HTTP://WWW.POSITIVEWOMEN.ORG.

AU/WOMEN-AND-HIV/WOMENS-
STORIES/JULIES-STORY
JULIE'S STORY
January 2005: Life is great! I'm twenty seven years old and have my life ahead of me. Have
started a new job. Have my own home. I'm involved in lots of community projects.

March 2005: Have picked up a stubborn flu that has me off work for 2-3 weeks.

May 2005: Flu returns, but also vomiting and strange rash. Doctor thinks it's viral. She runs
tests, all negative. The doctor wants to do an HIV test!

The doctor asked if I think I had ever been exposed to HIV? No. I'm in my second sexual
relationship, we were using protection and when we decided to stop, I was STI free and he
assured me he was too. The first test is "indeterminate" and we decide to re-run the test. A
week later I ring the doctor and she tells me I should come in right away.

One life-changing sentence: "I don't know how to tell you this, but the test has come back
positive." I go into shock. I can't think of anything but: "I am going to die". I don't believe the
doctor when she tells me I am going to be OK. How could this have happened? The penny
drops. I grab the phone, call and tell him what has happened. He is floored and doesn't know
what to say. I break all contact. Too much distrust. I visit my family and between sobs tell
them what has happened. They are upset and shocked, but hold me as I cry.

Two years on, and my life and attitude is very different. Yes, I had some bad times, struggling
to get my head around HIV. I grieved for my old life and self. I felt guilt, anger, and that I had
been cheated. What did the future hold for me? Who would want me now that I was HIV-
positive?

While I am not yet on treatment, the thought that one day my immune system might become
too damaged to fight the virus sometimes feels like a weight hanging over me. But I've found
strength and, using the support offered me, regained my self confidence and self worth.

I now know I am not going to die and that I am, in fact, in pretty good health. I am stronger,
more confident and have a new zest for life. I have changed jobs and now work in the HIV
sector. This has helped me deal with being HIV-positive, and given me a way to give
something back and to help others.
Most importantly, I have a new partner. He is a beautifully understanding man who accepts
me for who I am, loves me unconditionally and supports all that I do. He is HIV-negative. I
am lucky. My family and friends are very supportive. Many other HIV-positive people cannot
say the same thing.

While there have been many improvements in the views about, and support for, HIV-positive
people, I still get shocked by the lack of knowledge and awareness of HIV and STI's in some
sections of the community. There is still so much work yet to do.

I want others to know my story so that they think about and make informed decisions about
their sexual health. I want my story to help reduce the discrimination and stigma that HIV-
positive people face. And I want other young positive women to know that they are not alone.
Yes, HIV is life-changing and it does not discriminate. But it is also manageable, and, most
importantly, avoidable.

Be informed about your sexual health and that of your partner, because protection really is
everybody's business.

Information provided on this website is for educational purposes only. It is designed to support, not replace,
personal medical care and should never be used as a substitute for personal medical attention, diagnosis, or
hands-on treatment. We recommend all medical decisions be made in consultation with your personal health
care provider.

Effects of HIV on Your Body

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You’re likely familiar with HIV, but you may not know how it can affect your body.
Technically known as the human immunodeficiency virus, HIV destroys CD4+ cells, which
are critical to your immune system. They’re responsible for keeping you healthy from
common diseases and infections.

As HIV gradually weakens your natural defenses, signs and symptoms will occur. Find out
what happens when the virus enters your body and interrupts its systems.
Once the human immunodeficiency virus (HIV) enters your body, it launches a direct attack
on your immune system. How quickly the virus progresses will vary by your age, overall
health, and how quickly you’re diagnosed. The timing of your treatment can make a huge
difference.

HIV targets the type of cells that would normally fight off an invader like HIV. As the virus
replicates, it damages or destroys the infected CD4+ cell and produces more virus to infect
more CD4+ cells. Without treatment, this cycle can continue until your immune system is
badly compromised, leaving you at risk for serious illnesses and infections.

Acquired immunodeficiency syndrome (AIDS) is the final stage of HIV. At this stage, the
immune system is severely weakened, and the risk of contracting opportunistic infections is
much greater. However, not everyone with HIV will go on to develop AIDS. The earlier you
receive treatment, the better your outcome will be.
Many of the effects described here are related to the failure of the immune system in HIV
and AIDS that is progressing. Many of these effects are preventable with early antiretroviral
treatment, which can preserve the immune system.

Immune system

Your immune system prevents your body from acquiring the diseases and infections that
come your way. White blood cells defend you against viruses, bacteria, and other organisms
that can make you sick.

Early on, symptoms may be mild enough to be dismissed, but after a few months, you may
experience a flu-like sickness that lasts a few weeks. This is often associated with the first
stage of HIV, which is called the acute infection stage. You may not have many serious
symptoms, but there are usually large quantities of virus in your blood as the virus
reproduces rapidly.

Acute symptoms can include:

 fever

 chills

 night sweats

 diarrhea

 headache

 muscle aches

 joint pain

 sore throat

 rash

 swollen lymph glands

 mouth or genital ulcers

The next stage is called the clinical latent infection state. On average, it lasts 8 to 10 years.
In some cases, it lasts much longer than that. You may or may not show signs or have
symptoms during this stage.

