16/11/2020 | Writer: Defne Güzel
There used to be tutelage in the HIV field. The main actors, that is, those living with HIV, the subjects of HIV were not visible.
In our “AIDS in Syringe” article series, today, our guest is Muhtar Çokar. He is one of the pioneers of HIV activism in Turkey, while combining his advocacy studies with his medical profession. He has been working for the Human Resource Development Foundation (İKGV) for 25 years.
We discussed with Çokar about the history of HIV activism in Turkey, stages in this activism, Women’s Door under the HRDF, political changes in the HIV movement and the rise of conservatism.
You have more than twenty-five years of experience on the issue of HIV. With this perspective, you divide the HIV into some historical stages. Can you inform us about these stages?
I have been working at the Human Resource Development Foundation for twenty-five years. This periodization is a result of my observations and experience in the field as a NGO professional and physician. Of course, we can divide it into completely different historical stages with other perspectives. For example, a person living with HIV will likely view the process very differently and view the whole process as a history of stigmatization, discrimination, and the struggle to access services. In 25 years, I have witnessed a part of the responses provided to HIV in Turkey within thirty-five-year history of HIV. While working in the field of prevention and advocacy on HIV, I have witnessed the values changing over time in the field, and this change sometimes occurred as the whole system of values evolved or transformed into another system. The starting point behind the fact that I divide the responses on HIV into stages is that I have witnessed this transformation. Of course, this periodization is not in line with historical or a scientific study, rather with the sole observations of a NGO worker. That is why I think it should be evaluated with tolerance. There may be of course some wrong parts need to be corrected.
1981 was the year when the first cases were identified in the world. Until 1985, there were no cases of HIV in Turkey. This interval is a period before stages. In this era, HIV infection is slowly entering Turkey's agenda. HIV infection is starting to be recognized due to the cases in other countries and especially in the USA. The discriminations that will accompany HIV are planted in this period with the spread of the information that HIV is a disease of homosexuals.
The period that can be accepted as the first stage can be argued to be initiated in 1985 with two HIV cases identified in Turkey. This stage is the period of tutelage in which the main actors are the media and physicians. Those living with HIV, which we can call the subjects of HIV, are not in the foreground. At this stage, the discrimination in the media is very intense, and the prejudice that HIV is a homosexual disease is highlighted in almost every news. In a sense, physicians are in the foreground because they offer treatment. At this stage, I was the part of the discriminating party as a physician. There was a fear and lack of knowledge in all of us. While we were in the very beginning of the HIV epidemic process in Turkey, we were more interested in the sensational aspects of the study; we showed less effort to control the outbreak.
Even though LGBTI+ persons are a minority in the population living with HIV, the emphasis was on that HIV infection is a homosexual disease. This emphasis caused the LGBTI+ movement to approach prevention efforts cautiously and to some extent prevented individuals from accessing diagnosis and treatment opportunities. Those living with HIV did not have a say in their own rights, and they faced major obstacles in accessing healthcare services. Specific treatment against HIV infection was very expensive. Persons had to take drugs having a lot of side effects, and these had more side effects than the drugs of our time. Even if HIV treatment could be covered by social security system, there was resistance in official institutions. Treatment of other diseases of persons living with HIV was a problem. Generally, clinics avoided providing services to persons living with HIV. For an ordinary disease, finding a place for surgery, giving birth, having dental treatment was a complete problem. We were witnessing very serious consequences of delays in treatment, including deaths.
This stage is also the stage where the Ministry of Health takes the first measures. Preoperative compulsory tests, blood checks, disposable syringes came to the fore at this stage. By evaluating those times, it is possible to say that this stage was a period of opportunities, but it is not used well. In societies like ours, where the rate of increase of the disease is low, that is, the epidemic is slow progressive, prevention efforts at this stage are very important. It is also important that the groups we call key groups to have safe behaviors in terms of HIV. The behavior of these groups needs to be monitored with scientific research methods we call surveillance, and it is necessary to decide what to do for prevention. For example, if persons who inject drugs change syringes and face discrimination, the programs on syringe change and on fighting discrimination against them should be initiated and these persons should be admitted to healthcare services. In terms of safe sexual behavior, it is very important to implement such studies for different groups and for providing support to such groups.
When and how did the second stage start?
