStock.com/lolostock

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Talking to someone you trust about your HIV diagnosis can help you process your thoughts and emotions. Revealing your status to family and friends may be hard. Sometimes talking to a counsellor or peer support group first can help. You should never feel pressured into disclosing your status to anyone you don't trust.

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Yann Ruffieux, 1 Liis Lemsalu, 2 , 3 Karoline Aebi‐Popp, 4 Alexandra Calmy, 5 Matthias Cavassini, 6 Christoph A Fux, 7 Huldrych F Günthard, 8 , 9 Catia Marzolini, 10 , 11 Alexandra Scherrer, 8 , 9 Pietro Vernazza, 12 Olivia Keiser, 13 Matthias Egger, 1 , 14 and the Swiss HIV Cohort Study and the Swiss National Cohort †

Abstract

Introduction

In many countries, mortality due to suicide is higher among people living with HIV than in the general population. We aimed to analyse trends in suicide mortality before and after the introduction of triple combination antiretroviral therapy (cART), and to identify risk factors associated with death from suicide in Switzerland.

Methods

We analysed data from the Swiss HIV Cohort Study from the pre‐cART (1988‐1995), earlier cART (1996‐2008) and later cART (2009‐2017) eras. We used multivariable Cox regression to assess risk factors for death due to suicide in the ART era and computed standardized mortality ratios (SMRs) to compare mortality rates due to suicide among persons living with HIV with the general population living in Switzerland, using data from the Swiss National Cohort.

Results and Discussion

We included 20,136 persons living with HIV, of whom 204 (1.0%) died by suicide. In men, SMRs for suicide declined from 12.9 (95% CI 10.4‐16.0) in the pre‐cART era to 2.4 (95% CI 1.2‐5.1) in the earlier cART and 3.1 (95% CI 2.3‐4.3) in the later cART era. In women, the corresponding ratios declined from 14.2 (95% CI 7.9‐25.7) to 10.2 (3.8‐27.1) and to 3.3 (95% CI 1.5‐7.4). Factors associated with death due to suicide included gender (adjusted hazard ratio 0.58 (95% CI 0.38‐0.87) comparing women with men), nationality (1.95 (95% CI 1.34‐2.83) comparing Swiss with other), Centers for Disease Control and Prevention clinical stage (0.33 (95% CI 0.24‐0.46) comparing stage A with C), transmission group (2.64 (95% CI 1.71‐4.09) for injection drug use and 2.10 (95% CI 1.36‐3.24) for sex between men compared to other), and mental health (2.32 (95% CI 1.71‐3.14) for a history of psychiatric treatment vs. no history). There was no association with age.

Conclusions

Suicide rates have decreased substantially among people living with HIV in the last three decades but have remained about three times higher than in the general population since the introduction of cART. Continued emphasis on suicide prevention among men and women living with HIV is important.

Keywords: HIV, suicide, Switzerland, SMR, comparative study, intravenous drug use

1. Introduction

Depression, anxiety and other mental health problems are common among people living with HIV, and more common than in the general population or among comparable HIV‐negative people 1, 2, 3, 4. In the era before the advent of triple combination antiretroviral therapy (cART), several studies showed that HIV infection was also associated with suicide 5, 6. In Switzerland, suicides accounted for 6% of deaths among people living with HIV 7. An analysis of the Swiss HIV Cohort Study (SHCS) found that during the years 1988 to 2008, suicide rates decreased somewhat with the introduction of cART, but remained above the rate observed in the general population. A recent study in the UK also found that in the cART era, HIV‐related suicide rates were higher than in the general population 8.

A French study reported that risk factors for suicide among persons living with HIV included a history of intravenous drug use (IDU), alcohol abuse and a history of depression or attempted suicide 9. In the Swiss study 10, a history of treatment by a psychiatrist was a predictor of suicide both before and after the introduction of cART, while factors such as advanced clinical stage and gender were important only before cART was introduced. Several antiretroviral drugs have been associated with adverse effects that could lead to suicide ideation 11, including efavirenz or dolutegravir, drugs which are widely used and recommended by the World Health Organization 12, 13, 14.

In this article, we update the previous analysis 10 of mortality rates due to suicide in persons living with HIV and the general population in Switzerland, to explore risk factors and time trends in suicide over almost 30 years, from the pre‐cART era up to recent years.

2. Methods

We analysed suicide rates and risk factors in the SHCS. Rates of suicide in people living with HIV were compared to suicide rates in the general Swiss population using data from the Swiss National Cohort (SNC). Throughout this study, the outcome of interest was death by suicide. No data were available on suicide ideation, or suicide attempts.