As the virus advances, your CD4+ count decreases more drastically. This can lead to
symptoms such as:

 fatigue

 shortness of breath

 cough

 fever

 swollen lymph nodes

 weight loss

 diarrhea

If the HIV infection advances to AIDS, the body becomes prone to opportunistic infections.
This puts you at an increased risk of many infections, including a herpes virus called
cytomegalovirus. It can cause problems with your eyes, lungs, and digestive tract.

Kaposi sarcoma, another possible infection, is a cancer of the blood vessel walls. It’s rare
among the general population, but common in people who are HIV-positive. Symptoms
include red or dark purple lesions on the mouth and skin. It can also cause problems in the
lungs, digestive tract, and other internal organs.

HIV and AIDS also puts you at higher risk of developing lymphomas. An early sign of
lymphoma is swollen lymph nodes.

Respiratory and cardiovascular systems

HIV increases the risk of colds, influenza, and pneumonia. Without preventive treatment for
HIV, advanced treatment puts you at an even greater risk for complications like
tuberculosis, pneumonia, and a disease called pneumocystis carinii pneumonia (PCP). PCP
causes:

 trouble breathing

 cough

 fever

Your risk for lung cancer also increases with HIV. This is caused by weakened lungs from
numerous respiratory issues related to a weakened immune system. According to National
AIDS Manual (NAM), lung cancer is more prevalent among people with HIV compared to
people without it.

HIV raises the risk of pulmonary arterial hypertension (PAH). PAH is a type of high blood
pressure in the arteries that supply blood to the lungs. Over time, PAH will strain your
heart.

If you have HIV and have become immunocompromised (have a low T cell count), you’re
also more susceptible to tuberculosis (TB), a leading cause of death in people who have
AIDS. TB is an airborne bacterium that affects the lungs. Symptoms include chest pain and
a bad cough that may contain blood or phlegm, which can linger for months.

Digestive system

Since HIV affects your immune system, it also makes your body more susceptible to
infections that can affect your digestive system. Problems with your digestive tract can also
decrease your appetite and make it difficult to eat properly. As a result, weight loss is a
common side effect.

A common infection related to HIV is oral thrush, which includes inflammation and a white
film on the tongue. It can also cause inflammation of the esophagus, which can make it
difficult to eat. Another viral infection that affects the mouth is oral hairy leukoplakia,
which causes white lesions on the tongue.

Salmonella infection is spread through contaminated food or water, and causes diarrhea,
abdominal pain, and vomiting. Anyone can get it, but if you have HIV, you’re at higher risk
of serious complications from this infection.

Consuming contaminated food or water can also result in a parasitic intestinal infection
called cryptosporidiosis. This infection affects the bile ducts and intestines and can be
particularly severe. For people with AIDS, it can cause chronic diarrhea.

HIV-associated nephropathy (HIVAN) is when the filters in your kidneys become inflamed,
making it harder to remove waste products from your bloodstream.

Central nervous system

While HIV doesn’t generally directly infect nerve cells, it does infect the cells that support
and surround nerves in the brain and throughout the body.

While the link between HIV and neurologic damage isn’t completely understood, it’s likely
that infected support cells contribute to nerve injury. Advanced HIV infection can damage
nerves (neuropathy). Small holes in the conducting sheaths of peripheral nerve fibers
(vacuolar myelopathy) can cause pain, weakness, and difficulty walking.

There are significant neurological complications of AIDS. HIV and AIDS can cause HIV-
associated dementia or AIDS dementia complex, two conditions that seriously affect
cognitive function.

Toxoplasma encephalitis, caused by a parasite commonly found in cat feces, is another

possible complication of AIDS. With a weakened immune system, having AIDS puts you at
an increased risk of inflammation of the brain and spinal cord due to this parasite.
Symptoms include confusion, headaches, and seizures.

Some common complications of AIDS include:

 memory impairment

 anxiety

 depression

In very advanced cases, hallucinations and frank psychosis can occur. You may also
experience headaches, balance issues, and vision problems.

Integumentary system

One of the more visible signs of HIV and AIDS can be seen on the skin. A weakened
immune response leaves you more vulnerable to viruses like herpes. Herpes can cause you
to develop sores around your mouth or genitals.

HIV also increases your risk for rashes and shingles. Shingles are caused by herpes zoster,
the virus that gives you chickenpox. Shingles causes a painful rash, often with blisters.

A viral skin infection called molluscum contagiosum involves an outbreak of bumps on the
skin. Another condition is called prurigo nodularis. It causes crusted lumps on the skin, as
well as severe itching.

