Limited access to medication for Indonesian PLHIV community: A reflection from 2019 HERO Awards recipient

By October 9, 2020 Learning, Newsroom, Regional

This pic when I received an award from APCOM in HIV HERO AWARD 2019 within the category HIV Hero. This recognition really surprised me as I did not know who nominated me for this award until I got an email from APCOM who mentioned that I was selected for this award. Honestly I don’t deserve this award because I am just doing my responsibility as PLHIV to break the stigma in society towards PLHIV, especially in Indonesia.

Contributor:
Acep Saepudin, 2019 HERO Awards recipient for HIV Hero


My name is Acep Saepudin, but I am using “Acep Gates” on my social media because I am so inspired by Bill Gates, especially by his social projects. I am a content creator focusing on sexual health and LGBTQ issues in Indonesia. I started creating content about those issues since September 2018 because I was diagnosed HIV positive. So I decided to share my experience as PLHIV and openly gay on Youtube and Instagram. I also talk a lot about sex education in general, with the help from another organization or community which faces similar issues like me. I am also so grateful because APCOM recognized my work in 2019 and awarded me with an HIV Hero Award.

Before COVID-19 happened in Indonesia, I personally saw there were still many problems towards PLHIV and LGBTQ people. For example, there are still problems regarding accessibility of Anti Retroviral Treatment in some areas, especially in rural areas. Stigma towards PLHIV is still high. According to data, out of 650.000 PLHIV in Indonesia, only 17-19% are using treatment. Besides, I’ve found that there are some clinics which still stigmatize people, especially LGBT members, who want to take HIV tests. Additionally, the government is in the process of implementing some nonsense laws, such as the Family Resilience Bill in Indonesia which would require LGBT people to seek treatment at local government rehabilitation centers. Furthermore, there is also a bill which mentions that LGBT is a sexual “deviation”.

As a content creator talking about sexual health and LGBTQ issue, I am trying to do my best to give my audience information about COVID-19 related sex life. Fortunately, I am collaborating with UNFPA Indonesia to help me to enhance the quality of the content. For example, they help me to provide valid information regarding COVID-19 and sexual health education. Sometimes we hold online sessions to talk about those issues because this is a big deal to be known by young people, especially for those who are sexually active during the pandemic. At least they can do it safely. 

This pic was taken when I was in Chicago USA visiting a disability organization which also focuses on human rights including LGBT rights in 2017, where at that time I was selected to be awardee of YSEALI Academic Fellowship sponsored by US Government to take a short course about Human RIghts in Northern Illinois University. This pic is so deep for me, even looks really simple but has strong meaning to fight for human rights.

During the pandemic, some areas—such as Bali Province—have experienced problems regarding access to Anti Retroviral Treatment, since the stock of medicine was on hold due to lockdown. The lockdown has affected international flights and hence the import of medicine as medicine was flying in from India. That’s why some PLHIV received limited access to medication. We can conclude that the Indonesia government ought to be very serious in handling this challenge and have to be more concerned about this HIV issue.

Since the pandemic happened, I am not staying in Jakarta anymore because I lost my job and many projects were cancelled. I decided to move to my hometown in Cianjur City, West Java Province and stay with my family to do some small business in order to survive. Gratefully, in my area cases are not as high as it is in Jakarta so I can say that I am more safe by staying here. During the pandemic, mobilization has been limited and as most people do, we are just staying home as well. We can’t meet friends which of course really affected my mental health. That’s why I am having online consultations with a psychologist to maintain my mental health.

The COVID-19 cases in Indonesia keep increasing day by day and it makes me feel worried. I am only hoping that our government could have a clear solution and share the same vision between central and local government. As I see it now, our government doesn’t seem to share the same vision in solving this problem. 

The most important thing is that I hope our government could be more open to science. At the beginning of this outbreak, our Minister of Health of Indonesia seemed to mock this virus saying it can’t enter Indonesia. I am worried about the health and economy in the low classes of society, because it  would be really hard for them to get good health care and survive during the pandemic. Besides, I am also worried about people who are at risk of contracting HIV. They feel afraid to go to the hospital because they could contract COVID-19. That’s why I am also hoping that the campaign regarding HIV issues could be more serious and will continue to exist.

This pic was taken in February 2019 when I did trekking to Annapurna Basecamp Himalaya Nepal, this pic means a lot for me, as I went to do trekking there because I wanted to prove to the people who always said “PLHIV Can’t do anything” but in fact we could. in this pic I also wanted to break the stigma toward PLHIV in the society that even I am living with HIV but I could still do anything I want to do including doing trekking or hiking to the mountain.

Of course, this outbreak has affected what I have been doing, because besides being active on social media, I usually try to help young people who want to take HIV tests to the hospital. Most of them are afraid to go alone to the hospital. Therefore, I try to accompany them. Since the pandemic happened, I can’t do that anymore. I am staying in the village and can’t go to the city (Jakarta) during this pandemic.

One thing that makes me feel worried about this new normal, is how society will see this “new normal” since most people consider COVID-19 gone. In fact it’s not like that. Most people still misinterpret the meaning of the new normal. After the government announced that some areas were opening again, most people didn’t care about wearing masks or practicing social distancing. Even now, for example, there are a lot of people from Jakarta who travel to other cities to have picnics. They act like there is no Coronavirus.

The positive lessons that I have learned about this pandemic is how we consistently have to take care of our health, physically and mentally, not only during this pandemic but also after this pandemic. 

As a content creator I also have to create innovations when it comes to delivering my message on social media. During the pandemic I learnt a lot of new things, for example taking an online course, running a small business effectively on social media etc. Another thing I learnt, concentrates around relationships. Before the pandemic we could easily meet friends and family, but now this has been limited. This taught me how I should respect and take care of relationships.