2.1. Data sources

The SHCS ( www.shcs.ch) is an ongoing multicenter study involving people living with HIV aged 18 years or older 15. The study collects key patient information such as demographic characteristics, information on HIV‐related diseases and treatments, and laboratory measurements. This information is collected at enrollment and at six‐monthly follow‐up visits. The cohort is estimated to cover around 45% of the cumulative number of HIV infections notified to the Swiss health authorities, 69% of people living with AIDS and 75% of individuals receiving antiretroviral treatment 15.

The SNC ( www.swissnationalcohort.ch) is a national longitudinal study on mortality, based on the probabilistic linkage of individual‐based data from 1990 and 2000 nationwide censuses with Federal mortality records 16. The cohort consists of 6.9 million census participants in 1990 and 7.3 million in 2000.

2.2. Data analysis

We compared characteristics of participants enrolled in the SHCS during the pre‐cART era (1988‐1995), earlier cART (1996‐2008), and later cART era (2009‐2017) between those who died by suicide (code 'suicide' in the SHCS, ICD‐8 codes E950‐959 and ICD‐10 codes X60‐X84 in the SNC) and those who did not. Completeness and quality of mortality data in the SHCS are high 7. For each year, we calculated the expected number of suicides, per sex and per five‐year age group, based on rates from the SNC data. From this we derived standardized mortality ratios (SMRs) for each ART era, assuming a Poisson distribution. We split the earlier cART era further into sub‐periods 1996‐1998 and 1999‐2008. We analysed predictors for suicide in the SHCS using multivariable Cox regression. This was done separately for the pre‐cART, earlier cART and later cART eras. We included the following predictors in the models: age at enrollment (per 10 years increase), gender, nationality (Swiss/other) and mode of transmission (injection drug use, men having sex with men, or other), Centers for Disease Control and Prevention (CDC) clinical stage as a time updated variable (A, B, or C), and prior treatment by a psychiatrist as a time‐updated variable. We used interaction tests to assess differences in associations between risk factors and suicide across time periods. We carried out a separate Cox regression analysis covering the period 2002 to 2017, which included socio‐economic factors: education (at enrollment, tertiary vs. other), living alone (time‐updated), and unemployment (time‐updated, defined as 50% or more of revenue provided by unemployment benefits since previous visit). We verified the Cox proportional hazards assumptions using Schoenfeld residual tests. In order to examine to what extent the trends observed were driven by specific patient groups, we recalculated SMRs after excluding individuals who had contracted HIV through IDU or through sex between men, and individuals treated by a psychiatrist at enrollment.

We identified predictors for efavirenz and dolutegravir use in patients on cART, using multivariate logistic regressions. Models were adjusted for age at enrollment, sex, nationality, transmission group, CDC clinical stage at enrollment, and history of psychiatric treatment at enrollment. Finally, we examined the association between efavirenz‐based therapy (time‐updated) and suicide among patients on cART, adjusting for the factors mentioned above. We performed a similar analysis for dolutegravir‐based therapy in the late cART era. Results are presented as adjusted hazard ratio (aHR) or adjusted odds ratio (aOR), with 95% confidence intervals.

3. Results and discussion

3.1. Characteristics of study population

We included 20,139 patients in the analysis. Participants enrolled in the later cART era were older and less likely to be women, Swiss nationals, or to have acquired HIV through injection drug use compared to those enrolled in the earlier cART era; they were also less likely to be in an advanced stage of HIV and more likely to be treated by a psychiatrist at enrollment (Table ).

Table 1

3.2. Trends in suicide rates in people living with HIV and the general population

Overall, 204 people with HIV died by suicide over 184,402 person‐years, for a rate of 110.6 per 100,000 person‐years (95% CI 96.4‐126.9). Figure shows trends in rates of suicide in comparison to the general Swiss population. In men living with HIV, crude suicide rates decreased from 446.1 per 100,000 person‐years (95% CI 358.8‐554.7) in the pre‐cART era, to 99.1 (95% CI 51.6‐190.5) in the two years following the introduction of cART, then to 72.4 (95% CI 55.3‐96.4) in the later cART era. In women, the corresponding decline was from 148.9 (95% CI 82.5‐268.9), to 74.9 (95% 24.2‐232.3), then to 34.0 (95% CI 17.0‐68.1). Crude rates also declined in the general Swiss population from the pre‐cART era to the later cART era: from 32.6 (95% CI 32.1‐33.2) to 19.5 (95% CI 19.0‐20.1) in men, and from 12.9 (95% CI 12.6‐13.2) to 6.8 (95% CI 6.5‐7.1) in women. The SMRs comparing men living with HIV with men from the general population decreased from 12.9 (95% CI 10.4‐16.0) in the pre‐cART era, to 2.4 (95% CI 1.2‐5.1) after the introduction of cART, after which it increased slightly to 3.1 (95% CI 2.3‐4.3) in the later cART era. In women, the corresponding ratios declined from 14.2 (95% CI 7.9‐25.7) to 10.2 (3.8‐27.1), and to 3.3 (95% CI 1.5‐7.4).