https://www.healthline.com/health/hiv-aids/effects-on-body#1

AIDS in the Caribbean

In 2009, approximately 240,000 people in the Caribbean were living with HIV. The only
other region in the world with such a high infection rate is in Africa, south of the Saharan
desert. There are many reasons the epidemic has hit the Caribbean so strongly. These
reasons include poverty, sexual partners, gender, and prostitution. In response to the high
number of people with HIV, the Caribbean government and people have responded with
ways to contain the spread of HIV, as well as to help those with the disease.
Where did HIV in the Caribbean Originate and Which Gender Has the Highest
Infection Rate?
It is impossible to trace back exactly where HIV began in the Caribbean. However, in 1982,
the first case of AIDS was documented in Jamaica. Soon after, infections of HIV were found
in homosexual and bisexual men living in Tobago and Trinidad. These first cases of
AIDS/HIV were seen mainly in men, but by 1985 both women and men were reporting
infections. Heterosexual sex is actually the leading cause of HIV/AIDS in the Caribbean,
disproving the often held belief that HIV/AIDS is a disease that only occurs in homosexual
or bisexual men. HIV currently infects more women than men, and the new cases of HIV
are occurring in a higher number of women than men. Besides Africa, the Caribbean is the
only place in the world where a higher number of girls and women (than boys and men)
have HIV.
In Which Age Group is HIV the Leading Cause of Death and Which Caribbean
Countries Are Most Affected by HIV/AIDS?
HIV is the main cause of death, in the Caribbean, in adults who are between the ages of 15-
44 years old. However, new HIV/AIDS infections have been decreasing, from 2001-2009.
Within the countries of the Caribbean, there are variations in the number of people infected
with HIV. The countries with the highest number of people suffering from HIV/AIDS include
Tobago, Trinidad, Haiti, Guyana, Bahamas, and Belize. In these countries, over 2% of the
population is infected with HIV. Barbados and Jamaica also have a high rate of HIV
infections, affecting around 1.5% of the population. Lastly, the HIV infection rate in Cuba is
less than 0.2% of the population, but still impacts a large number of people. Unfortunately,
despite the high numbers of people in the Caribbean with HIV, many people of the world do
not realize the Caribbean needs HIV/AIDS activism and support. The epidemic of
HIV/AIDS in the Caribbean is often forgotten because of the other areas of the world where
the disease is present, such as Asia and Africa
How Have Social Factors Increased The Spread of HIV/AIDS?
Social factors are a main component in how HIV/AIDS has spread throughout the
Caribbean. Unfortunately, those suffering from poverty are more likely to get an HIV
infection. This is due to their limited education, inability to read/write, and unemployment.
Other social factors that increase the spread of HIV/AIDS are inequalities between men and
women, and inequalities between heterosexuals and homosexuals. In many cases, the
public is not educated about HIV/AIDS which increases the spread of HIV/AIDS from lack
of basic prevention knowledge. Lack of understanding about the disease and fear can cause
discrimination against people who are currently suffering from the debilitating virus.
Discrimination also occurs when those infected with HIV are job hunting, looking for a
place to live, or wanting to be in a public area (like a park or bus stop).
Risk groups for HIV/AIDS?
Gender: Women
Caribbean women between the ages of 24-44 years old are more likely to get be infected by
HIV than men. In developing countries, women are more likely to get HIV (leading to AIDS)
because of their low position in society. A consequence of this is partially the increased risk
of rape, unprotected sex, and sexual violence against women and girls. Also, biologically,
semen contains more of the virus than vaginal fluids which causes more women than men
to become infected with HIV. The increased risk of unwanted sexual contact for women, and
the high risk of contracting HIV violates not only women’s’ physical bodies but their right to
a healthy life. In younger woman and, unfortunately, teenaged girls, prostitution is common
between these younger aged females and older males. This can cause increased risk of HIV
transmission, especially if the paid transaction does not involve using protection.

Sexual Preferences

HIV/AIDS is transmitted through sexual contact, and sexuality (as well as) sexual
preferences are important considerations. Most people believe HIV/AIDS occurs more often
in male homosexuals, which does occur, but the data proving statement remains unclear.
In terms of data, the percentages of HIV rates between men who have sex with men are
11.7%, 18%, and 33.6% in the Caribbean countries of Dominican Republic, Suriname, and
Jamaica respectively. The data might be skewed because many people are afraid of
admitting their sexuality because homosexuality remains illegal in many Caribbean
nations. The fear of laws preventing men from having sex with men has increased the
AIDS/HIV epidemic due to lack of education and fear over going to get tested for the
disease. Also, many homosexual or bisexual men are married to woman (or have sexual
relations with women) sometimes unknowingly causing the spread of HIV.
Which Cultural Factors Influence HIV Transmission?
One major cultural factor influencing the transmission of HIV involves sexual patterns
within the culture. In other words, perhaps due to societal or cultural pressure, many of the
youth in Caribbean states report-having sex prior to 15 years old. The younger age can
increase the transmission of HIV, in addition to many people having more than one sexual
partner.
Prostitution and tourists traveling to the Caribbean for sex partners increases the risk for
HIV transmission. The increased risk and rate of HIV transmission is due to lack of condom
use, and at risk behaviors for those being paid for relations. Unfortunately HIV for sex
workers is very high, especially in Guyana (30.6%), Jamaica (9%), and the Dominican
Republic (5-12%).
Drug use can increase the risk of HIV infections, especially when needles are shared to
transmit drugs. This method of transmitting HIV is less likely to occur, compared to
transmission related to unprotected sexual content. The countries in which drug use is
often the main cause of HIV infection are Bermuda and Puerto Rico.

Economic impact

How Do Economic Factors Influence the Spread of HIV/AIDS?

The cost of HIV treatment is expensive for individuals infected with the disease. The
economy of the Caribbean can be affected by individuals in the workforce, or looking for
jobs, while infected with HIV/AIDS. Due to disease progression and lack of proper
treatment, there are less workers due to death from HIV/AIDS or severe illnesses resulting
from the disease. The industries affected by the HIV/AIDS epidemic include farming,
tourism, industry, and others. Individuals in poverty are at a greater risk for AIDS/HIV for
many reasons. These reasons include no information about what causes HIV/AIDS. An
individual, unaware of the risks, will be less likely to get work if suffering from HIV/AIDS.
This will lead to increasing health problems because of lack of funding for medication or
other treatment the individual needs to survive. Unfortunately, there is a vicious cycle
where lack of education leads to poverty which causes health problems or risky behaviors
and finally results in diseases like HIV. Once an impoverished poor individual has HIV, the
economic impact is greater because of the social stigma surrounding the disease. The fear
or prejudice against people with HIV/AIDS can lead to a lack of jobs, and eventually an
overall economic decrease for Caribbean countries.

