Tolkun Mambetova and Svetlana Lim, program specialist for the UNDP / Global Fund Project, explain in this blog what is stigma, and why it is hindering our fight against TB and HIV.
We always listen with a heavy heart to our patients when they say, for example, that they would have preferred having cancer, not tuberculosis, because of stigma. A lot of patients are ashamed that they are sick with TB or HIV. They don’t want their friends, their neighbors, or even their relatives to know about their diagnosis. They’re scared to go to the clinic every day to receive their treatment because someone might recognize them. They’re scared to share their pain, their emotions, to ask for help – all of this because of stigma. Cancer can be much harder to cure than tuberculosis, but when you have a cancer, people show empathy and help you out. But when you have TB and HIV, people on the contrary outcast you, blame you, judge you and are scared of you. And this all happens exactly at a moment in your life when you above all need care, support and love.
Stigma and discrimination cause late diagnosis and treatment interruptions. That’s why we can only stop HIV and TB when we stop stigma and discrimination.
What is stigma?
Everyone is different, but most of these differences don’t have a great significance (passport number, eye color, having the flu…). But if people start stigmatizing, this means that they consider differences to be important and to have a social significance (that is sometimes the case, for example, with HIV+ status, skin color, sexual orientation…). And this difference is used to separate people in different categories (for example black and white, blind and sighted, people living with HIV and people who don’t have HIV…)
Stigma is the process of imposing a negative social position or label to a person or a group. This is an extremely strong label which significantly changes the attitude of society towards a person, a group, or towards oneself.
For example, we know a few young women who fell sick with tuberculosis and whose husbands divorced because of the diagnosis, thinking that their wife wouldn’t be able to bear a healthy child, for example, or because they were simply ashamed that their wife had TB.
According to several studies, there are three main rules to stigma:
1. Differences between people are emphasized and considered to be significant
2. People with differences are credited with negative qualities
3. People are separated into “us” and “them”
Often stigma concerns people who are rejected from the society, that is people of low income, representatives of minority groups, men who have sex with men, people who inject drugs, sex workers, people living with HIV, or patients who have tuberculosis, among others.
The differences are turned into something negative, for example: “all people with HIV are dangerous”; “HIV+ people want to infect others”; “it’s shameful to have TB”. People who are united by only one criteria (for example, a disease) are all wrongly associated with an attitude or a quality that is in no case linked to this criteria: danger for others, desire to harm, amorality…
Stigma against people living with HIV and TB patients
Around the world, stigma and discrimination lead to low demand for medical services for the prevention, testing and treatment of HIV and TB.
Stigma and discrimination negatively impact patient’s readiness to disclose their status with partners, medical workers and relatives. And it causes a delay or refusal to seek for medical services due to fear of lack of confidentiality. Stigma and discrimination lead to irregular intake of ARV or anti-TB treatment. Because they fear being seen, patients hide their pills, and take them less systematically and timely than they should. And still because of stigma, many contacts are not aware that they were exposed to the disease and that they should get tested.
We remember the case of a one-year old boy who stopped walking and fell very sick. His parents went from doctor to doctor, and all gave him different diagnoses and painful treatments. But after one year, his condition kept worsening. It turned out the boy had a very difficult form of XDR-TB (extensively drug-resistant tuberculosis) that had been diagnosed late, just because his parents weren’t aware that one of their relatives had TB, and hence hadn’t been able to warn doctors.
Another example: a young woman with her baby was waiting for a consultation at an AIDS center. An older woman in front of anyone started judging her, saying that she had probably cheated on her husband, that’s why she was sick. That's not a fact , since there are other ways of getting HIV (sexual contact , through blood and from mother to child).
And it wasn’t any of her business anyway… But what do you think, will the young mother come back to get consultation and treatment?
During the emergency state and emergency situation in our country due to the Covid-19 pandemic, representatives of several groups suffered from increased stigma. For example, upon distribution of humanitarian aid for families in need, district managers refused to give out food to sex workers, although they had children to feed and no revenues. People taking the methadone substitute treatment weren’t able to get through roadblocks in Osh, although they had a certificate from the rehabilitation center.
Too often, stigma and the discrimination that comes with it are transferred to relatives of the person in question, including to their children. Children are called “an HIV child” or “drug addict child”, and we hear parents say “beware of him” or “isolate him from our children”. If a child’s parents are sick with HIV or TB, in many cases other children’s parents won’t allow their children to play with him/her, even if this wouldn’t harm their health in any way.
Self-stigmatization and refusal to get treated
Tuberculosis is curable, and it’s now possible to live a normal life with HIV thanks to timely diagnostic and treatment. But these diseases become much more dangerous if they are diagnosed late, or if treatment isn’t taken correctly, which is often the case because of the high level of stigma.
There is also a problem with self-stigmatization – when a person belongs to a stigmatized group and changes their attitude towards themselves. People living with HIV, people who inject drugs and other key population groups suffer from low self-esteem, low self-confidence and loneliness. They often feel powerless. For example, because of self-stigma, people who inject drugs may not reach out for help and receive timely information about potential support and lowering risks.
A person may think that he/she does not deserve treatment, and just give up on themselves. Many patients stop the treatment that could have saved them and returned them to their families because of stigma and loneliness. When a person is sick, what they need the most is support. They need to feel that they are loved, needed, and that they are important to others. Only then will that person want to live, to get back on their two feet, to fight and to take treatment, however difficult it may be. But stigma, on the contrary, leaves a person alone with their illness and their dark thoughts.
During the emergency state due to Covid-19, there were also many cases of domestic violence against people from key population groups, as reported to us human rights defenders working with our clients. Public defenders and lawyers document cases of rights violations, conduct legal consultations and protect the rights of these vulnerable groups. Domestic violence is one of the manifestations of stigma and discrimination and is a clear example of human rights violations. It can also be considered as a hate crime and be documented by public advocates. Victims of violence will receive legal support, and women from key populations who are victims of violence, including domestic violence, can seek temporary refuge, psychological and legal support at the “Asteria” Foundation in Bishkek and “Podruga” Foundation in Osh.
How to stop stigma?
Stigma develops because of lack of knowledge, which leads to the creation of fears and myths. When a person is scared, for example of getting HIV, because they do not know how it is transmitted, they try to put a physical and psychological barrier between themselves and people living with HIV. To stop stigma and discrimination, we need to:
Raise awareness among the population on stigma and discrimination linked with HIV, TB, drug usage etc.
Share correct information on HIV, TB, and others.
Organize seminars on stigma reduction with the participation of key population groups and society
Encourage the adoption of laws protecting human rights
Create a free “hot line” to enable people to receive information and denounce facts of discrimination
Provide free legal services to people from key population groups
Share positive stories of patients and show the example by publically supporting patients.
Now the Covid-19 pandemic is provoking stigma and discrimination in our societies against members of certain ethnic groups, and against people who were in contact with patients, including medical workers. How many times have we heard stories of doctors whose neighbors wanted them to move out?
But Covid-19 is a curable disease which means that stigma linked to this disease should only be temporary. It’s hard to imagine what people who live with HIV have to go through, since HIV lasts a lifetime. We all need to put ourselves in their shoes to understand to what extent stigma can be destructive. Maybe it will help us change our attitude towards others and accept that we are all different, but have equal rights and obligations.
And we need to remember that anyone can get HIV, TB or Covid-19. Your support and understanding can save many lives and increase the life quality of patients and key population groups. Every one of us can be that person who voluntarily or involuntarily treats someone with prejudice. So let’s stop stigma and start, first of all, with ourselves!