The biggest drop in rates was thus observed after cART was introduced in 1996. Since then no important decline in rates was observed in men, despite the more tolerable, efficacious and simpler antiretroviral drug regimens that became available in the later cART period 17. In contrast, rates continued to decline in women. Rates also decreased in the general population, and the suicide rates among people living with HIV continued to be over three times higher compared to the general Swiss population, both in women and men.

Results were similar after excluding men who have sex with men (MSM) or patients being treated by a psychiatrist at enrollment (Figure ). When excluding individuals who contracted HIV through IDU, results were similar in men, whereas in women the SMR was close to 1 in the later cART period, with wide confidence intervals.

3.3. Risk factors for suicide in people living with HIV

Participants of the SHCS who died by suicide were more likely to be male, of Swiss origin, have a history of IDU and have a lower CD4 cell count at the last visit than patients who did not die by suicide. In the two cART eras, but not in the pre‐cART era, those who died by suicide were also more likely to be in a more advanced clinical stage, and more likely to have been in psychiatric treatment (Table ). Table summarizes risk factors for suicide. All variables except age were important predictors of suicide over the entire study period. When analysed by period, psychiatric treatment was a strong predictor for suicide in all three eras, with HRs ranging from 2.41 to 3.67. Men and Swiss nationals had higher rates of suicide than women and other nationals, and patients with less advanced disease (stage A) had lower rates than those with more advanced disease, but these associations did not reach conventional levels of statistical significance for each ART era. When formally assessing trends across periods using interaction tests, there was little evidence that associations with risk factors changed ( p values from interaction tests all > 0.1), in contrast to the previous analysis of the SHCS data up to the year 2008 10.

Table 2

We found that living alone was associated with higher suicide rates (aHR 1.83, 95% CI 1.17‐2.87) during 2002‐2017, independently of the other factors. We found no such association with education and unemployment. Furthermore, adjusting for these socio‐economic factors did not noticeably alter the estimated effect of the other variables on suicide rates.

Among individuals on cART, those with a history of psychiatric treatment at enrollment were less likely to be prescribed efavirenz compared to those without (aOR 0.70; 95% CI 0.60‐0.81). Similarly, participants with a history of IDUs were less likely to be prescribed efavirenz than patients in the other transmission groups (aOR 0.58; 95% CI 0.51‐0.65). Women were less likely to receive efavirenz than men (aOR 0.87; 95% CI 0.79‐0.95, comparing women to men). Dolutegravir was more likely to be prescribed to Swiss nationals than to non‐Swiss (aOR 1.28; 95% CI 1.10‐1.49), and to patients with advanced CDC clinical stage. We found no evidence that efavirenz‐based therapy was associated with suicide in HIV‐positive people on cART (aHR 1.00, 95% CI 0.66‐1.52). The analysis for dolutegravir‐based cART was similarly inconclusive (aHR 0.38, 95% CI 0.09‐1.57).

Male gender, Swiss nationality, a history of injection drug use, sexual contact between men, or of treatment by a psychiatrist and being at a more advanced clinical stage were thus risk factors for suicide among HIV‐positive people living in Switzerland, confirming risk factors found in earlier studies from France and Denmark 9, 18. Of note, there was little evidence that the strength of the associations with these risk factors changed over the study period, in contrast to a previous analysis of the SHCS including data up to the year 2008 10. The lack of an association with efavirenz supports the notion that in clinical practice, efavirenz may be less frequently used in patients with underlying psychiatric conditions 19.

3.4. Strengths and limitations

Strengths of this study include the large number of patients followed up during almost 30 years. The SHCS enrolled about 45% of all patients with HIV and about 70% of patients with AIDS in the country 15, and results are likely to be applicable to Switzerland and similar countries. Another strength was the inclusion of data from the SNC 16, which allowed us to compare time trends in suicide rates and risk factors between HIV‐infected patients and the general population.