Examples by country

HIV and AIDS in Haiti

How has Haiti been Affected by HIV/AIDS?

About 3% of the adult population of Haiti is infected with HIV/AIDS. The disease was
thought to have begun due to prostitution between male tourists and local Haitian men.
However, the disease easily became transmitted to females and heterosexuals. The cause of
the transmission to heterosexuals was due to HIV in blood transfusions and unprotected
sex. Unfortunately, in addition to unprotected sex causing HIV/AIDS, many children were
born to females who had HIV. Other diseases, such as tuberculosis, can be deadly to
individuals already suffering from HIV/AIDS. Luckily, the observant doctors and nurses of
the health care system swiftly identified HIV/AIDS as causing major health problems
among people who lived in Haiti. Immediately the Haitian Red Cross screened blood
transfusions for HIV/AIDS. Also, people with AIDS/HIV were able to obtain antiretroviral
medications. The Haitian Red Cross and other health care organizations provided national
education and awareness about HIV/AIDS. Along with other preventative measures, Haiti
is addressing the epidemic of AIDS/HIV with success, and hopefully this will mean a
promising future decrease in the spread of the disease.
HIV and AIDS in Barbados
How Is Barbados Affected by HIV/AIDS?
Compared to Haiti, less people in Barbados have HIV, but the percentage is still high at 1.5
percent of the adult population. In the early 1980s, HIV cases were being diagnosed in
Barbados. Barbados HIV/AIDS prevention is different than the prevention in Haiti. In
Barbados, the government helped people with HIV/AIDS, and in Haiti the help was from
non-government controlled agencies. The government provided a center for information
about HIV/AIDS (education), widespread testing, and confidentiality to prevent bias or
negativity. The Barbados government has helped the people of Barbados during the
HIV/AIDS epidemic. This is impressive because the government’s help began during a time
of economic problems and negative attitudes toward people infected with HIV/AIDS.

HIV and AIDS in Jamaica

How Has Jamaica Been Affected By The HIV/AIDS Epidemic?

Similar to Barbados, the rate of the adult population with HIV/AIDS is 1.5 percent in
Jamaica. Jamaica is different than Barbados because young women and young female
children (14 years old) are dying from AIDS (due to HIV). The number one cause of death in
young women and girls in Jamaica is AIDS. As with other countries of the Caribbean,
luckily, the government and private healthcare companies have helped those with
HIV/AIDS. The government wants to lower the negative attitude toward people who have
HIV/AIDS. Also, the government and private health care systems have focused on providing
condoms, screening blood for disease (blood donations), and increasing the number of
treatment facilities. More measures are needed to help people of Jamaica fight AIDS/HIV,
but the government has provided a great starting point.

HIV and AIDS in Cuba

Is HIV/AIDS Common in Cuba?

The rate in Cuba is 0.07 percent, which is low compared to the rest of the Caribbean
region, but prevention of HIV/AIDS is still needed. Interestingly, the first cases of HIV/AIDS
in Cuba occurred in men who were heterosexual, most likely due to unprotected sex. Then,
the disease began to appear in homosexual men. Unfortunately, today in Cuba, homosexual
men are likely to get HIV/AIDS when condoms are not used. In Cuba, HIV/AIDS is mainly
transmitted through un-safe sex, and not through blood transfusion or drug use.
In Cuba, the government and private organizations, created the Working Group For
Confronting And Fighting AIDS. This group was the beginning of Cuba’s fight against
HIV/AIDS. To protect Cubans from blood infected with HIV/AIDS, blood products are
carefully screened. Additionally, health care centers were developed for HIV-positive
patients to obtain education and health care appointments.

Recent Responses to the HIV/AIDS epidemic in the Caribbean

More recently, the Caribbean has joined together to stop the HIV/AIDS epidemic and make
defeating the spread of the disease a priority. The Caribbean countries have come together
and formed the Pan-Caribbean Partnership Against AIDS (PANCAP). This organization
unites the Caribbean region and makes a difference in the lives of those with HIV/AIDS.
PANCAP realizes the harm of a negative attitude toward people suffering from HIV/AIDS.
Taking control of the disease involves changing the negative attitudes and focusing on
providing HIV-positive people the care they need. Also, the organization wants to educate
the people of the Caribbean and provide medical treatment for those who are HIV-positive.
The Caribbean countries have provided help to those with HIV/AIDS by decreasing the cost
of medication and making it easier to obtain disease treatment. HIV in children from
mothers has been lowered due to providing testing. Aex-education and greater access to
birth control are two other methods being used to lower the risk for HIV/AIDS in the
population.