In 1991, the second stage started. I call this stage as the "social response". I think the fact that non-governmental organizations became one of the important actors and my involvement in the field through this channel at this stage was determinative in this definition. The second stage can also be defined as the civilianization of the field. In other words, the replacement of the leadership of media and science of medicine by non-governmental organizations. In the first stage, non-governmental organizations active in the field were NGOs stating that they mostly worked in the field of reproductive health. Although they acknowledge that sexually transmitted infections are an important part of the reproductive health field, HIV was not the top priority agenda item for them. Even the most fundamental activities such as access to services for persons living with HIV, working with key groups, and combating discrimination were out of the question. One of the prominent features of the second stage was non-governmental organizations that had specific studies towards HIV in this period. We know that the Association for the Fight Against AIDS (AMD) was established in Izmir in 1991 and the Association for Battle Against AIDS (ASD) was established in 1992 in Istanbul. These two were non-governmental organizations working directly against HIV infection. Although the two associations were very different from each other in terms of functioning and structure, the presidents of both were academicians who had a great influence on the Ministry of Health. Especially ASD was a prestigious association where all physicians tried to become a member. They had 17 branch offices across Turkey. These associations worked for both prevention and for ensuring access of persons living with HIV to services. The voices of those living with HIV had been raised up by these NGOs to a large extent, and advocacy was done via these NGOs. The AIDS and Sexually Transmitted Diseases Association established in Izmir and Hacettepe University HIV-AIDS Treatment and Research Center (HATAM) within Hacettepe University were among the effective NGOs of this period. The first pioneering study in the field of prevention also started at this stage. The prevention activities of NGOs in the field for young persons and the general public, and the study of the Human Resource Development Foundation, of which I am an employee, for sex workers took place at this stage. Studies were carried out largely using international funds. We recognized UNAIDS, a unit of the United Nations, the European Union (EU), and later The Global Fund, as granting organizations in the second stage, instead of USAID of the first stage- the USA aid organization that was more active in the field of reproductive health.
National AIDS Commission was founded under the leadership the Family Planning Association of Turkey via the EU funds. The Commission performs as an important institution in building communication between the public and civil fields while planning Turkey's response to HIV for a period. Although the belief in the previous stage on that the epidemic will spread in a short time prevailed at this stage, the rate of the epidemic remained low in this period, although the numbers started to increase. One of the positive developments of the second stage is the emphasis on working with key groups. Even today, even though a developed HIV-specific epidemic monitoring mechanism, namely surveillance system has not been established, the importance of key groups has been understood in the second stage. Now we are calling it as the key group, but at that time we called it as the risky group, then we realized that the group is not at risk, then we started to call it as a vulnerable group at risk. One of the important factors in the spread of HIV, groups that change partners a lot but do not engage in safe sexual behavior, namely key groups, gained importance. Priority was given to programs that support the prevention of discrimination against these groups, and the access of individuals to prevention, diagnosis and treatment opportunities. The first test centers were established during this period. The support provided largely by the European Union and The Global Fund ended by 2008. Although the epidemic started to accelerate after this date, the National AIDS Commission was not convened, HIV started to be disregarded from the priorities of the Ministry of Health, NGOs lost their effectiveness and the interest in the society started to decrease.
How do you describe the third stage you said before we are now in?
The third stage we are now in can be monitored as a apathy period after 2008. This is a period that no one cares about as the numbers are rising. At this stage, positive groups started to appear in the field. Although some of them were founded at the end of the first stage, the associations such as Positive Life, PODER, and Pozitif-iz began to be active in this period. Those living with HIV began to take part in the response to HIV as active subjects. Those living with HIV started to raise their voices up without intermediaries. Physician-based associations were closed down during this period. The number of studies made with key groups has decreased. As an important and positive development, new actors started to take an active role in the response to HIV in the new stage. LGBTI+ organizations, which occasionally made room for prevention activities, albeit tacitly in previous periods, started to openly make HIV a part of their problem areas. This is a very positive thing. Kaos GL is a pioneering organization in this regard. During this period, sex workers also had organizations worrying about the prevention of HIV. Today, the number of persons diagnosed is increasing, the epidemic has started to accelerate, and despite this, the priority ranking of HIV/AIDS programs in Ministry of Health still low, society's interest has decreased, prevention efforts are not at the desired level, key groups are neglected. That means the issue has become serious, but we are not interested in. However, compared to the past, persons living with HIV have more easy and widespread access to treatment services, there are treatment protocols prepared by the Ministry of Health, access to drugs is very common and easy compared to the past, anonymous test centers are taken seriously and there is request for increasing the number of these centers. Of course, there are also the effects of transformations in life itself. For example, working conditions of sex workers have changed. Technological advances that facilitated the change of partners began to override traditional methods of prevention studies. These developments also affect our system of values and remind us the need to re-evaluate the whole picture.
There is a process that evolves into the Women’s Door in the key group studies you mentioned. How was this process developed and how was your motivation during this process?
The Women’s Door was a project we started after the Cairo Conference on Population in 1994. The Cairo Conference on Population is a meeting that teaches us that there is more in reproductive health field than reproduction. In 1996, we launched our program that supports sex workers to gain safe sexual behavior. It was a time to work with key groups, and one of these groups was sex workers. At that time, we were always reaching the women within the scope of family planning projects. We thought that sex workers would easily support our study since HIV is an important problem for them, but we hit the brick wall there. For sex workers, their health status was not at the top of their agenda. Sex workers, most of who were working under unsafe conditions, were not in a position to negotiate for a condom. Stigmatization, exclusion and discrimination were at their highest levels. They were not in a position to care about our training. Then we somehow communicated, met with them. The social lives of sex workers had to be supported first. That is why we established a community center. In addition to healthcare studies, we have worked to support sex workers on how to access legal support and cope with violence. We named the center we established as the Women’s Door. We moved a lot. For a while, we even made the Women’s Door mobile and bought a minibus and delivered it to the streets where sex workers work.