Our study has several limitations. We standardized the SMRs with respect to age, calendar year, and gender, but not with respect to sexual orientation, IDU, or other lifestyle factors that could affect suicide rates. Another limitation of our study is the possible misclassification of suicide and death by accidental overdose in participants with a history of IDU. Suicide attempts were not collected. Furthermore, we could not distinguish between suicide and assisted suicide. The latter is legal in Switzerland under certain conditions 20, but is not specifically reported in the SHCS. Assisted suicide rates have increased in Switzerland over the past decade, but this increase mainly concerned the elderly 21, 22.

3.5. Interpretation and context

Sexual orientation, substance use and other mental health problems may be distal common causes of HIV infection and suicide, with HIV‐related stigma, addiction, and depression on the proximal causal pathway to suicide 23. These variables were not available for the general population in this study, precluding, for example, comparisons of suicide rates in MSM with heterosexual men. Meta‐analysis of cross‐sectional studies of lifetime suicide attempts showed that the risk was higher in lesbian, gay and bisexual people than heterosexual people, and particularly high in gay and bisexual men 24. A Danish study 25, but not a study from the United States of America 26, showed that mortality from suicide was higher in MSM than in heterosexual men. Our sensitivity analyses excluding people who acquired HIV through IDU or through MSM are compatible with the hypothesis that the increased risk of suicide in HIV‐positive women may mainly be driven by IDU, whereas in men it may be related to both to IDU and the higher incidence in MSM, mediated by stigma, isolation and discrimination. In a French survey, poor socio‐economic status was shown to be associated with an increased risk of suicide attempts in women with HIV 27, while loneliness and discrimination were also associated with a higher risk of suicide, independently of sex and sexual orientation 28.

How do suicide rates in people with HIV compare with those suffering from other conditions? Suicide rates have been shown to be higher in people with conditions associated with chronic pain or poor prognosis 29, including patients with cancer 30, neurological diseases such as amyotrophic lateral sclerosis 31 or progressive multiple sclerosis 32. An analysis of the Surveillance, Epidemiology and End Results database 1973 to 2013 in the United States of America showed that SMRs for suicide ranged from 1.18 for prostate cancer to 4.17 for lung cancer 33. SMRs decreased over time for all cancers, but particularly for lung cancer. An increased risk of suicide has also been shown for several neurological disorders, including multiple sclerosis, stroke, Huntington disease and epilepsy, whereas Parkinson's disease may be associated with a reduced risk of suicide 34. Of note, in a nationwide sample of people with HIV on cART in the Netherlands, poor mental health was more common in people living with HIV compared to people living with diabetes or rheumatoid arthritis 35.

4. Conclusions

Since the introduction of cART in 1996, mortality rates due to suicide have significantly decreased in men and women living with HIV in Switzerland, but no important improvements in SMRs were observed in men in more recent years, despite the advent of more tolerable, more efficacious and less complex antiretroviral drug regimens in the later cART period 17. Furthermore, it is noteworthy that the SMRs were larger than those reported in the literature for conditions with worse prognosis. In Switzerland and elsewhere, there is a continued need to monitor depression, suicidality in HIV‐positive people, and to develop tailored suicide prevention programs aimed at reducing suicide risk in people living with HIV.

Competing interests

The authors declare no conflict of interest. HFG has received unrestricted research grants from Gilead Sciences and Roche; fees for data and safety monitoring board membership from Merck; consulting/advisory board membership fees from Gilead Sciences, Sandoz and Mepha.

Authors' contributions

ME, LL and OK wrote the study protocol. YR performed the statistical analyses and wrote the first draft of the paper, which was revised by ME, LL and OK. All authors contributed to collecting data, commented on the manuscript and approved the final version.

Acknowledgements

We are grateful to Manuel Battegay, Enos Bernasconi Angela Ciuffi, David Haerry and Begoña Martinez de Tejada for helpful comments on an earlier draft of this paper. We thank the patients who participated in the SHCS; the physicians and study nurses, for excellent patient care; Susanne Wild, Anna Traytel from the SHCS data center for data management, Danièle Perraudin and Mirjam Minichiello for administrative support.

Funding

This study was funded within the framework of the SHCS, supported by the Swiss National Science Foundation (grant #177499). The data are gathered by the Five Swiss University Hospitals, two Cantonal Hospitals, 15 affiliated hospitals and 36 private physicians (see http://www.shcs.ch/180-health-care-providers). ME was supported by special project funding (Grant No. 174281) from the Swiss National Science Foundation (grant #163878).

Appendix 1.

1.1.