Future and Current Challenges To Preventing HIV/AIDS

There are huge improvements being done by the governments of Caribbean countries, but
there are still problems controlling the spread of HIV/AIDS. One problem is the lack of
money countries have to provide medicine and other resources to those with the disease.
Also, problems with technology and communication between the countries hinder proper
education on the causes of HIV/AIDS to prevent the spread of infection. Politics and society
in some countries still view those with HIV/AIDS negatively. It’s important to remember
diseases are complex processes (especially HIV/AIDS) and more medical and nursing
research needs to be done to find out ways to decrease the disease rate among Caribbean
countries. Overall, all people who are suffering from HIV/AIDS need to be shown
compassion, respect, and care.

tp://www.medwiser.org/hiv-aids/around-the-world/aids-in-the-caribbean/

http://www.poemsearcher.com/topic/hiv+Poems#&gid=1&pid=10
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HIV Stigma and Discrimination

KEY POINTS:

There is a cyclical relationship between stigma and HIV; people who experience stigma and
discrimination are marginalised and made more vulnerable to HIV, while those living with
HIV are more vulnerable to experiencing stigma and discrimination.

Myths and misinformation increase the stigma and discrimination surrounding HIV and
AIDS.

Roughly one in eight people living with HIV is being denied health services because of
stigma and discrimination.

Adopting a human rights approach to HIV and AIDS is in the best interests of public health
and is key to eradicating stigma and discrimination.

Explore this page to find out why stigma around HIV and AIDS exists, how stigma affects
people living with HIV, how stigma affects key populations, how stigma affects the HIV
response, forms of HIV stigma and discrimination, and ending HIV stigma and
discrimination.

HIV-related stigma and discrimination refers to prejudice, negative attitudes and abuse
directed at people living with HIV and AIDS. In 35% of countries with available data, over
50% of people report having discriminatory attitudes towards people living with HIV.1

Stigma and discrimination also makes people vulnerable to HIV. Those most at risk to HIV
(key affected populations) continue to face stigma and discrimination based on their actual
or perceived health status, race, socioeconomic status, age, sex, sexual orientation or
gender identity or other grounds.2

Stigma and discrimination manifests itself in many ways. Discrimination and other human
rights violations may occur in health care settings, barring people from accessing health
services or enjoying quality health care.3 Some people living with HIV and other key
affected populations are shunned by family, peers and the wider community, while others
face poor treatment in educational and work settings, erosion of their rights, and
psychological damage. These all limit access to HIV testing, treatment and other HIV
services.4 5
The People Living with HIV Stigma Index documents the experiences of people living with
HIV. As of 2015, more than 70 countries were using the HIV Stigma Index, more than 1,400
people living with HIV had been trained as interviewers, and over 70,000 people with HIV
have been interviewed.6 Findings from 50 countries, indicate that roughly one in every
eight people living with HIV is being denied health services because of stigma and
discrimination.7

Why is there stigma around HIV and AIDS?

Whenever AIDS has won, stigma, shame, distrust, discrimination and apathy was on its
side. Every time AIDS has been defeated, it has been because of trust, openness, dialogue
between individuals and communities, family support, human solidarity, and the human
perseverance to find new paths and solutions.

- Michel Sidibé, Executive Director of UNAIDS8

The fear surrounding the emerging HIV epidemic in the 1980s largely persists today. At that
time, very little was known about how HIV is transmitted, which made people scared of
those infected due to fear of contagion.

This fear, coupled with many other reasons, means that lots of people falsely believe:

HIV and AIDS are always associated with death

HIV is associated with behaviours that some people disapprove of (such as homosexuality,
drug use, sex work or infidelity)

HIV is only transmitted through sex, which is a taboo subject in some cultures

HIV infection is the result of personal irresponsibility or moral fault (such as infidelity) that
deserves to be punished

inaccurate information about how HIV is transmitted, which creates irrational behaviour
and misperceptions of personal risk.9

How stigma affects people living with HIV

My daughter refused to go hospital to receive medicines. My daughter died because of the

fear of stigmatization and discrimination

- Patience Eshun from Ghana, who lost her daughter to an AIDS-related illness10

HIV-related stigma and discrimination exists worldwide, although it manifests itself

differently across countries, communities, religious groups and individuals. In sub-Saharan
Africa, for example, heterosexual sex is the main route of infection, which means that HIV-
related stigma in this region is mainly focused on infidelity and sex work.11

Research by the International Centre for Research on Women (ICRW) outlines the possible
consequences of HIV-related stigma as:

loss of income and livelihood

loss of marriage and childbearing options

poor care within the health sector

withdrawal of caregiving in the home

loss of hope and feelings of worthlessness

loss of reputation.12

HIV stigma and key affected populations

Stigma and discrimination is often directed towards key affected populations such as men
who have sex with men (sometimes referred to as MSM), people who inject drugs and sex
workers.

These people are increasingly marginalised, not only from society, but from the services
they need to protect themselves from HIV. For example, in 2016, 60% of countries in the
European Economic Area reported that health care professionals’ negative and
discriminatory attitudes towards men who have sex with men and people who inject drugs
hampered the provision of adequate HIV prevention services for these groups.13

More than 90% of new HIV infections in Central Asia, Europe, North America, the Middle
East and North Africa in 2014 were among people from key populations and their sexual
partners, who accounted for 45% of new HIV infections worldwide in 2015.14 Recent
studies suggest that, globally, people who inject drugs are 24 times more likely to acquire
HIV than the general population, sex workers are 10 times more likely and men who have
sex with men are 24 times more likely. Moreover, transgender people are 49 times more
likely and prisoners are five times more likely to be living with HIV than adults in the
general population.15
How stigma affects the HIV response

UNAIDS and the World Health Organization (WHO) cites fear of stigma and discrimination
as the main reason why people are reluctant to get tested, disclose their HIV status and
take antiretroviral drugs (ARVs).16

One study found that participants who reported high levels of stigma were over four times
more likely to report poor access to care.17 This contributes to the expansion of the global
HIV epidemic and a higher number of AIDS-related deaths.