The Women’s Door started to develop gradually. We decided with friends that it should be institutionalized in line with its own needs and the Women’s Door became an association. Studies have gradually evolved from healthcare and support studies into advocacy. As it is now, hatred towards transgender identities reached murder levels, and the prevention of hate crimes became the goal in itself. Still, it could not have a long-term life as an association. Although Women’s Door has a mixed structure for sex worker cis and trans woman, ciswomen have become a minority and their participation has gradually decreased. The developments in the third stage ultimately affected us too. During this period, HRDF's policies and direction also changed and new priorities came into play, especially with the refugee influx. Meanwhile, the sex work experience has also changed. Sex work has started to gain a digital quality that is carried out via the internet. In the past, it was possible to reach sex workers in physical places, but digital environments started to gain importance. Years later, when we evaluated the effectiveness of the Women’s Door, we saw that among the key groups we could reach via Women’s Door, the group with the least HIV spread was sex workers. These studies were carried out by sex workers. Success is of course their success.
Besides your HIV studies, how has your political approach to the HIV issue evolved?
Our starting point as a foundation was not political but medical. Despite this, we found a political group with us. Sex work is a political field, although its subjects are often unconscious about this nature of it. Sex work is a survival strategy in some cases, and society meets this strategy of sex workers with a counter strategy. Sex workers are accused of taking the easy way out, of immorality, and this situation turns into a political struggle. We came across the moral values of the society at first. We have been accused of supporting sex work. However, we did not have such a motive. The persons we supported were sex workers. Moral values are easy to resist, but there are more serious problems. Especially transgender persons have a struggle for existence. In the process, the problems of transgender persons have inevitably become our problems. The Women’s Door has done advocacy from time to time. In fact, HIV prevention has become a small part of the program over time.
The political aspect of HIV is even richer. We have known this from the very beginning. Still, those living with HIV are not a homogeneous group. They can come together in advocacy for access to treatment, but they are not united in themselves. In this sense, it is not easy to evaluate the political environment on the HIV issue. Because private life is also a matter of politics, how the state intervenes in persons is also a matter of politics. Discrimination, not being hired, the difficulties created by private insurances for HIV-positive persons are all a matter of politics. It is necessary to understand, evaluate and resolve them.
What kind of political changes do you observe in the HIV movement from past to present? How was conservatism reflected in the HIV movement?
There used to be tutelage in the HIV field. The main actors, that is, those living with HIV, the subjects of HIV were not visible. Over time, HIV became an issue of political subjects; the tutelage of physicians is ended. This is an important thing. The number of organizations is low. The number of positive organizations and sex workers' organizations should increase. As a positive example, LGBT + organizations can talk about HIV much more comfortably. I think this is also very important.
Conservatism has always existed, but its shape has changed. For example, there is no change in their view of LGBTI+ persons. There is no change in the perception of sex workers. Also, there is no policy to make things positive. This conservatism politically brought the National AIDS Commission to an end. Studies on key groups have ended. We can see the negative effects of conservatism here. On the other hand, the progress of science was followed to some extent and it became easier to get a diagnose and reach medicine than the past years. At this point, we can also see the positive studies carried out by the Ministry of Health. The Ministry of Health, which organizes and carries out the provision of treatment services, is the most important actor in this field. The standardization of treatment, widespread and accessible treatment services, easier access to medicines, and even the reflection of the developments in the world to our country in a short time were realized by the Ministry of Health. Ministry of Health was published HIV/AIDS Control Program in Turkey (2019-2024) in 2019.
What kinds of activities should be conducted to prevent the discrimination against those living with HIV? What gains has the HIV movement had despite the conservatism we mentioned?
Twenty-five years ago, it was considered a disaster for persons living with HIV to disclose their status, if they were accidentally diagnosed, there were difficulties in accessing drugs, they were excluded from healthcare institutions regarding their other healthcare problems, HIV infection and AIDS were already a "homosexual disease", and these persons should also be excluded from the society. I think access to health is getting better now. HIV infection is on the way to be normalized. Healthcare institutions and the media have an impact on this. There are many things that can be done on social media. Since this started in the media and it may be possible to prevent discrimination via the media.
Also, the dynamics have changed. There used to be just supports provided to sex workers. Now they are organizing. Anonymous test centers were opened and access to treatment increased. HIV may not be a priority in healthcare policies, but still, effectiveness and inclusiveness in treatment and limiting the epidemic have been an important achievement. In this sense, it is a very important factor that policies for PrEP and PEP come to the agenda.
Finally, is there anything else you would like to add?
It is important to identify and disclose discrimination. It is important to disclose these discriminatory behaviors for supporting public health. The more persons who have risky behaviors get tested and access treatment services without discrimination and exclusion, the more successful the prevention of the epidemic will be.
Translation: Özge Gökpınar
Tags: human rights, health