The members of the Swiss HIV Cohort Study (SHCS) are Anagnostopoulos A, Battegay M, Bernasconi E, Böni J, Braun DL, Bucher HC, Calmy A, Cavassini M, Ciuffi A, Dollenmaier G, Egger M, Elzi L, Fehr J, Fellay J, Furrer H, Fux CA, Günthard HF (President of the SHCS), Haerry D (deputy of 'Positive Council'), Hasse B, Hirsch HH, Hoffmann M, Hösli I, Huber M, Kahlert CR (Chairman of the Mother & Child Substudy), Kaiser L, Keiser O, Klimkait T, Kouyos RD, Kovari H, Ledergerber B, Martinetti G, Martinez de Tejada B, Marzolini C, Metzner KJ, Müller N, Nicca D, Paioni P, Pantaleo G, Perreau M, Rauch A (Chairman of the Scientific Board), Rudin C, Scherrer AU (Head of Data Centre), Schmid P, Speck R, Stöckle M (Chairman of the Clinical and Laboratory Committee), Tarr P, Trkola A, Vernazza P, Wandeler G, Weber R, Yerly S TBD.

Notes

Ruffieux, Y. , Lemsalu, L. , Aebi‐Popp, K. , Calmy, A. , Cavassini, M. , Fux, C. A. , Günthard, H. F. , Marzolini, C. , Scherrer, A. , Vernazza, P. , Keiser, O. , Egger, M. and for the Swiss HIV Cohort Study and the Swiss National Cohort . Mortality from suicide among people living with HIV and the general Swiss population: 1988‐2017. J Int AIDS Soc. 2019; 22(8):e25339 [ Google Scholar]

Contributor Information

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References

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# data[].attributes.attachment_link.title
Mortality from suicide among people living with HIV and the general Swiss population: 1988‐2017

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In many countries, mortality due to suicide is higher among people living with HIV than in the general population. We aimed to analyse trends in suicide mortality before and after the introduction of triple combination antiretroviral therapy (cART), and ...

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Overview

The first reported cases of HIV/AIDS in Malaysia were in 1986. Since that time, there are now over 100,000 reported cases of HIV infections in the country, and over 16,000 people have died from AIDS as of December 2013.

The epidemic in this country is concentrated within injecting drug users (IDU), sex workers (SW), transgender (TG) and men who have sex with men (MSM) communities. At the end of 2012, Malaysia was estimated to 81,900 people living with HIV (PLHIV) since the first case was detected 27 years ago. In 2013 3,393 new HIV infections were reported, which means that every day almost 10 Malaysians become HIV infected.

The majority of new HIV infections are found in young adults aged 20 to 29 (31% of cases in 2013) and those aged 30 to 39 (35% of cases in 2013). It is important to note that around 66% of new HIV infections are found in adults aged 20-39, which is concerning since this is the age range in which citizens are most productive. As the epidemic progresses we also note an increasing percentage of middle-aged people living with HIV.

In Malaysia, we see a higher rate of HIV transmission through sexual transmission (74% of cases in 2013) versus injecting drug use (22%). The official number of infections transmitted through heterosexual intercourse has increased from 45% of cases in 2012 to 51% of cases in 2013.

The number of HIV positive women has been increasing as well. In 2001, the ratio of HIV positive men versus HIV positive women was 10:1, but in 2013 this ration has dramatically changes to 4:1.

Statistics

The majority people living with HIV in Malaysia are men, but the ratio is decreasing.

70% of new HIV infections in 2013 were Malay.

Every day almost 10 Malaysians are diagnosed HIV positive

31% of newly reported cases in Malaysia are in their twenties

In 2013, Malaysia marked more than 100,000 people diagnosed with HIV since the first case in 1986.

AIDS has caused the deaths of more than 13,000 Malaysians

Get Tested if you want to know your status - call 03.4044.4611 to make an appointment. More recent information on the HIV and AIDS statistics in Malaysia.

Number of New HIV Infections, AIDS Cases and AIDS Deaths by Gender Per Year Reported in Malaysia

(From 1986 until 2010)

Total Number of HIV/AIDS Cases and Related Deaths Reported in Malaysia

(From 1986 to 2010)

Total Number of HIV/AIDS Cases and Related Deaths Reported in Malaysia

(1986 - 2008,2009 and 2010)
Source: AIDS/STI Unit, Ministry of Health Malaysia
Prepare by: Resource Center. Malaysian AIDS Council (MAC)

Red Book - Policy and Your Rights

The Malaysian Bar Council has published booklets detailing an individual's rights and obligations during basic encounters with the police. This book, launched by Minister Nazri Aziz, is writ ten in plain language and is available in English, Malay, Chinese and Tamil.

Download Links: English version, Malay version, Chinese version.

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The first reported cases of HIV/AIDS in Malaysia were in 1986. Since that time, there are now over 100,000 reported cases of HIV infections in the country, and over 16,000 people have died from AIDS as of December 2013.