An unwillingness to take an HIV test means that more people are diagnosed late, when the
virus may have already progressed to AIDS. This makes treatment less effective, increasing
the likelihood of transmitting HIV to others, and causing early death.

For example, in the United Kingdom (UK), many people who are diagnosed with HIV are
diagnosed at a late stage of infection, defined as a CD4 count under 350 within three
months of diagnosis. Although late diagnosis of HIV has declined in the UK in the last
decade, from 56% in 2005 to 39% in 2015, this figure remains unacceptably high.18

In South Africa, stigma stopped many young women involved in a trial on HIV prevention
from using vaginal gels and pills that would help them stay HIV free. Many reported being
afraid that using these products would lead them to being mistakenly identified as having
HIV, and so the fear of the isolation and discrimination that being identified as living with
HIV would bring led them to adapt behaviours that put them more at risk of acquiring the
virus.19
The epidemic of fear, stigmatization and discrimination has undermined the ability of
individuals, families and societies to protect themselves and provide support and
reassurance to those affected. This hinders, in no small way, efforts at stemming the
epidemic. It complicates decisions about testing, disclosure of status, and ability to
negotiate prevention behaviours, including use of family planning services. 20

In 2015, WHO released new treatment guidelines that reflect the need to address stigma
and discrimination as a barrier to accessing HIV treatment.21

Forms of HIV stigma and discrimination

HIV and AIDS-related stigma can lead to discrimination, for example, when people living
with HIV are prohibited from travelling, using healthcare facilities or seeking employment.

Self-stigma/internalised stigma

Self-stigma, or internalised stigma, has an equally damaging effect on the mental wellbeing
of people living with HIV or from key affected populations. This fear of discrimination breaks
down confidence to seek help and medical care.22

Self-stigma and fear of a negative community reaction can hinder efforts to address the HIV
epidemic by continuing the wall of silence and shame surrounding the virus. Negative self-
judgement resulting in shame, worthlessness and blame represents an important but
neglected aspect of living with HIV. Self-stigma affected a person's ability to live positively,
limits meaningful self agency, quality of life, adherence to treatment and access to health
services.23

In Zimbabwe, Trócaire and ZNNP+ designed, implemented and evaluated a 12-week pilot
programme to support people living with HIV to work through self-stigmatising beliefs. After
the 12 weeks, participants reported profound shifts in their lives. The majority of
participants (61%) reported a reduction in self-stigma, depression (78%) and fears around
disclosure (52%), and increased feelings of satisfaction (52%) and daily activity (70%).24

Evidence suggests people from key affected populations are also disproportionally affected
by self-stigma. For example, a study of men in China who have sex with men found that
depression experienced by participants due to feelings of self stigma around homosexuality
directly affected HIV testing uptake.25

Similarly, a study of men in Tijuana, Mexico who have sex with men found that self-stigma
was strongly associated with never having tested for HIV, while testing for HIV was
associated with identifying as being homosexual or gay and being more ‘out’ about having
sex with men.26

In countries that are hostile to men who have sex with men and other key populations,
innovative strategies are needed to engage individuals in HIV testing and care programmes
without exacerbating experiences of stigma and discrimination.

I am afraid of giving my disease to my family members-especially my youngest brother who

is so small. It would be so pitiful if he got the disease. I am aware that I have the disease so
I do not touch him. I talk with him only. I don’t hold him in my arms now.

- woman in Vietnam 27

Governmental stigma

A country’s discriminatory laws, rules and policies regarding HIV can alienate and exclude
people living with HIV, reinforcing the stigma surrounding HIV and AIDS.
In 2014, 64% of countries reporting to UNAIDS had some form of legislation in place to
protect people living with HIV from discrimination.28 While, conversely, 72 countries have
HIV-specific laws that prosecute people living with HIV for a range of offences.29

Criminalisation of key affected populations remains widespread with 60% of countries

reporting laws, regulations or policies that present obstacles to providing effective HIV
prevention, treatment, care and support.30 As of 2016, 73 countries criminalised same sex
activity,31 and injecting drugs use is widely criminalised, leading to high incarceration
levels among people who use drugs.32

More than 100 countries criminalise sex work or aspects of sex work.33 Even in countries
where sex work is at least partially legal the law rarely protects sex workers and many are
at risk of discrimination, abuse and violence from both state and non-state actors such as
law enforcement, partners, family members and their clients.34 For example, some 15,000
sex workers in China were detained in so-called custody and education centres in 2013.35

Case study: Ending criminalisation of HIV transmission in Australia

Laws that criminalise HIV non-disclosure, exposure and transmission perpetuate stigma
and deter people from HIV testing and puts the responsibility of HIV prevention solely on
the partner living with HIV.36

In May 2015, the Australian state of Victoria repealed the country’s only HIV-specific law
criminalising the intentional transmission of HIV. The repealed law - Section 19A of the
Crimes Act 1958 - carried a maximum penalty of 25 years imprisonment, even more than
the maximum for manslaughter (which is 20 years).37

The legislation to repeal the law was developed through the collaboration of several
stakeholders, including legal, public health and human rights experts and representatives
of people living with HIV. It was seen as a major step forward for the rights of people living
with HIV.38

Restrictions on entry, travel and stay

As of September 2015, 35 countries have laws that restrict the entry, stay and residence of
people living with HIV. In 2015, Lithuania became the most recent country to remove such
restrictions.39

As of 2015, 17 countries will deport individuals once their HIV positive status is discovered,
five have a complete entry ban on people living with HIV and four require a person to be
able to prove they are HIV negative before being granted entry.40

Deportation of people living with HIV has potentially life-threatening consequences if they
have been taking HIV treatment and are deported to a country that has limited treatment
provision. Alternatively, people living with HIV may face deportation to a country where they
would be subject to even further discrimination - a practice that could contravene
international human rights law.41

Healthcare stigma

Healthcare professionals can medically assist someone infected or affected by HIV, and also
provide life-saving information on how to prevent it.42However, HIV-related discrimination
in healthcare remains an issue and is particularly prevalent in some countries. It can take
many forms, including mandatory HIV testing without consent or appropriate counselling.
Health providers may minimise contact with, or care of, patients living with HIV, delay or
deny treatment, demand additional payment for services and isolate people living with HIV
from other patients.43
For women living with HIV, denial of sexual and reproductive health and rights services can
be devastating. For example, 37.7% of women living with HIV surveyed in 2012 in a six-
country study in the Asia–Pacific region reported being subjected to involuntary
sterilisation.44

Healthcare workers may violate a patient’s privacy and confidentiality, including disclosure
of a person’s HIV status to family members or hospital employees without authorisation.45
Studies by WHO in India, Indonesia, the Philippines and Thailand found that 34% of
respondents reported breaches of confidentiality by health workers.46

People from key affected populations may face additional discrimination in healthcare
settings. Discriminatory attitudes held by health providers may also lead them to make
judgements about a person’s HIV status, behaviour, sexual orientation or gender identity,
leading individuals to be treated without respect or dignity. These views are often fuelled by
ignorance about HIV transmission routes among healthcare professionals.47

Case study: Reducing stigma and discrimination among healthcare workers in Thailand

In 2012, half of all people living with HIV in Thailand were starting treatment very late and
had CD4 counts under 100. HIV stigma was identified as a major barrier to service uptake
so health authorities set a target to cut HIV-related stigma and discrimination by 50% by
2016. 48

The Ministry of Public Health found that over 80% of healthcare workers had at least one
negative attitude to HIV, while roughly 20% knew colleagues who were unwilling to provide
services to people living with HIV or provided them substandard services.49

More than half of respondents reported using unnecessary personal protection measures
such as wearing gloves when interacting with people living with HIV. 25% of people living
with HIV surveyed said that they avoided seeking healthcare for fear of disclosure or poor
treatment, while a third had their status disclosed without their consent.50

In response to these findings, the Ministry of Public Health, in collaboration with civil
society and international partners developed initiatives to sensitise healthcare workers in
both clinical and non-clinical settings.51

Early results in 2014 indicated that improving the attitude of healthcare workers doesn’t
just improve care for people living with HIV but has wider societal benefits as they are seen
as role models.52

As of 2017, Thailand had collected data from 22 provinces. The Thai Ministry of Public
Health is rolling out an accelerated system-wide stigma reduction programme, in
collaboration with civil society and concerned communities.53

A study of health providers in urban health facilities in India found 55-80% of providers
displayed a willingness to prohibit women living with HIV from having children, endorsed
mandatory testing for female sex workers (94-97%) and stated that people who acquired
HIV through sex or drugs "got what they deserved" (50-83%).54

These experiences may leave people living with HIV and people from key affected
populations too afraid to seek out healthcare services, or be prevented from accessing them
– for instance, if a nurse refuses to treat a sex worker after finding out about their
occupation. It also prevents many people from key affected populations being honest with
healthcare workers if they’re a sex worker, have same-sex relations, or inject drugs,
meaning they are less likely to get services that could help them.55
When I visited a VCT [voluntary counseling and testing] clinic, health personnel were not
polite and immediately asked me if I was a sex worker. A doctor asked me outright, ‘Are you
HIV positive?’ This discouraged me from going to the clinics.

- Payal, 18, Nepal 56

Employment stigma

In the workplace, people living with HIV may suffer stigma from their co-workers and
employers, such as social isolation and ridicule, or experience discriminatory practices,
such as termination or refusal of employment.57

Evidence from the People Living with HIV Stigma Index suggests that, in many countries,
HIV-related stigma and discrimination are as frequently or more frequently a cause of
unemployment or a denial of work opportunity as ill health.58

Key findings from people living with HIV in nine countries across four regions in 2012 found
that, as a result of their HIV status, between between 8% (Estonia) and 45% (Nigeria) of
respondents had lost their job or source of income; between 5% (Mexico) and 27% (Nigeria)
were refused the opportunity to work, and between 4% (Estonia) and 28% (Kenya) had the
nature of their work changed or had been refused promotion. In addition, 8% of
respondents in Estonia to 54% in Malaysia reported discriminatory reactions from
employers once they were aware of the employee’s HIV status. Similarly, 5% in Estonia to
54% in Malaysia reported discriminatory reactions from co-workers who became aware of
their colleague’s HIV status.59

It is always in the back of your mind, if I get a job, should I tell my employer about my HIV
status? There is a fear of how they will react to it. It may cost you your job, it may make you
so uncomfortable it changes relationships. Yet you would want to be able to explain about
why you are absent, and going to the doctors.

- HIV-positive woman, UK 60

By reducing stigma in the workplace (via HIV and AIDS education, offering HIV testing, and
contributing towards the cost of ARVs) employees are less likely to take days off work, and
be more productive in their jobs. This ensures people living with HIV are able to continue
working.61

Community and household level stigma

Community-level stigma and discrimination towards people living with HIV can force people
to leave their home and change their daily activities.

In many contexts, women and girls often fear stigma and rejection from their families, not
only because they stand to lose their social place of belonging, but also because they could
lose their shelter, their children, and their ability to survive. The isolation that social
rejection brings can lead to low self-esteem, depression, and even thoughts or acts of
suicide.62

The International Center for Research on Women (ICRW) reports that in Bangladesh more
than half of women living with HIV have experienced stigma from a friend or neighbour and
one in five feel suicidal. In the Dominican Republic, six out of ten women living with HIV
fear being the subject of gossip, while in Ethiopia, more than half of all women living with
HIV report having low self-esteem.63

They [my family] were embarrassed and didn’t want to talk to me. My mother essentially
said, ‘Good luck, you’re on your own.’

- Shana Cozad from Tulsa, USA, on her family’s reaction after she tested positive for HIV.64
A survey of married HIV-positive women (15–29 years) in India found 88% of respondents
experienced stigma and discrimination from their family and community. Women with older
husbands and from household’s with lower economic status were significantly more likely
to experience stigma and discrimination from their husbands’ family as well as from friends
and neighbours.65

Stigma and discrimination can also take particular forms within community groups such as
key affected populations.

For example, studies have shown that within some lesbian, gay, bisexual, transgender and
intersex (LGBTI) communities there is segregation between HIV-positive and HIV-negative
people, where people associate predominately with those of the same status.66 67

Ending HIV stigma and discrimination

The use of specific programmes that emphasise the rights of people living with HIV is a well-
documented way of eradicating stigma. As well as being made aware of their rights, people
living with HIV can be empowered in order to take action if these rights are violated.68

Ultimately, adopting a human rights approach to HIV and AIDS is in the public’s interest.
Stigma blocks access to HIV testing and treatment services, making onwards transmission
more likely. The removal of barriers to these services is key to ending the global HIV
epidemic.69

In March 2016, UNAIDS and WHO’s Global Health Workforce Alliance launched the Agenda
for Zero Discrimination in Healthcare. This works towards a world where everyone,
everywhere, is able to receive the healthcare they need with no discrimination, in line with
The UN Political Declaration on Ending AIDS.70 Zero discrimination is also at the heart of
the UNAIDS vision, and one of the targets of its Fast-Track response. This focuses on
addressing discrimination in healthcare, workplace and education settings.71

As part of this work:

A virtual community of practice, Equal Health for All, has been created to facilitate the
sharing of communication, collaboration and experiences in implementing the action plan.
Over the year, its membership grew to more than 160 members from more than 70
organisations.72

In Malawi, the National Association of People Living With and Affected by AIDS, in
partnership with Airtel Malawi and UNAIDS, is using an SMS-based reporting system to
provide real-time monitoring of experiences of stigma and discrimination faced by people
living with HIV in the healthcare sector.73

In Argentina, 21 service centres friendly to LGBTI people aim to increase the accessibility
and acceptability of health services for key affected populations. Healthcare professionals
have been trained on the specific healthcare needs of LGBTI people as well as on non-
discrimination, accessible opening hours, and the active involvement of LGBTI people in the
design and functioning of services.74

In 2016, Kenya reaffirmed its commitment to end HIV-related stigma and discrimination by
embarking on a national ‘Kick out HIV stigma’ campaign. This aims to leverage the power of
football to mobilise young people to end HIV stigma and link them to stigma-free HIV
testing, treatment and care.75

Case study: Strengthening the rights of people living with HIV in Ghana

Although Ghana’s Constitution protects all citizens from discrimination in employment,

education and housing and ensures their right to privacy, there is ambiguity in the way
these provisions apply to people living with HIV and to key affected populations.76
The Patients’ Charter protects people living with HIV from discrimination within the
healthcare system, but they are difficult to enforce outside of public health facilities. In
addition, consensual sex between adult males and sex work is criminalised, deterring sex
workers and men who have sex with men from seeking healthcare services.77

To overcome these obstacles, a web-based reporting mechanism was launched in December

2013. People living with HIV can directly report to the Commission by SMS or through the
reporting system’s website, and they can choose to remain anonymous. This triggers an
investigation involving human rights organisations and lawyers.78

By September 2015, 32 cases of discrimination had been recorded, and 13 of them have
been resolved. Complaints have included violence, blackmail and denial of employment,
healthcare and education.79

However, a study of the implementation of the Charter at a sample of clinics found that,
while healthcare staff were aware of the existence of the patients’ Charter and also knew
some of its contents, the majority of patients had no knowledge of either the existence or
the contents of the Charter and were therefore unable to utilise it to tackle experiences of
stigma and discrimination in healthcare settings.80

https://www.avert.org/professionals/hiv-social-issues/stigma-discrimination